Sadie Mae Sunshine

January 2011

2011-01-28T13:41:00.000-07:00

Sadie's crown says I am a Child of God. Starting the first week in January she was made a Sunbeam at church. They take her to the nursery for a bit at firs to run off some steam. She has one of the young woman help with her during primary. She loves it. She's finally looking more and more like a little girl versus a toddler.

Sadie dressed for church

Sadie crashed in the hallway with her 3 best friends, Woody, Jessie and Woody.. hey howdy hey!

We have had to do another pulse oximeter test on Sadie at night to see if she is keeping her oxygen sats up through the night with the CPAP. She is staying around 90-93%. We are awaiting word from the doctors to see if we need to add oxygen at night. However, we don't have a phone, which was disconnected last month. We are really struggling financially. No one can truly understand the fear I have every night as I put her down to bed if she'll wake up in the morning. I try not to think about it, but it's a mother's instinct to worry and get up and check on her a night.   I lost my health insurance in December due to the premium doubling and I couldn't afford to pay it. Sadie still has coverage through Medicaid, but as for me I have no insurance now. I'm so stressed anymore about how I'm going to manage financially and looking in the years ahead and as I age and have health issues how I'm going to take care of us. I worry so much about what will happen to Sadie, both here temporarily, as well as eternally. Who was she really in the life before this?. What amazing thing did she do to earn her state? and who will she be in the eternities. Will she remember me as her earthly mother, even without the bonds of the sealing power?   I'm so distressed over temporal matters, as well as spiritual.   I'm struggling in both areas doing it all alone anymore, that I've bottomed out. January has always been my worst month ever, and yet I feel so alone at times.

Sadie's vocabulary is growing, slowly.   Last week after attending the Temple a friend was leaving after dropping me off home and Sadie ran to the door after he left crying "Ba-pa.. Ba-pa"   The next day, Sunday, I was watching some youtubes with pictures of Christ in them and Sadie flapped all four extremities with excitement, recognizing who he was in the photos, say "yee-yus.. yee-yus"   It brought me to tears. She kept saying yee-yus and ba-pa all weekend.   It breaks my heart that I can't give her the family unit other normal family has. Some say she doesn't know what a father is.. but I know she does. She knows more than one would think.   I can see it.

I'm also really, really questioning my move here. I really love the area, the small-town feel, the people, my neighbors and church members, and I absolutely adore my little house, and I really truly felt inspired to move here, but why?   The reason I thought I was meant to be here frankly is never going to work out and so I question all my inspiration and answers to prayers for so many years.

Yesterday was a big wake up call. I'd been sick, really sick, for 3 days in a row, waking up very dizzy, nauseated, throwing up bile, nearly passing out, fearful of getting Sadie on and off the school bus safely. During the day the few people I could call on had jobs.. and the one person I reached out to several times blew me off and actually got rude with me, which raised a big red flag. He might as well said he didn't care at all.   Finally, yesterday after blacking out in the shower I drove myself to Instacare, where it was discovered my blood pressure was dangerously high to the point of a stroke risk and shouldn't have driven myself anywhere. I didn't even have a phone! I'm so pathetic anymore!   Look what following my inspirations got me? More alone than EVER.   I miss my children and grandchildren. I turned my world upside down for someone who doesn't even notice me or care when I'm sick or stressed. Well the doctors contributed my high blood pressure to stress. Well no kidding.. look at my life!!!   What would happen to Sadie if something happened to me? I didn't even have anyone I could leave her with emergently yesterday. I really love my house and where I live, but frankly I'm starting to wonder just how wise it is to be away from family with all my needs. I hate asking others for help, and so when I reached for help and got ignored yesterday really cut me deep.   I don't kid around about things. I really needed his help.. at least some emotional support, that I wasn't alone, but I was. I am.

Merry Christmas from Sadie Mae

2010-12-14T13:02:00.000-07:00

I originally had considered having pictures done of Sadie and I for our Christmas cards, but then my self-image has gone downhill over the last couple months with the skin condition I had last month and then with the weight gain I've had recently due to medication I was on for anxiety and depression. Then as I contemplated this last years events, etc., I recalled this picture we took the day before Sadie's open heart surgery in July. We were in Salt Lake, had been up to the hospital for preops and I was ready to fall apart emotionally, so I took Sadie to Temple square and spent a few hours. As we entered the upper level where the Christus is on Temple Square.. Sadie immediately knew it was a place of reverence and she would hold her finger to her lips and tell me .. .shh..shh..shh.. but then in a burst of excitement would holler HELLO.. then repeated.. sh..sh.. and HELLO... A group of Spanish speaking people were there and the missionaries were speaking to them in Spanish.. as they finished and moved on with their tour primary music began to play and Sadie approached the Christus with reverence, stretching out her arms in imitation of the Christ and then she began twirling to the music, in dance. I have no doubt she knows who Christ is. I of, course, sat and sobbed as only a mother can, knowing what I was about to put her through the following day in 6 hours of open heart surgery, trusting my care to the surgeons and surgical team and God to take care of her. My faith has been tested much this year.

This past week the Down Syndrome family had to say good-bye to one of God's little ones, Millie, after catching a virus from open heart surgery. She found the line to Jesus and went home to him. My heart aches for those she left behind; her family and loved ones. With her passing I cherish my time with Sadie more and more. Tomorrow is not promised. The present is our gift in life. Sadie is teaching me more and more to live in the present. She rarely complains and uses every bit of energy she has daily to explore, to learn and rejoice in life. She's taught me to dance and sing more often and pause at the singing of the birds and the beauty and blessings God has granted us.

I'm so blessed with my new home. I know God found the way to move us here and led us to our home and to our church family and neighbors. I have so many confirmations this is where we belong, and yet I still will doubt my reasons for being here as I long to see my children and grandchildren, Dad and extended family.

I'm learning to have faith and trust in the Lord and not my own understanding, which interestingly one of my favorite scriptures has always been Proverbs 3:5-6 "Trust in the Lord with all thy heart and lean not unto thine own understanding. In all ways acknowledge him and he shall direct they paths".

This is much like Sadie's first Christmas. She is finally aware of the sights and sounds of the holiday season. She knows now what a present is and that it is meant to be unwrapped. I've longed for this day. I took her to the storybook parade. Well we actually went with Jennifer Ganowski and her daughters, who ate her up.

We went to the display of the Nativities Sunday and listened to some wonderful Christmas music by community members. Sadie was in awe at the live Nativity with the primary kids and at the beautiful musical talent in the church chapel. We then drove around and looked at Christmas lights and in Sadie's own words "wow... wow".

I'm learning so much from this beautiful creation of God. She is truly amazing. Stubborn, full of spice and into everything, but my world, and what a wonderful world it is.

Jeremy & Laura's visit and Zion's National Park

2010-12-14T12:41:00.000-07:00

We saw a lot of these mountain sheep. This one was just off the side of the road. I can't believe how close I live to such awesome nature. We saw so much just from the van! We had an awesome day. Poor Mae got a little sick and threw up at the beginning of our road trip, but soon recovered. Her and Sadie were just happy riding around in the van.

My crazy son, Jeremy, doing his happy dance in the road at the entrance of a mile long tunnel drive, which I gracefully let him do the driving through. My anxiety was a little high, but I managed and actually enjoyed it. I don't know where he gets his goofiness from....lol We really had a fun day in the park!

Laura strutting her stuff .. doing her happy dance moves in the road as well.

The girls in the van... luh.. luh luhing along.

Sadie allowed out of the car for a bit... in the snow.. what the?

Maeleigh taking after her father, Jeremy, and grandma Jude.. got Mae

The girls chilling on grandma's bed, watching Monsters, Inc... ahhhhhhhh

Maeleigh tempted by the snow after getting Sadie off the school bus

We got Maeleigh overnight while Jeremy and Laura tripped onto Vegas overnight for their anniversary.

Decorating cookies with the girls....

I was so excited and thankful for Jeremy and Laura coming to visit. I get so excited for my kids and grandchildren to visit and see my home. Jeremy wanted to go to Zions and he brought me to the reality of what God's creations are in my backyard literally. I need to get out more. I now vision more road trips in my future!! I can't believe how much fun we had. It was like old times with Jeremy, and with Laura. We laughed and got goofy. Laura seconded that she knows where Jeremy gets his sick sens of humor from. I have no clue what she was talking about...lol Sadie LOVED having company. She cried at the door as the left a couple days later. The kids said they can't believe how much my house is "me" and how perfect it is for Sadie and I. They approve of my home and where I live, but then Jeremy is the one that pushed me to move here 3 years ago he planted the idea and then mom got cancer and I just couldn't leave back then. He told me back then that as he drove through Cedar on the way to Vegas he could see me living here.. that he knew it's where I belonged. So, I guess it's not my own personal insanity that brought me here. I've had so many witnesses this is where I need to be. The hardest.. very hardest part is being so far from family. I miss everyone so much. My dad, my siblings, nieces, nephews, and mostly my own children and grandchildren. It's hard knowing they don't get to see and enjoy Sadie's light on a regular basis and that's what I feel most guilty about.
However, now that I have a home... I have dubbed the weekend after Thanksgiving for my family to come visit, have a campout all over my house and combine Thanksgiving and Christmas during that week with them. I've traveled the road between Fillmore and Cedar more than once in snow storms and as I'm aging I have developed a great fear of the elements and with my poor night vision, etc., I've sworn off winter driving as much as possible.

My children and grandchildren are my world. I wish with all my heart they could truly feel the unconditional love I have for each and every one of them, that I didn't leave or move to be away from them, but only acted on faith and out of inspiration by my Heavenly Father. In many ways I've become closer to my kids in the last year.

I'm so thankful for Jeremy and Laura coming and spending some time with Sadie and I. It meant the world to me. In a way I feel I've already had Christmas with them visiting.

Thanksgiving 2010

2010-12-14T12:06:00.000-07:00

We put up or 11 foot tree that I splurged on my Home Depot charge card. Sadie was so excited when they delivered this HUGE box to our house. She loves looking at the lights and often falls asleep in the living room just looking at them. We put the tree up and our decorations before Thanksgiving in anticipation of family coming for the holiday. However, car problems and the snow storm prevented any of the kids making it. Though we were invited to a neighbors for dinner and I made a couple pies the day before in anticipation of going Sadie was grumpy and we ended up taking an afternoon nap instead and then I worked most of the day.

Sadie dressed for Thanksgiving.. Indian braids and all

Sadie's preschool picture of an indian

Sadie's first time out in the snow for this year. Thanks to Cheri Stinson and her daughter handing down the coat and snow pants she can roll in it all winter.

Our house in the snow.. Our first winter in our home.. *sigh*

A wonderful November blessing was that of Joni and Steven being sealed together with their children Brooklyn and Ben in the Dallas Temple. I'm so proud of my children. All 5 of my older children have all now been sealed to their families.

Visit home and Cardiology check up, November 6-8th

2010-11-10T23:41:00.000-07:00

She put her Jessie's hat on grandpa, gave him a blanket and then sat down and pulled her blanket over herself, just like her and grandma used to sit.

Grandpa and Sadie's new niece Clara Ann.

We finally got to meet Clara Ann, who is absolutely adorable and definitely a copy of Kinley. Sadie dearly loves her siblings and her nieces and nephews.

Harlyn (Jeana's daughter) holding her cousin, Clara.

Sadie playing in the leaves before our trip home and before our secret helper raked them all up while we were away and picked up our yard. I wish I knew who to thank, but I'm very grateful.

We left Saturday morning for our drive, the long way, home to visit family. Sadie travels so well. She loves riding in the van.   She thinks, however, every time we stop a fast food restaurant she is getting fries.. and starts saying "hot.. hot" because that's what I tell her after we get the food to wait because they fries are "hot.. hot" so the word for fries is now .. "hot.. hot". The communication is coming, but very slowly, but we have time. We sang in the van on our drive as usual to the Disney Country CD and Shrek sound track and everything else that we could get on and off the radio.

We stopped in Eagle Mountain to visit Jessica, Clark, Braxton and Baylee. Braxton and Sadie lifted their shirts and compared scars and played. Baylee has turned a year old and her hair is still red and thicker. She is a real cutie, wanting to arch her back and hang upside down and play. I got pictures of them, but I had them downloaded on my lap top which has crashed since we got home, but they are still on the camera thank goodness.

We then traveled the long way home on the old highway through Willard and Brigham City to Honeyville with a stop at the cemetery to have a cry and talk with my mom. I sure wished I thought to make her a pine bough with my branches off my tree and pine cones. She loved pine nuts. I remember gathering them when I was very little with her and the family.

We met Jeana, Harlyn, Jeni and her 3 girls and Thomas at the gym. I finally got my hands on baby Clara. What a doll! I have beautiful amazing grandchildren...and awesome children!! Sadie was right at home running through the gym, cheating and letting others bounce her on the trampolines. She is such an observer. She really wanted to jump and do flips like the older kids were. She was so excited just watching them she would flap her arms and legs and squeal watching them. Harlyn showed off and walked the balance beam, with her mom's help. Of course, Kinely showed off. She is the oldest grandchild and she thinks she runs the gym instead of her father. She is a born leader! Sadie was also fascinated with the zip line and wanted badly to try it. One of the employees would lift her and let her hold onto it the bar and run along with her. She really had a good time.   Me and Jeni took the girls to Wal-Mart after leaving the gym and then I took them home. Sadie cried when the girls got out of the car and we backed out of the driveway alone.

Finally, it's evening, and knowing the Jazz were playing we'd stayed at the gym so grandpa could enjoy the game. We got to dad's house in time to watch the ending of the game. Triple over time. Sadie was so pumped watching the game with grandpa on the big screen and making a popcorn mess. She was sure happy to see her grandpa. She loved going into mom's room to wander about and rearrange things. She broke a glass bubble shade of an angel lamp of mom's. Luckily she didn't get hurt. Dad was so patient with her. I know it must be hard having us there taking over the house and Sadie into things, but she is getting better, a lot better.

Sunday, we decided not to go to church. We put a roast in the oven and Jeni and Thomas, Jeana and the girls came by for dinner and visited, and the girls played with Sadie. Randy and Sandy called and came by to visit with us. We had a really good visit. Randy brought up Joni and Steven getting sealed in Dallas this weekend in the Temple and tried to get dad to drive me out there. Ha.. right.. Sandy kept telling me what deals I could find on flights. They really want me to be there. I really want to be there, but I know realistically I can't be there. I couldn't afford my visit with family this weekend. They turned off our TV service, because I can't pay them. I have made payment arrangements with my phone and power, and I don't know what will be shut off next, but I'm plugging along, trying to get back on track. I even canceled my doctor's appointment for today. I just can't afford it.

I drove Dad, Sadie and I out to Providence to Kathy's Sunday evening to be with Timmy when he received the Aaronic

Monday morning I woke up so dizzy with any sort of movement that I started vomiting.. and all I could vomit was bile. I violently throw up inside out. Dad had a doctor appointment, so he was gone. It took me 3 hours to get us dressed and things packed, etc., so we could leave by 11:00. I burst the corpuscles in my face, so I looked like I had measles from vomiting so hard. Randy came out to the van as I was about to head out in the snow storm to get us to Salt Lake to PCMC and then home from there. He told me I looked like shit.. well I felt like shit...lol   and offered to drive us to Salt Lake. I promised I'd be fine. I 'd drive slow and not turn my head or vomit in the car, that I'd been lots worse off before, and that I could handle it alone. He met me at Maverik and filled my gas tank (bless him.. I was going to have to get bank charges to get us home), bought me a Diet Coke and Snicker's bar.   I have good family. Randy and Sandy are always so thoughtful.

The drive to Salt Lake wasn't bad at all. The snow was wet and the roads just wet. Sadie's chest x-ray looked good and the cardiologist told me he had no complaints, that she is looking good. He did mention her significant weight gain since he saw her in April and asked if I'd had her thyroid checked. I told him she hasn't had it checked for about a year and he suggested I get it checked again and make sure she is on the right amount of Levothyroxine, as hypothyroidism can cause rapid weight gain, so we have that to do.

It was snowing in Salt Lake when we left about 2:30 and was sticking to the ground. The roads weren't bad until we got just past Fillmore and then the next couple hours was hell. I prayed. I cried. I held tight to the steering wheel trying to focus on a line in the road. I know I was weaving from one lane to the next. I can't see at night anyway... let alone in blowing snow.   I could hear the road bumps as I neared the edges of the road and the yellow line. The other cars were probably cussing me. I tried to focus for quite some time on a semi in front of me, guessing how to follow and where the road was. I literally felt like I was driving blind. I cried and prayed for God to send some help to guide me and lead me home. I know I never would have made it without help from above.    It was as bad as the last winter drive I had through there last New Years Eve. I'm so scared now to drive it again that I won't be going anywhere far til late spring, alone, ever again. I'm grounded to this spot on the map. Sadie does have an appointment in St. George this month. I pray I make it there and back okay. I have much anxiety about driving anywhere at this point. I must be getting old.

We got home around 7:30. I called dad and the kids and let them know I made it okay. The dizziness lightened up between Logan and Salt Lake, and by the time I got us something to eat at a drive through after the hospital I was feeling lots better.   Thank heavens. No way I could have survived that drive throwing up bile and popping blood vessels in my face. I'm really embarrassed anymore about anyone even seeing me.

I unloaded the van, turned on the computer, and then started worrying about how I was going to entertain Sadie now that Direct TV is gone and both DVD players bombed out on us the day after the TV went. I signed up for a trial of Netflix online and hoped that Sadie could watch movies from the lap top. Something wasn't right and I started messing with things trying to get movies to play, and well.. I blew the computer. It crashed on me. I spent all afternoon yesterday clearing it with a friend online helping me through it and spent much of today reloading programs, etc, on it again today while trying to work and keep Sadie out of things. She dumped the gallon of filbert nuts I'd gathered from dad's and was just trying to help unpack and such.

I went through bills, checked bank accounts, juggled things and fingers crossed and knees bent that I finally got the mortgage payment covered for November.   Money stinks! It's such an evil necessity. I do realize, however, after what I let stress, etc., do to me over the last couple months that I really need to just pull myself together, pull my head out and take care of us. Cowgirl up and deal with life. There is no way I can afford to get sick or be on medications. It broke me within a matter of weeks. How quickly things change in life.

I went from things looking good all around me, having a home, on top of bills, going to the Temple regularly to being so depressed and panic and anxiety attacks, til I was literally sick, not going to church, etc., and though it has been only a month tomorrow since I last was in the Temple it feels like years.   My life is like a snow globe in a wind storm.. .turned upside down with a flick of the wrist.

So.. time to get strong.   I charged me a big Christmas tree. I'm going to go to the food bank for some food and cook Thanksgiving dinner and carry on with life. Enjoy the holiday's with Sadie and with what family can travel this way or whatever, and be happy. I'm going to be freak'n happy if it kills me ..lol

I'm trying to just turn the rest over to God and leave his plan for me in his hands. I've done all I can and then some in doing my part and God will do his. I have to trust that and let things ride and just be what they are.

I have to for the sake of my health and well-being so I can take care of Sadie. Without her I shudder to think where I'd be.

Halloween 2010

2010-11-05T13:17:00.000-06:00

We carved Sadie's first pumpkin, ever! I haven't carved on in years, and this is the first year Sadie has developed enough to take an interest in holiday's and participating. It sure makes holiday's more fun for me!

Dig the way I pink taped her glasses...lol.. they are soo crooked..

She sooo hated the wings and wanted me out of the way of the TV, but I get my way when it comes to pictures. :D

Sadie still protesting the wings

The little snobby.. "I got my way" look after I removed the wings. After Halloween.. she wanted them on over and over.. as she is now trying to "dress" herself.. it is quite comical.

We got a surprise for Halloween. Jeana, Kurt and Harlyn came for an overnight visit and to spend Halloween with us. It was so fun actually preparing a meal, let alone a holiday, for the kids, which wasn't much on my budget, but I finally felt was doing something for someone. We went to the church's trunk or treat and had hot dogs and let the girls decorate a Halloween cookie. Kurt and Jeana was not impressed with the Cedar winds. I said.. this isn't wind.. give it a month or too... oz

Harlyn says bag the good food .. give me a sucker! She loves suckers. Suckers frustrate Sadie Mae because she can't bite them. There was very little candy Sadie would tolerate eating. She'd chew the skittles a little for the flavor, but spit out the sticky goo.. I win!

I was so surprised and very happy the kids came to visit. They can't make it for Thanksgiving when some of the others come for dinner, so they made it up to me early. <3 I have the bestest kids.. <3

October 2010

2010-11-05T12:31:00.001-06:00

Sadie's 2011 Pre-school picture. Dang she is cute!! I'm really surprised she cooperated with the photography. She avoids my camera. She really loves school.

Finally, after getting directions from LeAnn, we drove up a canyon here to this little lake where the kiddies can fish. Sadie struggled enough just walking on uneven ground and dirt, but she loved signing and trying to say fish and say Hey-whoa (hello) loudly over and over to everyone we passed. I really need to get us out more..

I went with Sadie's preschool class to the pumpkin patch and to pick out her own pumpkin. It was really fine seeing her in a school setting, among her friends and teachers. I noticed she doesn't really interact with other children much. It makes me sad for her. She seems to get anxious more. She holds her hair or pulls on her hair some and does this eye thing when she is tense. It breaks my heart. But the field trip wasn't like that so much. We really had a good time. She loves being around kids. She just doesn't know how to interact and play with them; at least as far as I can tell.

And "the pumpkin" has been chosen. She was so proud. She has a wonderful aide, who is hers alone. She is very very fortunate to have the one-on-one aide, and she is sooo good with Sadie too! So is her teacher, Carolyn Pace, and her speech therapist, occupational therapist and physical therapist. I'm so grateful to everyone who plays a part in Sadie's life.

Sadie, Alisha?and Taylor Roberts (LeAnn's kids) at the DS Awareness walk. Cedar City actually had a Down Syndrome event! The support here is awful. Sadie was the only DS little kid, but she got spoiled with attention. LeAnn's daughter smothered her, but in a good way.

A Sadie moment in our backyard. We love pink. I love Sadie. She is so amazing and I feel so guilty and bad when I'm short with her or get angry over "spilt-milk" so to speak. She is so sensitive and tender with her emotions. (gee wonder where she gets that from) She gets her feelings hurt and her pouty cry is pathetically sad. But, Sadie all-in-all is just an amazing miracle.

My how time go by.

Sadie is back in school and loves the routine of things, her new aide. I can't believe how she has grown since her surgery. I just boxed up all her size 3Ts and soon 4s will be going too.

The downer side of things is that I've been falling apart ever since surgery was done and all. I guess I'm a delayed reactor or the stress of everything doesn't come out until things are a little better. I broke out with impetigo, lived with it for weeks before I found out what it was. First thing the doctor said was.. You have a lot of stress in your life, don't you? Apparently, that is what set off the impetigo, which is staph infection. over $200 prescriptions that same day, plus the $40 co-pay really helped the situation... NOT. That was just the dermatologist. I then finally, decided after living here a year, having Sadie's doctors, etc., established, that I needed to establish primary care here for me as well, so I made an appointment with an internist to establish care and get refills of my meds and back on anti-anxiety medication. I hated going back on them. I feel like such a failure at life, but I was at a scary point, and have really bottomed out as far as myself goes, mentally, spiritually, emotionally and physically.   okay so another $120 have racked up on co-pays and got refills, plus another addition to my meds, and then I broke out in hives (before starting the new medication). Dermatologist crossed it off as stress, again, and prescribed another medication. My glasses were so scratched up I established care for my eyes as well, and another $40 co-pay and $50 in contacts.
I'm upset and feel very selfish for having to put so much into myself lately. I worry so much about losing my home.

The ticker.. that finally was the last straw, I believe, for me was the break up with the boyfriend, AGAIN. Life is so shittty alone. It takes two to hold strong against lives winds and storms, but I stand alone with my Savior there spiritually for me, but I needed him. I know his life is stressful and that he can't love me like I love him, but just to poof and disappear on me again amongst everything else, is just wrong. I honestly will never attempt another relationship. It's better to stand alone than to have someone pretend they like you awhile, date you, take you to the Temple for weeks in a row.. then poof.. gone... without a trace that he gave a rats ass.

I am literally falling apart. We are now so far behind on bills that I had to beg the power company to take payments on our overdue amount. I don't have enough to pay Novembers mortgage payment and it's already the 5th. Here I am far away from family, missed my granddaughter, Clara's birth last month, and I feel like a shitty mom and grandma too.   I feel like such a failure at everything.

Anyway enough of my woes. I've also become a whiner.. sheesh. It's gotta end.

Sadie broke her glasses and I'm trying to see if medicaid will pay on a pair especially made for kids with DS, with the lower ears, smaller bridge of her nose, etc.   I rigged her glasses with pink duct tape and added a strap and she still tears them off, and won't wear them, and yet I believe her vision has gotten worse with her depth perception specifically. She is even more hesitant about what is a step and what is not, and won't step down them without more support than she has been.

On the upside.. she called me momma two times in a row last week; however, has not said it again, which is typical.

We haven't been able to get her bowels under control since surgery. She gets so backed up and then explodes into a real mess when finally we get it broke up and loose. Last night was one of those explosions.

I sound depressing, huh? Maybe, because at times it is. I've raised 5 children, grown and on their own now, but no experience with them can really compare with life with a child with disabilities. It's a tough job, and generally I do it well, but it wears on one, especially one OLD single lady, trying to do it all alone. I'm not complaining about Sadie. She's the best gift from God, and she does bring me much joy and sunshine.. in my cloudy world.

Communication and potty training (which we haven't even attempted, because she has no clue) are the hardest things for us right now. It frustrates us both to tears. She screams because after several attempts at really trying to show me what she wants or what is wrong.. she can't communicate it to me and I can't read her mind.   She is improving, and has done so a LOT. When she wants something in the fridge she'll tap my arm and walk to the fridge, same with the door, etc. She randomly walks up to people and hugs them. Before it was just family and Mr. Dumped Julie.   She acts so healthy that you'd never know she had open heart surgery a few months ago. Medicaid is finally paying for her diapers. She is on the biggest size in infants diapers and it's a squeeze getting them on her, but at least I don't have that expense now. Every little bit counts.

Now to count my blessings. I am living one of my dreams. I am a home owner. I never dreamed I'd have my own home and yard, and wah-lah.. God brought me to it. I know.. I know without a shadow of a doubt and that God lives that his is my home and I'm meant to be here. Though, I'm sure are lives here are meant to touch others with Sadie's sweet Spirit, I honestly believe the main reason we are here just walked out on us and told me to move on. He doesn't believe any of it and has used his free agency to walk away from us. I'm nothing grand, but I know I'll be blessed raising Sadie and having her in my life and so is everyone who knows her.   She really bonded with him. First when she was still under a year old.. and then last year when we visited and again in February she wanted him so bad in the pharmacy and I blew him off because I couldn't to the rejection thing again... which I gave in and did... 2 more times.. and now I'm done.......Damn him.

Life goes on.

Last week I dug in the shed and got out all my holiday Barbies. Over 25 of them line the peak of my vaulted ceiling in a small landing/shelf like area.   I'm gonna paint the house pink (ok not really literally pink) but I'm making my house a girlie girl house and gonna just play dolls with Sadie for the remainder of my days on earth... and to hell with men.   I'm using my free agency to be a bitter old lady. so there. (big talker too).

Sadie's IEPs

2010-08-25T10:23:00.002-06:00

Sadie finishing up her Happy Meal we got at McDonalds after her IEP meetings

Sadie at McDonalds. She is just learning to "dip" which I guess doesn't seem like a big deal to most parents, but for Sadie this is a sign her motor skills are getting a bit better. She still grasps whole handed and doesn't use the pinching of the fingers much, but it will come... in time... in time...

Sadie was very excited to be at the school today.. she ran to her classroom and her teacher, open armed and gave her a big hug, then ran to the PT room to jump in the pool of balls. She loves school and school loves her. Her "team" all expressed how much they love and enjoy Sadie, and remarked about the glowing spirit she carries about her. It's always good to hear things like that. Her teacher told me last year the kids would fight over who got to sit by Sadie.

They were prepared for her, somewhat. Her teacher showed me how she rearranged her classroom such that most things were out of Sadie's reach. However, as we were discussing her goals, etc., she discovered the paper towel dispenser and if you pull on it and rip.. more paper comes from the dispenser. Good luck with them hiding that! lol

On the downer side, even though I know Sadie's delayed a lot and that she is more of a 2-year-old developmentally than her age of 4, it's hard to be slapped with the reality of things when I'm filling out papers for school or discussing her abilities and goals with her teachers and therapists. The hard part for first was forcing myself to fill out her registration papers.   Mothers name... Julie.. Fathers name .... None. Step-father's name and number...None.   Others in the home... None. Emergency contact number?? .... alternate drop off for the bus???? and it's times like these that I feel more displaced than ever and I start doubting why I'm here, away from family, etc.,    Am I really doing the right thing? Even though so many times I've had the calming reassurance that I am??

They are keeping Sadie in the 3-year-old preschool class again this year, so won't be moved up to the 4-year-old class until the next school year and who knows when she'll make it into kindergarten. Not that it matters. It really doesn't. Sadie is Sadie, but sometimes there are little moments that it really hurts that she's not "normal".

Sadie went to bed by 8:30 last night. Evenings are so hard on me. I used to get so much work done in the evening, but now in those long lonely hours my mind travels far off elsewhere, on spiritual matters and on what life is really all about, where I am and where am I going from this point.

I was on such a high the first part of the month with so many wonderful spiritual things happening in my life, and now this slap of reality and back to the real world bit has me down, way down, and I realize it's Satan working on me, but it's a tough battle.

I got on the church web site, looked at my personal geneology and it depressed me further. I read through the Proclamation of the Family, written by the first Presidency and is considered as modern day scripture. One sentence stands out to me and it eats at me and eats at me, until I've realized I just can't look at my geneology family pages or read the proclamation because I don't qualify for those kind of blessings.

"Children are entitled to birth within the bonds of matrimony, and to be reared by a father and a mother who honor marital vows with complete fidelity. Happiness in family life is most likely to be achieved when founded upon the teachings of the Lord Jesus Christ. Successful marriages and families are established and maintained on principles of faith, prayer, repentance, forgiveness, respect, love, compassion, work, and wholesome recreational activities." ~Proclamation of the Family~

When Sadie was born the church approached me about adoption. I knew the importance of a 2 parent family, and to be honest, back then I truly honestly felt I could see the future, that Sadie and I would have an intact family, with a mother and a father, and I had reason to believe so. I'd been told I wasn't going to be alone in raising her. How wrong he was. Yet, through my prayers and serious consideration on wanting to do right by Sadie, I truly felt adopting her out was not right and that she would have a mother and a father, that God had a plan for her that involved both.....I've failed her in that respect.

I know I need to get past my way of thinking on these things, and yet how can I ignore what God wants for us? Are Sadie and I not worthy of those blessings?   Yes, I've been told Sadie doesn't need life saving ordinances, such as baptism, etc., but she does have a right to an eternal family, and I don't care what people say.. God isn't going to wave a magic wand and just make her mine for eternity. As mortals we have a responsibility to take the necessary steps for God to grant us his blessings.

And I could go on all day about, but I won't. It just gets me worked up and down on myself, and I start doubting my personal revelations and Spiritual guidance, and become very depressed, which has been the case the last 2 days.

Life is what it is.   I made the choices I did. Things haven't gone as I thought they were supposed to and what I thought were what God wanted for us. Admitting I was wrong in my interpretations is really hard on me, but I have to just put it all out of my mind.

I still feel I'm where I'm supposed to be. I love my home, etc., but I do get horribly homesick, and yet I know if I went home to visit I'd just be in a hurry to get back here.. to... what?

I'm doing all I feel God has led me to, but somehow the pieces to the puzzle aren't together, yet, and may never be. There are too many complications and too many other's feelings and beliefs involved, that rule me out.

So, onward... Back to our abnormal "normal" life. Sadie will be back in school. Winter will come and I'm already battling the fall/winter blues that hit me every year. The holiday's are coming and they depress me further. I used to love them so much.   Spending time with my grown kids and grandkids are awesome and I live for moments I see them, and yet attending family things without a supportive other half or immediate family....just Sadie and I the misfits in the crowd..... nothing can replace that one person in your life that makes a family a family... your other half... that's the missing link that haunts me... and I have to let it go. I have to.

I'm trying hard to accept the fact that I only have 5 children linked to me eternally and that Sadie Mae is only a mortal life loan to me by God to learn from. I provided her a body and she is providing me earthly and temporal purpose. Eternally she is God's and only a mortal gift to me. I have to remind myself this daily and quit trying expect more or feel like a failure because I couldn't provide her a two-parent home or an eternal family.

Sadie is adapting well to her CPAP, though the mask is leaving a rash around her face daily. I've been applying eucerin cream a couple times daily and last night even tried Cavilon on her face in hopes to prevent more irritation, but we'll see how it goes.

Her favorite thing right now is her personal DVD player that she keeps next to my desk with me, watching video's over and over, insisting the radio be on at the same time. Why am I paying DISH TV? we don't ever watch it.

Financially I'm struggling to get back on track from our summer "vacations" at the hospital and doctors offices, but I'll get there. With Sadie gone a few hours 4 days a week I can hopefully get some work done and being in a routine again will be healthy for us both.

First week home, July 24, 2010, Saturday

2010-07-24T23:37:00.000-06:00

Sadie got a package from Santa and his elf. Color wonder markers and a princess marker book, and mommy got some bath and body goods... Calgon take me away!

We've been home a week now. A crazy week at that. The first part of the week was on the phone, off the phone waiting for calls and setting up appointments and rearranging appointments, discussing the drain tube site that opened up after Sadie was straining to have a bowel movement.   On discharge x-rays we were told her bowels were packed and they attempted a suppository while still at the hospital with no luck. We then loaded her on lots of juice and Metamucil for days afterward. After the site opened I cleaned it and covered it with a Bandaid over night, but removed it in the morning to air it out and clean it again. The drainage was very foul smelling and I began to worry.   Talked to the doctors, drew an ink line around it and watched it. I ended up having the girls next door watch Sadie Tuesday night while I ran to the store for suppositories. She was so miserable, not eating and straining with no results. Finally, she had a large hard painful bowel movement with the suppository she was not happy about having.   I knew in the subsequent days there would be a lot more coming from the bottom end and prepared myself.   The fun begins.

Finally, after back and forth phone calls with our pediatrician, the physicians and PCMC , their sleep center and another one we found in St. George, we finally got some appointments made.

This coming Wednesday, July 28th, we have a sleep study consult in St. George at 3:00 p.m. in the afternoon with the sleep study to follow that night beginning at 8:00.   Pray Barney makes it there and back okay. I've stocked up on Antifreeze :D

August 4th, is her followup appointment in Salt Lake with the cardiothoracic team. Until this time she cannot bath or get her incision site wet.   The drain site got really bad and looked as though it was spreading the night before last, but the scab fell off in the night, drained some, and now the redness is going down and I think is finally healing. Giving her a sponge bath yesterday and wetting her hair and redoing the braids was torture.

She has slept in her own bed the last 3 nights with her oxygen tubing down the back of her PJs. I've learned a wrestling maneuver that helps with the struggle with the tender grips on her cheeks and attaching the tubing at night, and we are getting in the groove of things somewhat.

During our first week home.. I've tried to get the house clean. It was still a mess from when the grand kids were here earlier in the month.   I shampooed the front room carpet and Sadie's room. I put together my book shelf and start eliminating junk and crap from the house. The dining room/work area is still in need of attention. I've mowed the lawn, pulled weeds, dug up some more of the garden, planted some more flowers, and have kept myself busy as I can, and until tonight haven't been able to sit down at the computer very long without being distracted, afraid if I stopped I'd fall completely apart.

A friend came by a few times and has fixed my sprinkling system for me, so now I can water everything and it is working well. It amazes me what stressed me out for over a month and gave me grief in trying to fix the piping took a man a few minutes. There are just somethings, I must admit, I just can't do. But, I still refuse to admit I need a man. I can't let myself believe that anymore.

Today, was my down day. It's all hitting me now. This is how it works with me... when the dust settles somewhat I lose it.

I worked in the yard yesterday and again this morning.   It's a Utah holiday. A girlfriend invited me to their town pioneer parade, but I didn't want to go anywhere. Well, I did, but where I wasn't really welcome. I have to remind myself consistently that things aren't the way I want and never will be. I'm on my own and always will be. Sadie and I are it. I just struggle getting out doing things, just us too.

Today, I've been totally emotional, crying. I tried working it off outside. I then unboxed the porch swing/glider I bought while in Cache Valley, with visions of Sadie and I swinging in the evenings and watching the birds.   I looked at the instructions and broke into tears, and didn't even attempt the thousand bolts, screws and parts.

I worked a few hours while Sadie napped. She's been a bit grumpy today and has needed a long nap both yesterday and today.   I finally decided to nap myself.   I'm depressed, and I can't let myself be that way.

I just can't.

Tonight I feel so alone, lonely and totally spent.

I admit it. Tonight, I need to be held and the comfort of a loving man's strong arms around me, but admitting it is even more painful.   It isn't going to happen in this life time.

Somehow, somewhere I need to cow girl up and gain the strength to carry on without the tears and longing for that kind of comfort...

and I will.. I am becoming stronger and I will bury that part of Julie.. the insecure, needy, dependent, loser part of me. I have to.

First Day Home postop, Saturday July 17, 2010

2010-07-24T23:15:00.000-06:00

Cassie had road home to Cedar City with us Friday to see our house and such, spent Friday and Saturday night in Sadie's princess room, and Sadie and the oxygen tank slept with me. What a nightmare trying to get the oxygen on her and trying to sleep with it as she tossed and turned and climbed all over me all night, hanging onto a leg here and there so she didn't dive off the edge of my bed. I could see this was not going to work like this or we'd never sleep again!!

The Bishop and his wife came by Saturday, bringing leftovers from a funeral and to see how we were doing.

Praxair called and brought by the oxygen converter and more tubing and supplies.

I did more unpacking and cleaning.

Sunday morning we drove Cassie to catch a shuttle to Salt Lake downtown and say our goodbyes.

We are home now and on our own. Now what?

Postop day 4, Friday July 16, 2010

2010-07-24T23:10:00.000-06:00

Sadie actually loving the sticker book and tried really hard at sticking the stickers on the pages. She really loved doing it. It's the first time she's ever wanted to do the sticker thing.

Waiting and waiting for discharge. Sadie decides to make a phone call on her princess phone and make my bed while we were waiting and waiting to be discharged. (that bed was so NOT comfortable and sleep did not come)

waiting and waiting in the van after discharge with Cassie, singing kids songs, while mom is waiting and waiting at the pharmacy for meds that had been called down and not ready... grrr.... (car is running and a/c on in the hot weather)

After the cardiothoracic team meet early Friday morning they agreed to release Sadie to home. I knew it would take awhile to be discharged, but had really expected to be gone by noon. NOT.   I asked the nurses when it would be a good time to check out of the hotel Cassie was in, so as not to miss the physician, etc., she sent me right then. I wasn't gone 20 minutes and I missed the physician, of course!!!! It took hours for her to get back to us to start the discharge process.

Jeana had called and said she was going to Jessica's to do a Mary Kay party that evening. I told her to hurry and come early and we could see her.   She ended up beating me to Jessica's in Eagle Mountain.

Finally, by 2:00 or so we were released with a tank of oxygen and orders for more, a followup appointment, orders to get a sleep study before her followup appointment for sleep apnea and then continued oxygen RX from doctor after that if found to be necessary, pain medicine and Lasix, and we were off to Eagle Mountain in heavy traffic in an over-heated Barney mobile.   I was so ready to go home. I was too tired to cry over having to go back to the oxygen bit again.

I picked up a party pack at Del Taco for lunch for Jessica, Jeana and I, and stopped in at Jessica's for a late lunch and visit with 2 of my daughters, grandkids Braxton and Baylee Ann.   I was worried how Braxton would take Sadie's scar and bandages, knowing he'd have to have his heart fixed in the following weeks. He did well.

I let Barney cool while at Jessica's, but I smack myself for not adding antifreeze at the time or at least checking it. We ended up running the heater in heavy traffic again from Jessica's to Nephi, and I begin to majorly stress.   I couldn't have Sadie exposed to the heat on water pills and recovering from heart surgery, yet I couldn't explode the van in the middle of nowhere either, and Cassie knew even less about cars than I did.

We stopped in Nephi to top off the gas tank. The engine was so hot that when I removed the gas cap gas sprayed out all over me, and I went into the mini-mart to get use the restroom, bawl, pray and buy more antifreeze, Diet Coke and something for Sadie to eat. It was a Chevron and I ended buying her the Breast Cancer awareness car and Jazz car...lol. She loves them.

And we headed out, once again, watching the temp gauge all the way home, but home we made it. Home sweet home.

Got everything unpacked and in the house and crashed. Sadie was happy to be home.

Postop Day 3, Thursday, July 15

2010-07-24T22:45:00.000-06:00

Natalie Clyde and her husband had visited me and Cassie in the waiting room, Tuesday night, I believe and brought us a care package. Junk food and m&m's for me :) Sadie a princess nightlight for her princess room and a strawberry shortcake sticker book, and Katie had brought Sadie the stuffed lamb which she adores and laughed out of control when I'd give it to her and say baaaa....baaaa. She was asleep when Katie saw her, so I took a picture of her with it for her.

Thursday we got moved to the floor. Yipppeee.. Finally. I set up my lap top and got some work done as Sadie continued to watch Tinkerbell. That morning in NICU the nurse had got her out of bed when she was trying to do it herself and she very unsteadily and weakly walked a bit down the hall to find a video and toys.

By Thursday night she was running the halls on the third floor saying hi.. hi.. hi to everyone and bye bye as she drove around in the lil coupe toy car and playing with her toys.

We were so ready to go home.

However, still on oxygen when sleeping and during the night as her sats wouldn't maintain while she was sleeping.

Postop Day 2, Wednesday, July 14

2010-07-24T22:38:00.000-06:00

Wednesday Sadie was perking up and getting more sassy. They found a DVD player and I got the Tinkerbell Lost Treasure DVD that Cassie had brought her and she watched this nonstop over the next 48 hours or more.

By evening the other 2 drain tubes had been removed (not without a struggle however..lol) and finally the IV in her neck, leaving the IV in her hand and oxygen. The outer bandage from the chest incision site was also removed exposing the wound and steri-strips to the air to keep dry. Though she was still on the medication to make her heart pump they considered moving her to the surgical floor to a private room on the floor that night, but there were no beds open, and so she spent another night in NICU.

Sadie was doing remarkably well.

I, however, was totally exhausted. At shift change at 7:00 the nurses told me to not come back that night unless they called me and to get some rest. I left the hospital anticipating a nice long hot shower, a couple hours of work at the computer and an early night to sleep. However, when I got back to the hotel my Uncle K was there with Cassie and they were waiting for me to go to dinner.

I was so wiped out and not with the program that for the second time since our arrival in Salt Lake on Monday I nearly got into a car accident by pulling out in front of a vehicle at an intersection. Sunday was the first time when I had Sandi and her girls with me... with both incidences everyone is yelling at me and it was like slow motion in registering in my brain what they were telling me.

Dinner turned out nice, but I was totally spent. I didn't get any work done Wednesday night and knew I wasn't going to make my line count for the pay period, but I was at the point I just had to let it go, and gave into the idea of sleep.

Just as I was preparing for a shower the phone rang. It was the hospital. Sadie was crying and the nurse couldn't get her to take her oral medications. Sadie had slept a lot all afternoon and I think didn't get pain medication early enough, so she was very uncooperative, so I went back to the hospital and got the medicine down her and consoled her, and after a couple hours drug into the hotel and collapsed.

Postop day 1, Tuesday, July 13

2010-07-24T22:21:00.000-06:00

Sadie slept most of the day Tuesday, but towards late afternoon became more alert and drank more liquids and was even offered fries, which she pushed away. Today they removed the femoral line in her groin, which was traumatic. I'm trying to hold her arms down without hurting her upper extremity and the nurse is trying to hold down her legs as she attempts removing the IV. In the struggle Sadie snapped off her PEG tube to one of the chest drains. The nurse calls over some more help. The peg tube had snapped right off. They said this was only the second time they had seen this happen. The first time they ended up rigging it somehow to make it work. They called the surgeon for recommendations. As this drain wasn't draining hardly any fluid he opted to have it pulled and hope for the best, so we went through the drama of having to pin her down again and this time after removing the tube, cinch up the stitches there to close the hole. She was soooooooo not a happy camper. Apparently, she didn't think they were removing things fast enough and helped out with that PEG tube. Funny now that things turned out okay.. but it was so not funny then.   Things have gotta be more eventful than it should be with Sadie Mae.

Sadie was doing remarkable well, otherwise. She is such a tough cookie.

Dad had come up to the hospital with me Tuesday morning and stayed awhile to make sure she was out of the woods before he headed back to Cache Valley.   I'm so glad he came to be with us.

Monday night they let Stacia and Sandi come back into NICU to see Sadie, and Katie was upset she couldn't, but we asked permission the next day and she was able see her later in the week.

Now, I'm writing this almost two weeks later and my days and events of most things are becoming a blur. Hopefully, I'm getting the facts on who visited when and what on a correct time line. If not.. consider the state of my stressed being.

Surgery Day, Monday, July 12, 2010

2010-07-24T22:08:00.000-06:00

We were at the hospital at 7:00 to check in. My dad was with me as we took Sadie back for her exam and changed into her hospital pajama's in preparation for surgery. Dr. Burch came in and introduced himself and went through the surgical procedures, etc.

The day before in the lab Sadie and I ran into another girl, about age 10, with Down syndrome, dark hair and absolutely adorable, with her mother, who I learned later were Sarah and Donna.
We saw Sarah, Donna and her father in the waiting room before surgery and visited. Sadie recognized Sarah and sat next her for a bit. Then when they took us back to another waiting room, where the anesthesiologist and various other doctors visited with us we saw Sarah pass us again as they took her around to a separate waiting room. Sadie followed suite and ran around the corner and to Sarah's arms. The girls were absolutely drawn to each other.

Sadie has had the oral sedation medication before and it has just made her sleepy, yet she's always fought going to sleep, but this time she was on a high! She belly laughed and giggled all the way to the surgery doors, patting my face and laughing. I handed her over to the anesthesiologist and she giggled at him and was playing Helen Keller with his face as well. She had everyone in the waiting room air and the doctors and assistance very well entertained. It made it somewhat easier handing her over to them at the doors, but the short walk back to the surgical waiting area seemed very long.

After surgery. Joni commented the picture looked very similar, other than Sadie is bit. It wasn't as shocking this time around seeing her like this, as it's what I had expected. She really hated the ventilation tube

In the waiting room they gave Sadie a cloth doll in a hospital gown to draw the face and hair, etc., on. While in the wiating room I put the hospital gown off the doll and dressed George in it. lol.

The surgery was about 5 hours long. The OR nurse would come and report to be every hour or two. It took them over an hour just to get her IV lines started. Children' with DS aren't famous for good cooperative veins and neither is Sadie's gene pool. She inherited her mothers sappy veins.

It then took a couple hours for them to cut through all her scar tissue.   I didn't realize how tedious this can be, being careful to not cause a bleeder, etc. She grows an extraordinary amount of scar tissue. I had expected this to be difficult, as well as the doctor was prepared for it as well. Remove the wires and break through the sternum, again.

Then came the part I hate the most of all. The heart and lung machine. Knowing a machine is pumping her blood for her and expanding her lungs was a very uncomfortable feeling for me, and then the big moment is in anticipation for when they come in and tell you the surgical procedure is finished and she is off the heart and lung machine and pumping and breathing on her own.   What a relief.

The hours went by easier as I had my dad with me, my girlfriend Sandi and her two daughters Stacia and Katie, and Casie who kept me yacking, laughing and tried keeping my mind entertained. Stacie bought me a couple Cokes and fussed over me.   Dad slept some, paced the halls a lot, and answered calls from my siblings.

When it was all done the surgeon came out and took dad and I into a conference room and told us the surgery was a success for what they went in to do. They removed the subaortic membrane and repaired the damage to the aortic valve. He told us that though subaortic membranes and thought to be congenital he didn't believe Sadie's was, but rather caused by a stitch from her first surgery, and that it is probable that this will regrow and will need removal in the future again as many times as possible. He told me they ligated the PDA (which I'm not sure why.. this was patched with her first surgery, as well as a patch/wall between the right and left ventricle, mitral valve and right artium).

He also said the tricuspid valve still had problems, that he could have purse stringed it, but then it would have constricted the already too small pulmonary valves, so he left that.   He also explained that if the membrane regrows and they go back in when she's more adult size, around age 10-13, they may consider her for 2 heart valve replacements, which surprised me. I knew they don't consider DS patients for heart transplants and I thought the same went for valves, and so I asked him about this. He said valve replacements are considered case-by-case.

All this was a lot to take in and I'm still not sure I got it all straight in my head or even exactly the way he explained it to me. You'd think I'd understand the heart and how it functions, etc., by now. I should. I try. I remember getting an A for a drawing I did on the heart in health, but then that was for my art skills I'm sure and not my brains.

We then had to wait another 45 minutes or so after our visit with the surgeon to see her in NICU.

They kept Sadie in soft restraints. I had warned them how active she is and intolerant of Bandaids or anything on her and that she would pull out everything she could upon awakening. When she awoke she would jump as if startled and bolt straight up, as much as one can when hooked to so many things. She hated the vent tube and would moan, but they didn't remove it til later that night because she struggled breathing on her own for awhile.   And thus began the countdown process at removing one tube or line at a time.

After removing the vent tube they offered Sadie clear liquids which she guzzled. Her lips were all puffy and looked like she had a lip job. They kept her sedated pretty much and on morphine for pain, but she would do her startling jumping up thing often and kept everyone on their toes. She could not be left unattended at ALL.

At shift change our nurse and I tried telling the new nurse coming on that she is very active and cannot be left unattended for even a second as she would bolt up and start grabbing at things. She bawlked at this and acted like she was cool and could handle anything.. hahahaha... When I returned after 8:00 the first thing she said to me was.. "YOU were right"!! and from then on one of us was always right next to her.

Dad and I had run down during the shift change and go a burger. Dad left earlier in the evening after we got back. His eyes were blood shot and he looked absolutely exhausted. Neither of us had slept the night before and the stress had taken it's toll on us both.   I didn't dare look in the mirror.   I got back to the hotel late, took my meds and crashed until the next morning, knowing that while she was in NICU was the only time I was going to get any rest at all.

Sunday, July 11th, 2010, Preops

2010-07-24T11:44:00.000-06:00

First, please ignore the dates on my pictures. Obviously I need to reset them on my camera. The date is truly July 11, 2010.

Sunday morning Sadie and I made the trip up to the hospital to have her preop lab work done. I was an emotional wreck. There had been some issues amongst family and some drama, and dad wasn't going to make the trip to the hospital to be with us. I finally convinced him that I needed him there. He needed to be there. Actually it was more my sister, Kathy, who convinced him that it was where mom was going to be and where he needed to be, so while at the hospital (waiting for the wee bag to fill by the lil princess) dad called me and told me he was on his way, and things worked out with the family dynamics.

We spent a few hours getting things done at the hospital, blood draws, etc. Then as I headed down the hill towards the hotel I passed the turn and kept heading towards the Temple. I wanted some time alone with Sadie to pull myself together and gain some strength, so we stopped at Temple square and spent hours in the gardens. We didn't spend long in the visitor centers. Sadie's energy just wasn't up to it. lol.

We did walk up to the Christus and Sadie was so amazed with the statue of Christ. When we first walked up the circular ramp up into "Heaven" where he stood... she'd pause in her tracks, look up and say "wow". On arriving at the top where Jesus stood a group of Spanish people where listening to an interpreter explain the gospel Sadie looked at me and said.. "sh" and then hollered out "HELLO" then "sh" and then "HELLO". After the introduction, music started to play songs of Christ. Sadie twirled to the music and paused to just listen. She spent some contemplative moments at the statue.. and when families or groups would walk up to pose for a picture.. she would try to join in with them. She did this several times. Silly kid.

This out in the park where there are fountains and flower. So many flowers and peace on the Temple grounds.

Dad called and said he was in Salt Lake and where was I. I told him we were at Temple square and where to find us, so he met us there and spent the afternoon with us in the park too.

Then my girlfriend Sandi called. Her and her two daughters, Stacia and Katie, met as in the park too. Katie had come to meet Sadie at the hospital several weeks earlier when she had her ear tubes and grew a special bond with Sadie. Stacia and Katie entertained Sadie well for awhile at the park, chasing her around and such.

I had mentioned to dad when he called that morning that Sadie had not yet had a Priesthood blessing. I went to the chapel at the hospital and met some Priesthood holders there and they gave me a name and number to call if I needed oil or a blessing, as I wasn't sure if dad had found oil yet.

Jeremy called while we were at Temple Square as well and said him and Laura and Maeleigh were on their way to see us, and they met us there as well and I finally got a picture of the three of them together. :)

We then decided we'd all go to Chuck-A-Rama for dinner. I called Cassie and told her of the plans and Jeremy called Jessica and Clark so they could meet us as well. They didn't meet us for dinner, but met us at the hotel after dinner.

Dinner was really nice. Sandi and her girls went with us and they got to meet some of my family. Our hotel was right across the street. Dad got himself a room and we met as a family in my room. The kids had so much fun with Sadie. Maeleigh, Braxton and Sadie played and played, laughing and such. I got to hold Baylee and play with her. It was so nice having some of my kids and grandkids with me and to have dad there. I really needed my dad there with my children and grandchildren. It's been so hard with mom gone. Even harder than I ever thought it would be. I need to feel family around me. Life changed so dramatically with mom passing and not being there to hold everything together. The evening was an absolute delight. Even Joni got online and played a small part in the evening.

Before everyone left for the evening dad participated with Jeremy and Clark in giving Sadie Mae a Priesthood blessing with Clark anointing and Jeremy giving Sadie a blessing.

All was in order...The kids left for home after hugs and comfort given...and we attempted sleep. Sadie slept, well, yet glued to my side. She knew something was going on and I believe a little unsure and anxious as well, but the day in the park and having the kids around to wear her down she slept. She ate well at dinner, which would be her last for a few days. She guzzzled drinks and ate whatever she want, fries, ice cream, pasta's, and such.

Sunday started out very tense and I didn't think I could make it through the day.

Sunday turned out to be a very very good day.

Saturday, July 10

2010-07-24T11:14:00.000-06:00

The day had come. It was time to head out and make our way to Salt Lake. Sadie was excited because we were "going"... she loves to go.. go.. go...I did the last minute every things from making sure I had everything packed for the lap top so I could work, phone chargers, batteries and camera, and clean underwear..lol
I so drug my feet getting out the door. I didn't want to leave home. I packed the last of things in the van, buckled Sadie up and backed out of the driveway. I went through the garage and closed it and proceeded to lock up the house. As I passed through the living room I paused at the picture of Christ and the little girl I have on my wall (painting by Greg Olsen, Forever and ever) I fell to my knees and once again poured my heart out and prayed we'd have a safe trip and to help me through the following days.

The first stop was in Eagle Mountain to see Jessica, Braxton and Baylee Ann. I got some sweet pictures of Braxton and Sadie playing together. They have a blast together and get out of control silly. Braxton will be having open heart surgery following Sadie's in September to have a hole in his heart patched. He said to his mom one day after asking about Sadie getting her heart fixed... "Mom, Sadie and me, We have special hearts)" and yes, they do.

We then headed into Salt Lake and to the hotel where I'd made us reservations. Cassie had flown in to be here through the surgery and such, and we met her at the hotel. We hauled stuff into the room, and right now I can't remember much else of that evening. Dad called and wanted to come down, and I had told him before when we visited over the 4th that he could stay over with us if he needed to when he came to Salt Lake to be with us the first few nights.

Count down to surgery

2010-07-24T11:01:00.000-06:00

Sadie received one of Emily's smile box's, full of crayons, markers, TY beanie babies, and little things to take with us to the hospital to keep Sadie occupied.

Sadie loves to swing and would sit on grandpa's swing just waiting to be pushed, sooo when grandpa took us to Lowe's to find the parts I need to fix the sprinkler pipe I bought a glider/swing that she could climb in by herself and swing a little or we both could swing together. I have yet to put it together... however.

and on our way home we took the long way through Honeyville and visited grandma for a bit, and I couldn't help be shed several tears and wonder what God had in store for us.. Would my little girl come through surgery okay? or would he call her mission over now that her mom has her life together somewhat, would she be there in the cemetery next to grandma? So many anxieties and fears.

My friend and possible relative, and photographer, TinaMarie was coming through Cedar City and she knew I wanted some pictures of Sadie and I together, so she stopped into meet us and do a photo shoot.

Because my anxieties, panic attacks and fears had the best of me, in worrying about how Sadie would fair through her surgery, and knowing she could have a heart attack at any time and without surgery she wouldn't be with us long anyway... I started hanging onto other's faith and feelings on her outcome. During her time here at my house and doing the photo shoot in my yard and watching Sadie Mae TinaMarie had seen Sadie dressed in white, a few years older, at a wedding reception, and she told me she had the feeling that Sadie's mission here wasn't over and won't be until she sees me married to my eternal companion and being sealed to the person who is to be her father. She told me this after her return home. I've hung onto that, as well as others telling me they just had the feeling she'd come through things okay.   I knew I had to lean on others inspirations, as I was not trusting my own.

I knew I only had a few days before we had to head to Salt Lake and I was dreading each passing day, and yet I had so much to do try and prepare the house, etc., to leave. I spent so much time trying to fix that dumb sprinkler pipe and finally gave up after many tears and just turned that part of the system off when I was gone. The house didn't get cleaned from our 10 day party with the girls. So much didn't get done. I didn't get as much work done and never did get ahead on my line count... and after falling apart several times I had to just start letting go of the things that just had to take a back burner and were least of importance as the dreaded day drew near.

I had many friends from everywhere, family, and ward members who fasted and prayed for us on Sunday, July 4th (regular monthly fast Sunday for us mormons) and many other friends of other faiths sending thoughts, love and prayers our way. I counted 17, that I know of, LDS Temples that Sadie has been on the prayer rolls and prayed for by thousands over the the last few months. I've been in awe at how many people really do sincerely care for us.

It's hard to explain the fear and anxieties a mother has over her child's health and well-being, especially a child who has chronic health issues and/or a heart patient... no one can truly understand unless you are or have been a mother going through similar situations. It's torture.   I've spend hours on my knees, begging Heavenly Father for more time with. I know he'll call her home someday, as he will all of us, but I'm not ready to give her back to him. I don't think I ever truly will be, but I know he will. I asked him to please, please, give me a few more years with her.   I feared God would put me to the ultimate test, and in a way he has. Every day has been a roller coaster of emotion. Every day I've tried to enjoy ever precious moment with Sadie Mae, wondering when it will be the last. I've developed so many sty's in my eyes the last few months from crying daily.

I finally have had to realize I have no control over most things in my life and I have turned it over to God. He's heard my prayers, knows the desires of my hearts and I've asked him for more time and I know I must trust that he knows best and if and when he calls her home it will be for my own good......but I've asked him to please take this cup from me..   I know without the many prayers in our behalf and the help from the other side of the veil I never would have held up as well as I did.. I felt like I was taking the lamb to the slaughter. Sadie wouldn't understand what was going to happen to her.   With her first surgery she was too young to remember it and it just seemed so much harder in many ways this time around,

Kinley & Madilyn visit grandma and Sadies

2010-07-24T10:28:00.000-06:00

Kinley and Sadie at the 4th of July parade in Knarraville with my friend, Randi.

Kinley, Sadie and Madie at the playground at the elementary school

The girls loved to play dress up. Sadie wasn't hip on putting on the frills, but Kin loves it

The girls were in the water as much as possible

We water colored, had picnics outside, watched movies, and had a really good time. The girls stay about 10 days. We then picked up Jeni and Thomas from the airport and drove to Cache Valley where Sadie and I stayed a couple days with dad and then had a cook out and did fireworks with my kids and grand kids.

School year scrapbook page & First Eye Glasses

2010-06-08T22:02:00.003-06:00

A page out of Sadie's scrapbook from pre-school
Sadie always colors, paints and draws with such intent.

Sadie wearing her new glasses for the first time.

We found a pink wading pool for Sadie.. it's part of her Birthday
late, and she loves it!

Sadie got her glasses today. She growled at the technician at first, but we kept telling her how pretty she was and after that she loved them and was even more excited about saying hi..hi.. hi.. to everyone at the pharmacy and the grocery store. After we got home, that was a different story... I had to go looking for them several times, but I am surprised she has worn them as much as she has and in time I think she'll wear them. It's hard to fit her tiny nose and funky ears and head... they slip off her nose a lot. Maybe she'll enjoy actually seeing the world a bit clearer now.

Yesterday was a challenging day to say the least. Sadie plays in her poo when she gets a chance and I generally try to watch her close and get her changed before she gets time to think about it, but last night I didn't think she'd go and when I went to check on her she had finger painted her Television, the drawers, and herself..... We went right for the tub and I spent the evening disinfecting and cleaning up. I handled it well, but man... I cried later on, and laughing now... I guess it's the artist in her. She loves to fingerpaint and maybe we need to do that with actual paints at home more and maybe get out play dough, etc., and experiment. She loves to color with sidewalk chalk. The girls next door, ages 11 and 14, came over tonight and colored on the driveway with her so I could get my petunias planted out front without having to chase her down the street. She heads right down the sidewalk to the church or the school playground!!! She is so at home here. We really do love our house and neighbors and ward members. I really do feel in that respect we are where we are supposed to be living. Lexy, the 11 year-old next door, is one of my girls I work with in Achievement days for church. Yes, I have a calling. They called me to be a primary worker about 4 weeks ago. It feels good to be serving again. It really does... and the girls adore Sadie.. and Sadie loves the girls.

I was thinking as I was rocking and singing Sadie "Baby Mine" last night,,, that I'd clean up poo every day forever if we didn't have to go through heart surgery again. I'm really anxious and nervous about it this time... Well I was last time too, but being through it once before doesn't make it easier. My life was crazy even back then, but losing mom, trying to come to terms with the realization that there has never been nor ever will be a male companion I can depend on for any emotional support whatsoever and that God's complete plan is not truly meant for me, makes it all the harder. Dad's going to be there at least the day of the surgery, which I'm very thankful for. I need to call the University Inn and see if I can get a room cheap still while she's in PICU as I can't stay with her those days. It will be here before I know it.

Kinley and Madilyn are coming the end of the month for 10 days, until July 4th, and then Sadie's surgery will be the next week, July 12th. We have to have preop tests done Sunday, July 11, but that won't take long.

Please pray for my Sadie Mae, for me, and for her siblings. Joni is having a really hard time being in Florida, and not being here with her... and Jeni has expressed much anxiety over it as well, and her cousin, Kinley, prays for her best buds heart every night. Jeana, worries too. Jessica, I worry about as well, because Braxton needs open heart surgery this year too for a hole in his heart and I don't want our experience making her even more anxious for Braxton's. I can't imagine life without my lil white tornado.

Time for glasses

2010-06-03T22:00:00.000-06:00

Sadie had failed her eye exam at school. She saw Dr. Albreicht yesterday for an eye exam. I was totally in awe with the man and his patience and instantaneous love for Sadie Mae. She felt his good Spirit about him..ran to him and climbed on his lap and gave him a hug, more than once. Sadie doesn't do this with men. I can count on one hand the men she has been drawn to with such affection.

She saw the light instrument coming at her and started growling at him, shielding her eyes, covering them, and was not cooperative at all. I ended up wearing some bug glasses and danced in a corner to try and get her to look at me so he could get a peak at her eyes.

She is near and far-sighted with a stigmatism. He prescribed her glasses, stating he knows he under prescribed them, but would prefer to under prescribe than over, and we are hoping she will get used to them and enjoy the benefits of actually seeing the world.

Of course with her low set ears and funky head and nose measurements the choices in glasses were slim, but we ended up with the first pair we spotted.. pink plastic frames with nice curved ear pieces that will fit her head fine...and of course... pink will match everything she wears.

Sadie touches so may peoples lives. She beams with love and light, and is drawn to those with good hearts and loving Spirits.

Or course, she kept me hopping in the doctors office and there wasn't even a second to take a picture, but I will post one when she gets her glasses in a week or so. They make her ears poke out some...so makes her Down syndrome even more apparent.

Those who have chosen not to be a part of her life and feel of her Spirit and shine in her light are missing out on so many blessings.... it breaks my heart even more for her, than I, that we have been rejected by someone we both love dearly...who is denying himself so many many blessings by having us in his life.

Every day, minute and second is so precious with her. I live in fear daily if this will be the last. I try so hard to think positive, that she will do well with her heart surgery and I will have her for many many more years to enjoy and learn from her, but I also know how life goes and it's not full of promises of a brighter tomorrow.

I struggle with panic and anxiety attacks, and through my reactions to them have lost the friendship and love of someone very close to my heart. I pray continuously for his forgiveness and that he will be able to truly see me for the good and honest person I am, and that I do have a love for all people, even those he thinks I don't. I honestly strive to be a good person and do what is right. I'm facing, and have been facing my greatest fears in life and that is abandonment, being a lone, and never knowing true love. I have a tender heart and get hurt easily and react badly to rejection.

If God will let me have more time with Sadie Mae I promise to get over these fears and never, ever, ever, ask for or seek the love of a man again. She has all the love I'll ever need. Yes, a good loving man in our lives would be welcome, but I'm already far more blessed than I deserve with my awesome children, grandchildren, good family and friends, and for the blessed opportunity to be Sadie Mae's earthly mother.

I do know if God does call her home it will be her time and his will, and through a very vivid dream where mom came to me in the hospital after being told she wouldn't make it through the night...put her arm around my shoulder from behind and told me... that it would be okay that she would take care of her and love her. That dream is with me daily.

Losing mom last year, losing the love of my life through his choices, and now the fear of losing Sadie Mae... is forcing me to face my fears of being alone, abandonment, and losing the love I crave.

I know my Heavenly Father loves me, but I'm still learning to have faith in his timing and his reasoning for the trials I must face.

Happy #4 Birthday Sadie Mae

2010-05-26T13:04:00.001-06:00

Happy Birthday to Sadie and God willing and good surgeons may she have many many more to bless our lives with. It's a very sentimental day for mommy. Every day God blesses me with her is a very precious gift.

May 22 Grandpa Visits

2010-05-23T10:56:00.001-06:00

Ear tubes in and went well

2010-05-14T22:20:00.003-06:00

The day started frazzled. We headed out at 9:30 giving me 4 hours to get to Salt Lake. Over an hour on the road I discovered I'd left my purse home, so I turn around and headed back home, called the hospital, bawling, and they worked it so we could still get the surgery done today, which I'm very thankful for because I'd have to change her heart surgery as well.

The surgery is so simple, taking less than 20 minutes and
Sadie did really well, but because of her heart they are keeping us overnight in observation. The nurses attempted calling the doc to discharge us early, but he didn't answer, so Sadie has been rearranging the floor and climbing the walls. I'd gladly make the drive home in the middle of the night. I'm not looking forward to 4-7 days in the hospital with her in July after open heart...nothing slows this lil chickie down.

Thank you to my good friends and family for your support, and for the prayers. I have felt the strength it has given us and blessings to get through a simple surgery, yet stressful as well.

Doubly hard today is that it is the year mark of my mom passing away. Life here is so short.

Heart Surgery Date Set

2010-05-11T10:09:00.000-06:00

Sadie's open heart surgery is scheduled for Monday, July 12th.
She has to be 6 weeks out from her ear surgery and stay fairly healthy til then.

So, ear tubes this Friday, May 14th and then the open heart July 12th...both at Primary Children's Hospital. Hopefully with the ear tubes in she won't get sick and can stay off antibiotics and build up her immune system.

Pray for Sadie Mae

2010-05-09T15:12:00.004-06:00

Sadie is having tubes put in her ears May 13, next Thursday at Primary Children's,
and I'm awaiting scheduling at Primary's to call me with a date for open heart surgery
that needs to be done in the next 2-3 months due to a newly developed condition,
in addition to her pulmonary hypertension and leak. I don't have a surgery time for Thursday yet, so I don't know if I"ll head to SLC Wednesday or not, but they will keep her overnight due to her heart.

The reasoning for doing the ear tubes first is that she has had so many infections since her others fell out in December that she is immune to nearly all antibiotics, and still has a hole in the left ear, the smallest one, so if we did heart surgery
right away it would be labeled a "dirty surgery" and antibiotics they load her with wouldn't do any good to ward off endocarditis or other life threatening infections from surgery.

On her routine yearly followup ECG they found a subaortic membrane with a pressure of
over 60, with high normal being 20. This has never been seen before on any of her studies and is congenital and can and may have damaged her valve, which we won't know until she is in surgery. There is the possibility this will regrow and will need removed with more open heart surgery in the future. He took her off her bp medicine for her pulmonary hypertensionfor now as it isn't doing any good because of this other problem...

What the cardiologist told me is very concerning is that this has never been seen before, that it showed up suddenly and large, and she is at risk for heart attack, etc., You can actually see and feel the thrill in her throat where the pressure of the blood is pushing through this aorta. He then asks me if I'm going to be alright.
Well I thought I was until he asked me.

Both this problem and her pulmonary hypertension affect her pulmonary function as well.

You'd never know her heart was in such fragile condition as she runs nonstop and is
into everything as of late. She is saying more and more words, carries her stool around with her to do "dishes" for me and clear cupboards. I can't believe she is turning 4this month. She is still very much a 2-year-old.

Life is so fragile. Please handle it with prayer. Please remember our Sadie Mae in your prayers.I'm far from ready for her mission to be over here on Earth. I've always feared that God would take her back home once I got my life in order and Temple ready again, and now that fear could very much be a reality.

Life was looking so promising for a short while there and I finally got us a home, and now not only Sadie's health, but the one person, next to God, I need right now, has turned his back on me.

I'll get through this. I'm strong... (like that makes it all better... it's not..) Being strong does NOT mean you don't need someone to hold your hand.

Our Visit To Jessica's

2010-05-01T13:37:00.006-06:00

This would be after we got home on Monday, April 26, Sadie decides she wants to dress herself, and she's gooood. lol

My Tulips bloomed Pink, Imagine that! I knew this was the home for me!!

We took Baylee Sadie's crib and picked up Sadie's new bed and put it up in her room. She loves it!!!

Sadie in the Cemetery. We drove to Honeyville from Eagle Mountain to visit my mom's grave on Sunday. It was my second time back since she passed away last May. The tears flowed all day. I got the hate e-mail from the boyfriend ex upon my return to Eagle Mountain that night, and then the news of Sadie's heart condition and upcoming open heart surgery the next day. I've been a wreck since. Too much to take in, mourning mom with the visit to the cemetery, learning my boyfriend has dumped me through his ex-wife and that she is coming back to him, and Sadie needs unexpected open heart surgery again for a whole new problem. When it rains.. it shits!!!

Me & Baylee Ann at the playground.

Baylee Ann posing for an Anne Geddes photo shoot..lol Dang she's cute.

Braxton & Sadie Mae having a blast. They played so well together. Both will be having open heart surgery this year. They have more of a bond than just Aunt and Nephew...

Braxton and Sadie Mae totally faking asleep. Those two together do not sleep!

Braxton and Sadie Mae in the toy box.. best part of that is.. Sadie couldn't climb out. Kept her out of trouble for a bit...lol

Beautiful Baylee Ann

This would be Me, my granddaughters, Harlyn (Jeana's girl, who is very tired) and Baylee Ann (Jessica's daughter) On Friday when Sadie and I arrived in Eagle Mountain.

Yearly Cardiology Checkup Results April 26, 2010

2010-04-28T15:41:00.004-06:00

Sadie Mae had her yearly cardiology checkup on Monday with Primary Children's, which did not go well. They discovered a new abnormality that has never been seen before on previous exams or during her first open heart surgery. She has suddenly developed a subaortic membrane with a pressure of 60++, with high normal being 20. She needs open heart surgery again within the next 2-3 months. The big concern is that it showed up suddenly and large, and it may have damaged the ventricle. I had a feeling for a week beforehand we wouldn't have good news, so mommy is a wreck. We spent the weekend with my daughter Jessica, and Sadie's nephew and niece. Sadie and I made the long drive to honeyville to the cemetery and I cried all day Sunday with emotions of missing my mom. Sadie needs ear tubes surgically put in before heart surgery. Found out yesterday she has a hole in the left ear drum. She is resistant to most all antibiotics due to so many ear infections in the last few months, making heart surgery more risky (and what they would call dirty surgery) until tubes are in. I'm a wreck... behind on work, but I'll do what it takes for my Sadie Mae....

We had a good time with Baylee, Braxton and Jessica, and I have some fun pictures I'll post later. Sadie and Braxton ran nonstop... laughing. Baylee is a doll and I couldn't hold her enough. I have the best kids and grandkids a mother could want. I'm so thankful for the good relationships we have. I'm truly blessed.

Another Day in... the .. Wind

2010-04-05T18:14:00.003-06:00

Monday...Monday... can't trust that day...

Sadie got on her new bus good. It comes an hour earlier and yet we live closer to the school. It comes for her at 7:30!!! holy cow... that means even earlier bed time.

We are settling into our home pretty good, but not without stressors. The home had a washer and dryer in it, but I don't like them and brought my own. I pulled out the washer okay and got it outside, but the dryer is a gas one and I have no clue about unhooking a dryer from a gas line. I called dad..and he told me what needed to be done, but worried about me doing it, so the dryer still sits. The fridge and dishwasher are coming tomorrow. They will install the fridge, but not the dishwasher, so there's another handyman job for Miss Priss girly girl, Julie. I bought a shovel, rake, pansies and a bleeding heart today, however, they cannot be planted because it is currently snowing and blowing out. I also have 2 roses bushes sent to me as a house warming gift by a dear friend that I need to plant, and I need to be out in the dirt to relieve some stress.

However, this is Sadie's blog and I need to save my whining and such for my own personal blog. However, my stress has affected her. I'm so worried she's going to grow up thinking her name is Sadie Damnit. Days go by without having a conversation with someone who can say more than hi..hello... bye bye.. see ya... Easter Sunday was rough.. Sadie had a kids meal with fries for Easter dinner and I had a baked potato and broke into tears in the midst of eating it, missing my mom's sweet n sour ham...and the memories of Easter's past with my mom.. the center of everything. The true meaning of Easter hit home hard and though I truly believe in the resurrection, there is this doubt... where is mom really? will I see her again? is she okay? I miss her so bad it hurts everywhere. I used to do my best work at night, but now by the time evening comes and after I've fed Sadie, cleaned up after Sadie, chased after Sadie.. said NO SADIE NO.. don't.. stop that.. get out of that... so many times I feel its my only vocabulary, and I've rocked her to sleep and put her down, listening for her breathing and make sure her cough isn't anything much than just phlegm and not more respiratory problems and over-worrying, and find myself weeping and wishing someone could rock me to sleep and brush back MY hair, kiss me and say ... Julie.. you are trouble, but I still love you and need you in my life....but I spend endless hours alone in front of this computer, trying to concentrate on work, and not let the lonely hours get to me. The worries of parenting are endless. The worries of parenting a child with disabilities and being a single parent carrying the all around load wears on a person, add many of lives changes, a death of loved one, searching and trying to find where we fit in... and the list goes on wears on me, and I long for someone to say.. Julie you aren't alone.. I'm herd for you... or just hold my hand.. hold me... embrace me with strong arms and feel truly loved would do wonders for my weariness. anyway... again.. This is Sadie's blog and I'll stop here. Though I love Sadie more than my own life...I need a break occassionally. I don't know how to find the balance.

Sadie's learning, in spite of her getting into so much with her exploring. She now plays with her dolls more, kissing them and tucking them in bed and role playing. Her new word is "whoa"... thank goodness it's not Sadie damnit...lol I need to stop that. I feel such guilt when I lose my patience and emotional control.

Spring is here and I'll be in my yard soon and we will have the house together, and I'll be more settled. I know I need to reset my mindset... and tell myself over and over I can do this alone, and quit trying to turn to a certain someone for things they cannot provide me with and that is love, reassurance, and a few sweet words. I need so little and yet it's too much to ask...

There's no place like home.

2010-04-03T20:31:00.002-06:00

After three exhausting days of packing, loading the van, unloading the van, tripping over myself and over Sadie, trying to work in between moves, sore muscles, bruised body, emotional roller coasters, dropping my phone in the toilet to swearing at the Qwest rep on the phone we are finally all moved. Part of the load from last night is still in the van. I veggged and piddled around the house today, and watched the conference sessions today, and took it all in, yet being very emotional with the topics and the spirit of things. I'm truly blessed to have had the help of my realtor's son and his friend, who moved my bed, desk, washer and dryer for me. I have a very hard time asking for help, let alone accepting it, but there are just some things I can't do on my own. I moved the old washer outside by myself, but I didn't dare attempt unhooking the gas line on the dryer, so I'm stuck there.

For the most part I haven't really thought much of it being the Easter weekend. Jeni called with her busy stuff going on asking how to do layered Jell-O and such, and then realized it was the egg hunt at dad's today with family, and I caught myself crying a few times, realizing mom's gone and I'm away from family, and yet I'm the one who moved. We didn't even dye Easter eggs. Sadie doesn't realize it's a holiday and they did a little thing at preschool, but, but... well I feel bad.. but duh.. holiday's and weekends are just that way. I try. Moving helped divert my mind for the most part, and when Sadie gets older and enjoys the holiday's and such it will be easier being alone. Having the house and yard will keep me busy and I'll enjoy it. I'll have Kinley and Madilyn next weekend to visit us, which I'm really looking forward too.

However, after the stress of the last few days, moving and feeling like crap when I've lost my patience with Sadie in the way, etc., I've realized my life is so unbalanced. I cherish my time with Sadie, and yet we are glued at the hip. I really need some away time, adult interaction time....I do get some alone time when Sadie's in bed early, like tonight, and yes alone time is nice, but then it's a big reminder.. I'm alone... so was conference.. the talks were uplifting.. I enjoyed every one, but it's still a pointed finger at my single life, my lack of an immediate family life past Sadie and I. Yes, holiday's could be spent some with my children and grandchildren, but.. oh crap. it's not the same. ..and I'm just whining. My life is what it is. My choices got me here. I guess writing this just lets me let it out. I'm blessed. I am. I never dreamed I'd have my own home again. I feel like I've finally come home and my life is nearly complete. It's probably as complete as it's ever going to get.

Sadie has adapted with the move so well. She loves running through the house and backyard, and she didn't like going back to the duplex for loads. I'm where I'm supposed to be and I'm learning to accept life as it is and be happy, and yet...

March 2010

2010-03-25T23:03:00.003-06:00

Saturday morning, March 20th, Sadie woke up in the early morning hours fevering and having some struggling with respirations again, so I took her into the emergency room, to discover she had 2 raging ear infections and upper respiratory infection, still or again, who knows. It seems she is struggling to overcome the illness from last month. They gave her another Rocephin shot, Albuterol and Atrovent breathing neb treatment, and sent her home on an oral antibiotic. She seemed to perk up quickly and the fever only returned Saturday night. She seemed well enough Sunday, so we attended church, which she always enjoys. She loves the people, the singing, and the nursery.

Knowing she has an appointment in Salt Lake at Primary Children's Hospital on Monday, March 29th I've worried we would have to postpone her yearly cardiology check up, ECG and chest x-ray again, but I called the hospital Monday and talked with them again today, Thursday, and took her into our local pediatrician to have her ears rechecked, etc., and make sure her lungs were clear, and now I need to make the call to either go ahead with her appointment Monday or postpone it again. I hate making the call, especially alone.

Today's appointment was traumatic for Sadie. You never really know she is sick until she is fevering and crying in excruciating pain. She gets a little whiney, but no more than an average healthy child does on a daily basis at her age. She was just cranky yesterday and today somewhat, so I made the call to take her in. Well, her ears are still infected and she's on her last dose of antibiotics from last week. Her left ear, which is the tiniest ear canal of both had wax build up and they couldn't really see clearly, sooo they attempted saline irrigation, which she fought and didn't tolerate well. Between me and the nurse trying to hold her down and flush the ear really just ended up soaking Sadie and I with the saline that was supposed to go in a basin I held while holding down Sadie. ha..ha.. right. Well the 2 attempts at irrigation didn't really clear out the ear enough. Sadie had gotten so upset over the ordeal she burst the blood corpustules in her face and now looks like she has broken out with some horrible on her face. The doctor then had to go in her ear with an instrument and attempt to remove the wax so he could look at the ear. It took all the strength I had to be strong and not break down in tears or walk out with her, knowing she has to have these things done for her health.

In the process her ear got traumatized and has bled some since the procedure. We came home with numbing ear drops for pain, another antibiotic prescription and a prescription for the yeast infection that has broken out in her diaper area from all the antibiotic use. Yet, the little trooper only cried some in the car, grabbing her head, complaining some, but in the store and the pharmacy she put on her sunshine smile and greeted everyone with her hell-whoa's and hi hi hi's. Her face looking like she was breaking out in chickenpox. I feel guilty for getting after her for whining. Hell I had an earache a month ago and I was the biggest baby ever. It hurt like crap! and here this lil girl goes around with one for a month and has whined minimally, less than an average 2 year old, and cried rarely. It's so hard to tell when she is sick, until the fevers break out, of course, and the pain is more than she can bare.

I'm anxious to get her cardiology checkup over, and yet I'm so frightened and panicked. I keep telling myself it will be fine and everything will be working well and her pulmonary problems are still stable, but I can't help but fear more loss. After losing mom, going through the cancer ordeal, and struggling with losses and disappointments in my personal life I can't help but fear and have panic attacks over losing Sadie. She's only mine for this lifetime.. I know that. I know my time with her is short... even if she does live to adulthood.. in the life after this she is God's. I'm her earthly mother, caretaker, and nurturer and I feel I short-change her.

She's an example to me. She has no time for her physical pain, disabilities, set backs, and delays. She pushes forward every day, on the run, exploring and learning, and thrilling in the smallest of things in life. She thoroughly enjoys God's gifts to us all.. music, the outdoors, the flowers, the wind in her face. I'm so ashamed sometimes for letting the depression and struggles of daily living get to me.

I've had loss, pain and disappointment, and I'm scared. Things are looking up for us somewhat. Getting our home is a big thing and big plus in our lives. I finally feel I'm where I belong as far as location and progressing in that area, which has taken me years to get here, and yet I don't dare hope things are on the rise and brighter side for us. I'm so used to turning a corner and being wammed with more heartache and troubles.

I've discovered in the last week that I'm even more withdrawn that I thought. My self-worth and self-esteem have dropped even lower than I had anticipated. I have no confidence, not even in areas I was very confident in years ago. I feel so inadequate in so many aspects of my life. I'm afraid to get out there and be fully involved in church again. It's hard to explain.

It looks like I may be closing on my house any day now. The landlord has a very possible renter for my place and I maybe having to move in a hurry next week. I can move most things alone, but Monday's trip to Salt Lake and back, and then working 6 hours, leaves me little time to move. Sadie's health needs to be a priority, but I also need to get moved and things taken care of at both places. I need to just focus on each day.. Sadie's health is #1, work, and getting moved, and I can only take it day by day. I don't know what tomorrow brings. I hate the unknown.

It's ironic... for someone who has always hated moving, change, new things, new places, and being more of an introvert than anything.. I've sure put myself in situations over the last 6 years that are very very very much out of my comfort zone and increase my anxieties tremendously.

I miss having a councilor. The state provided me one when Sadie was in the up to 3 program to help cope with a disabled child, single parenthood, and losing my mom, etc., and now I'm on my own. I lean less on a couple people I really leaned on emotionally and have learned to not count on them... and yet I long for their constant support, but I know I will never have it.. and learning to let go is a struggle.

Home Sweet Home

2010-03-06T16:30:00.002-07:00

Sadie and I are truly blessed! We got our home!! We are truly blessed! I can't believe this house came on the market and my bid was accepted over the other bid made on it. My fingers are itching to start digging in the dirt and planting everything I can squeeze into this adorable yard and set up house in our new home! If all goes as scheduled we will be moved in by the end of April. Happy Birthday to me!! One of my biggest dreams is coming true. I, Julie Ann, is almost a home owner, and I did it all by myself!!! It's such an indescribable feeling for me. Having a place to call home is such a comfort to me. I finally feel I've come home. This is where I need to be. It feels right. It feels good. God is blessing us. I can feel it.

I feel ashamed for having my doubts about moving here. I knew it was right, followed through, and then doubted and felt stupid for following what I felt were answers to my prayers. After much prayer, once, again I learned this is where I need to be and I need to repent and ask for forgiveness for doubting my answers. Once again, everything has fallen into place and I found my little home at the right price, the right place, etc., and I'm once again at peace.

Long week/sick Sadie Mae

2010-02-28T19:53:00.003-07:00

Last week seemed very long and yet full of stress and some excitement as well. Sadie missed all week of school. We were in the doctor's office, Monday, Tuesday and Wednesday, but hey we avoided a hospital stay.. Whew. Monday she was diagnosed with ear infections, bronchitis (bacteremia) and a red throat with a fever and cough, and given a shot of Rocephin, and back in the office for a recheck on Tuesday. Tuesday the doctor could hear more crackles in the lung bases, but her oxygen saturations were good so she sent her home on oral antibiotics to top off the shot from Monday. Wednesday she had worsened, fever, lethargic, wheezing, and struggling to breathe, so we were back in the doctors office again with sats running at 83%. However, her white blood cell count had been trending downward, meaning the antibiotics were doing their thing as far as the infection goes. She was given a breathing treatment in the office which brought her sats up and was sent home with a nebulizer and breathing treatments. The first treatments I had to create a new wrestling hold to hold her and keep the mask on her face while she breathed in the meds...lol ... eventually she cooperated, realizing it was opening her airway and helping her.

I felt bad having to drag her to the store, pharmacy and to the medical supply store in the cold and snow, but I had no other choice, being a single parent, but we do what we have to do. It's such a struggle going to bed at night with worry and fear for my child's health, and no one to give me any reassurance or comfort. I wonder if one ever gets used to alone. Beth, and older from my ward back in Smithfield, says no..it's always hard, no matter how long you have been alone nor how young or old one is. But, I'm strong, so they say. I have to be, by force.

The realtor called with a home that had just come on the market, cheap, a foreclosure that was a lot like the one home I have been drooling over and wanted me to see it, and I finally did and fell absolutely in love with the place. It screamed Julie.. Julie Julie.... soooo... I made an offer on the house, and I've been on the edge of my seat, waiting anxiously for the bank to decide between my offer and another, making for a long weekend. I've driven to the neighborhood and by the house every day since, afraid to hope, and yet afraid to not hope. I really need this house. I really need a place to call home. I'm the type of person who needs roots and a place to call my own, to be at ease. I need this house. Sadie needs this house. I've been praying for it.

We made it to church today. Sadie's still a bit grumpy, still quite congested, and coughing, but has been without fever for a couple days, and we really needed to get out. Sadie so loves church and being around other people. The members in our ward really enjoy her and don't mind telling me so either. The people in the drug store smile big when they see us coming and know Sadie by name and character...lol She brings so much happiness to those around her. Her light just shines. Jeremy blessed her to be a ray of sunshine to all she comes in contact with, and that she is. She's my sunshine, my hope and my life.

Sadie was supposed to have her yearly cardiology appointment with Primary Children's tomorrow, but due to the respiratory illness she has to be better for 4 weeks before they will risk sedating her for the echocardiogram, so we have rescheduled that for March 29th, and will probably spend the weekend with Jessica and Clark, and enjoy sometime with them, Baylee and Braxton :) <3 <3

Spring has to be on it's way soon... my fingers are itching to play in the dirt and grow some flowers and veggies.

Pulling my head out

2010-02-20T10:19:00.002-07:00

Since I've been pre-qualified for a home loan I've been on a roller-coaster of emotion of emotion, torn between where I want to live or "should" live. I feel bad in some ways in that we see less of my family by living here. This is something I've never taken lightly. I've contemplated moving here over the years. I thought it was for love, but I think maybe that person was just my key to getting here, that maybe we weren't meant to be at all. However, I've grown to really love this place. It feels like home. Though, some still question my logic and sanity over my decisions, but I'm comfortable here, and I feel it's the right decision for Sadie and I to settle here. Sadie is doing well in the school system here and her therapists are just awesome. People are kind to use. I really feel this is where we need to be. I feel free of some of my painful past. I really need this new start for Sadie and I. It doesn't mean I don't love my family or miss them terribly, but they have to live their own lives, and I need to live mine where we feel we are led.

I really think in buying my own home is also a breakthrough for me in that I can finally break away any hopes for this relationship that has had me in distress for years. I can take care of me and Sadie. I've always known that. I didn't want a man to provide for use physically and financially. I wouldn't let one. I'm very very stubborn that way, and when it comes to Sadie's care I'm even more stubborn about it. I've been accused of just wanting a man for his home, $$ and to be a father to Sadie.....well those accusers don't know Julie well at all! Hell will freeze over before I'll lean on a man for any of those things, and I refuse to live in another woman's home. I want a home that spells "Julie" all over it with my personality, my tastes, and not an EX's.

Yes, I believe I'm finally healing from a lot of things.

I have a sweet female realtor I relate to well and who is being very helpful. She is lining up homes for me to visit. I'm really not fond of a condo, until she mentioned a swimming pool, but even then I need more of a yard, privacy, etc., than a condo can provide. Twin homes seem to be a big thing here and affordable, so I'm looking into several of them. I found a couple dream homes. One is out of my price range and the other one is sooo Julie but it's in Panguich which I think is too far out there for Sadie's best interests and care.

I'm talented. I'm not brilliant, but I am smart enough to take care of us without being a burden or dependent on family. I will not become a user or dependent leach to my family. It's selfish and not right.

I found Sadie a castle princess bed and I can't wait to start in on decorating her room. Yes, she is spoiled and will be, but she will also be disciplined and learn to do as much for herself as she can. She will be more confident and content if she feels she can be like everyone else and pull her weight in some ways.

She is so appreciative of the little things. Music brings her much joy. She teaches me so much every day about the simple things in life, and I plan on doing more of it.

I can't wait to get us settled. I'm going to plant flowers in every corner I can squeeze them in, some vegetables, and climbing roses and ivy over the fences, put in some fountains or little ponds and have gold fishies. I'm going to surround a room with shelves for my dolls, and sew and quilt, and play dolls with Sadie, play my piano, teach Sadie to play, dance and sing with her, and take her to church and teach her about Jesus, color, draw, paint, make crafts, visit family, maybe tour canyon lands... I wanted to share this all with a good man, but I can't find one who wants to share it with me....sobeit.

I'm going to keep moving forward, be a good person, do what is right, get back to the Temple, and God will take care of us. I'm afraid at this point in my life he's the only man that will. I didn't need a man for $$ or their home, etc., I needed his companionship, emotional support, and love, but few men have that to offer me. God knows my heart. Yes, I need a man to get into the Celestial Kingdom, and if I live my life as such God won't deny me that privilage. Maybe not in this life. I'm done fretting over finding one. It's just killed my self-esteem and confidence when I'm turned away, rejected, left alone and un-thought of for months at a time. Obviously it makes for a very selfish man who can only show up when they need you.

I'm on my way to getting better, emotionally, physically, mentally and spiritually and nothing is going to stand in my way, and if that means shutting men out of my life then that's just how it will have to be. I will not be hurt again by any man. I'm worth a lot more than I get credit for.

Sadie is my world. She is my Angel and my best friend for life. All of my kids are. I adore my grandkids and I will spend time with them too.

Julie and Sadie are going to be okay. We may be slow, but we have good hearts and we know what is right. We are going to make it.

February already

2010-02-17T21:15:00.004-07:00

The highlight as of late as attending Baylee's blessing Eagle Mountain. I'm so very blessed with wonderful responsible children who are successful in caring for themselves and their children. I must of done something right somewhere.

I loved spending the night at Jess and Clark's. I got to hold and love Baylee and play with Braxton and really enjoy them. The blessing was really nice, and it was good to see most of my kids and grandchildren again. I really do cherish and love my family more than they know. I'm truly blessed with good children, in-laws and gorgeous grandchildren. I'm so proud of Maeleigh at the piano with her daddy. They both have inherited something good from me. :) <3

Well.. wah lah. It is the middle of February and the new year is passing by once again. Valentines Day for me was just like all the others. It's a stupid holiday. There is no romance and true love. It's all one big joke.

Update in the relationship department, is that I did not move ahead with the relationship I was talking about in December's notes. I'm not moving ahead with any relationships anymore.

Dad got me thinking about buying a home again and he has looked at a few in Cache Valley for me and talked to his banker. I went ahead and filled out an application for a loan, expecting to be turned down, but wanted to know where I was at credit-wise and what I needed to do to obtain a loan. The loan officer called me yesterday afternoon and told me I pre-qualified for a loan and to start looking at houses, and he'd send me the loan papers to start working on. I was in total shock. I still am, and yet I was so excited I practically danced through the supermarket with Sadie. We are finally going to have our own home. I've ached and ached for a place to call home of my own for 6 years now. Tomorrow, February 18, will mark the 6th year of my divorce. I started searching for homes online and I found myself looking at homes here in Cedar, and made at list of many I wanted to look at, etc., and it felt so good and so right. I don't know why. I have no reason to stay here other than I like the small town, the good air quality, the warmer weather, the people, etc., but my kids live in Cache Valley and I miss them. I called my dad and he was excited about the loan, but not about my choice of where to live, so I told him I'd think more about it. He reminded me to pray. Well, ya I have earnestly prayed about this, just like I did about my move here. Obviously, I don't recognize my answers to prayers.

I need a home. Sadie needs a safe yard to play in, a sandbox, a swing set and stability in her schooling and all. I felt she was doing really well here, but what do I know. I'm a loser mom, and that's all she's got.

When I think of staying here I feel at peace and at home. When I contemplate moving back to Cache Valley I get confused, panicky, nervous, and very uneasy. Many have their own opinions and interpretations of why I feel the way I do. I thought my prayers were being answered with such peace. I've tried really hard to be open minded and weigh the benefits of living here versus Cache Valley and the benefits of living in Cache Valley. It's not an easy decision. I'm torn, and yet like I said.. I get peace when I pray about staying here. Does that make it right? I once thought so. I thought that's how prayers were answered... but apparently many think I'm delusional. Maybe I am.... but I guess I'm a big girl and can make my own decisions whether it be a mistake or not.

Christmas 2009

2010-01-02T11:46:00.004-07:00

Christmas morning we woke up on our usual schedule, with Sadie not even realizing what it was all about still. She wouldn't open her few gifts, and when I opened them for her the cheapo toy shopping cart kept falling over and frustrating her versus being able to push George around it as I had anticipated she'd enjoy. Her bathtub George's arm fell off and I couldn't get it back on. I broke into a flood of tears, typical for holidays, stuffed the rest of our stuff in or bags and hit the road. Santa had previously arranged to meet us in Provo at Maverik, after which Juanita and Gordon invited us to spend the afternoon with them and their family/friends. Sadie wasn't sure about Santa, but she seemed to enjoy her day. I had good company.

We then picked up Joni and Steven at the airport at 8:00 Christmas night. Sadie understood all too well we were picking up Joni and she was way excited. We finally got to meet baby Ben and were very very happy to see Joni, Steven and Brookln as well. I miss my family so much. We seem to be spreading out more and more, which is life and how it should be. Everyone needs to find their place in life and yet still have bonds and longing for home. We stopped at Jeremy's in Hyrum and visited and then dropped Joni and family off at Jeni's in Logan, and Sadie and I went onto my dad's.

The day after Christmas I had all my children together at the chinese restrauant and finally met Baylee Ann, who is absolutely beautiful. I have beautiful children who are reproducing very beautiful grandchildren. I'm truly blessed. Sadie was so happy to see everyone. We then went to the gym to play, where I had planned on getting my family picture, which didn't happn. Kurt and Harlyn went home for a nap, and then later Jessica's family headed out, and who knows when or if I'll have them all together again. I'm disappointed. My pictures are important to me, but don't seem to be to anyone else. I'm proud of my kids and grandkids. They are all I have. I'm not the greatest mom or anything else for that matter, but I do have awesome family. I'm more blessed than I deserve.

I took 307 pictures and couldn't wait to get home to post them on my personal pc and brag about them on facebook. The kids got a few of me on the trampoline...lol embarrassing. However, I'm finding I don't recognize myself in pictures like that anymore. I feel I'm losing myself again, outwardly and inwardly.

We drove home on the 30th. The first 4 hours were easy driving with only a few snowy spots, but the last 100 miles were pure hell. I got in a blizzard and slick roads, with cars off the side and stuck left and right. I cried ad prayed my way home and haven't really been able to pull myself together since. I think it was the straw that broke the camel's back so to speak. Yes, dad called and a few of my kids to make sure we were okay, but coming home to an empty home, no one to take me in their arms and hold me, reassure me all is well, etc., hurts. I enjoyed my time at home, and both Sadie and I were happy to be back home, yet there is still such an emptyness about our lives. Sadie knew where we were before we exited the highway. She really likes it here. The air back home was hard for me to breathe and I never could really get warm, and I'm sure it was much worse on Sadie, so I guess living here for that reason only is good.

New Years Eve Sadie went to bed early and I spent the evening alone. Took down the Christmas decorations and cleaned yesterday. Got sick last night and I'm still curled up in bed today, wishing I could rest, but Sadie is grumpy too, can't tell me what she wants, what's got her crying (which she never does unless she is in pain, or what she needs, and I've had it today with being the strong one, with having no moments of relief to rest or just have someone to worry with me, or cry with me or laugh with me.

I honestly don't know what to think, feel, trust or have faith in anymore. I hung onto a lot of faith over the years through much discouragement and many trials, and I just can't trust that faith anymore. I don't have it in me anymore.

I gave dating one month, had a few dates, some nice and one pretty lame. I don't want to spend my days on earth alone anymore, but I don't like the dating and the games played either. I'm not worthy enough of a "good" LDS man, and I'm seriously considering a serious relationship with a non-LDS member. I've found over the last several years out of the men I've known I've been treated like someone special and worthy of their time and attention by non-member males of the church than members.

I really don't understand. I clearly can see the the eternal aspect of things, Sadie's worth and the honor it is to be her earthly mother, and members of the church supposedly realize who she is and what her purpose is, and yet there isn't a male member out there who would stand up and be proud to be her earthly father and accept the blessings earned with the honor of having her and me a part of their life.

So, there isn't any male member out there that I can find that I'm compatible with who would be accepting of us, or who would even give us a chance at getting to know us or find out for themselves who and what we are, and what our worth is, and who isn't ashamed to be seen with us and love us, and I don't want to spend my earthly time here lonely and alone anymore. I want to share our life with someone and feel a part of an immediate family and be loved, happy, and enjoy life, someone to make plans with, build a home around, to snuggle up to at night, jump in the puddles in the road, dance in the rain and kiss me in the moonlight. I deserve it.

I still have a strong desire to be a good person and strive to better myself, but I'm not going to hold out the remainder of my last 20+ years for a male member of the church who can look past their pride and snobbery to see the real picture and take the time to get close to someone who could have been their best eternal companion ever. I have a lot of love to offer a good man. I'm honest, faithful, trustworthy, spiritual, very giving and loving, and I have the strength and will to do what it takes to make a healthy relationship work. I'm not finding anyone who truly wants that in a woman.

So, bottom line is.. I've pretty much decided to move ahead with a relationship with a non-member friend, who to me is just as good or better than the male members I've dated or attempted a relationship with. This person makes me feel special, worthy of someones time and attention, and why shouldn't I accept it that? A Temple recoomend is no true proof of being a truly honest good person, especially when it is flaunted. The signs of a good kind heart are all I need, and I think I may have found that. Some say I'm playing with fire and maybe I am again, but I've risked a lot to win the love of a supposedly good-hearted "worthy" man, who has rejected me and treated me like they have never ever known me. What makes him better than this man who says he'll never leave me, who can see their is something special about me and wants to explore that specialness and find out who I really am and love me for who I am?

Being a member of the church doesn't automatically make one a good person. Yes, the gospel is true, and there are a lot of very good mmembers of the church, but there are also a lot of prideful, snobs, who cannot truely live their religion.

I'm hurting. I'm hurting horribly and the only man I've found who has any compassion towards me and what I'm going through is not a member of the church. Shame on my supposedly "good" male member friends.

Bless this man, who cares, who has shown his concern for me and who wants to see me happy.

Life isn't meant to be lived in constant pain. I'm going to change that about my life this year... even if it means forgetting a few strong things and people I have ahd a lot of faith in, who I've already cut off parts of my life. It hurts.. I hurt more now than I have in a very very long time, and big changes are coming. Some who know me may not like them, but I refuse to live in loneliness anymore. I refuse to be a misfit and misplaced. There is a place for me out there somewhere and it may not be what others call ideal.... and up to church standards... but I can't take anymore. I just can't take anymore hurt inflicted by supposedly good men.

Where are you Christmas..

2009-12-10T14:46:00.002-07:00

Sadie got her school pictures back and we are really happy with the way they caught her personality.

It is a tough time of year for me right now with losing my mom in the spring, making this move to Cedar City and making myself out as a complete fool over someone who never really wanted me to be a part of his life anyway. I really felt strongly this was the right thing to do and that he was my one. I followed what I thought was spiritual guidance, only to be turned away like I'm diseased. I feel more displaced and lost than ever. At least I guess now I can get him out of my system and move on.

On the flip side of things... Sadie is so amazed with her surroundings this year. She is discovering so many things for the first time. When it snowed last week she wanted to sit in it and play and was mad at me because I wouldn't let her because she doesn't have snow boots, etc. She absolutely loves the Christmas lights and to my surprise does not touch the Christmas tree. She gives me a reason to get up every day and carry on. She makes me smile and laugh through my tears. Her hugs and kisses are the best. To me it doesn't even feel like Christmas.

I'm at a total loss of what to do with my life at this point. I don't even dare ask God. I'm not sure I have the ability to truly interpret his guidance anymore. I want to do what is right more than anything.

I've gotten back on an LDS dating site. I really hate the search and the weeding through men to find the right one. I wasted the last 5 years on someone who only wanted his wife back from day 1 anyway, and I was just his backup girl when she wasn't available. I don't know that I can trust anyone with my heart again, but I guess I'll try. Weeee-haw....

However, I am thankful Sadie is doing so well. She has hardly been sick this last year and is growing and learning. I'll see all my kids the day after Christmas and I can't wait. I have 2 grand babies I haven't met yet. I'm picking up Joni and Steven at the airport Christmas night and going home to Cache Valley then for a few days. I miss my kids and grand kids horribly.

The school called last week and they are moving Sadie out to Three Peaks Preschool in Enoch because the one she is enrolled in now has too many kids, so they are taking pretty much Sadie's bus out to Enoch. They are going to send her aid with her so the change won't be too bad. We meet with her new teacher tomorrow and the transfer will take place the first of the year. I really don't want to drive out that way tomorrow. The thought being even remotely close to his place makes my heart leap and my eyes weep. Part of me is thinking if she has to trade schools anyway why not just go home, but most of me just says it doesn't matter where I'm at.

Onward ...we go.

December 2009

2009-12-04T21:15:00.001-07:00

November 2009

2009-12-04T21:06:00.001-07:00

Halloween 2009

2009-12-04T21:01:00.001-07:00

Tis the Season to be Snotty ... luh..luh

2009-10-15T21:26:00.002-06:00

As usual I've been fighting congestion and runny nose, and this morning I woke up fevering and listless, so off to the doctors office we went. The doctor said it looked viral, but my eyes were infected so she was going to only give me eye drops, but then decided to run a CBC and as it turns out my white blood cell count was borderline high with a differential shift, leading to possibly bacterial infection, so I left the office with 2 prescriptions for antibiotics. They also ran a H1N1 (swine flu) nasal swab test. I did not like the bandage on my finger and kept poking inside it and got blood on my other fingers, and mom eventually helped me take it off and clean my hands.

Earlier in the year mom kinda thought everyone was overreacting about H1N1, that it wasn't going to be anything worse than the seasonal flu is. Well, she was wrong. She made the mistake of watching the news today and getting the stats on deaths and risks it is to the young and those with underlying medical conditions such as I have, and she had a full blown panic attack.

The new doctor and PA in training were impressed with my heart murmur. Most doctors are. I have a very musical heart.

After the doctors and the pharmacy mom got medicine down me. I was fevering when I went down for a nap and when she checked on me a couple hours later my clothes were soaking wet in my sweat.

I guess I kind of made the final decision on whether we'd go home to Cache Valley this weekend. We miss the girls soo much, grandpa and Toto too..

It's the last day of the pay period and of course mom isn't going to make her line count.

Mom said she wants to just lock us indoors till spring and pray I don't get really sick. She says we've had too many losses this year.

I woke up from my nap a little more chipper. Enough to trash the apartment again at least and give mom lots of hugs and kisses.

I'm the light of my mom's life.

October is Down Syndrome Awareness Month

2009-10-06T22:19:00.003-06:00

October is Down Syndrome Awareness month, as well as Breast cancer awareness month; so hug an Angel and buy Pink, PinK, PINK....

We established care with a local pediatrician yesterday and got my flu shot. We really like Dr. Dowse and he said I'm just absolutely adorable, and mom told him, yes, yes she is and she knows it. tee*hee.

I've gained 3 lbs since we moved here! I now weight 30 lbs and I'm 35 inches tall, which puts my weight in the 30% range, height 5%, and weight for height 90%, short and stout.

Dr. Dowse also referred us to the eye doctor, ENT doctor and dentist, and informed us that a cardiologist from Primary Children's comes to St. George monthly, so that will save us a trip to Salt Lake in the spring for my EKG.

My right tympanostomy tube has come out and is just sitting in the ear canal, so I may have to have that replaced. If the ENT doctor feels comfortable with sedation and my heart condition we may have it done here versus Salt Lake, but we'll see. It makes mom nervous. We also may need to have a sleep study done too.

I have an appointment with the dentist Monday, but not the other doctors as of yet. There are so many adjustments and changes in moving.

I'm really wanting to talk as of late. I try singing Baby Mine with mom when she rocks me to sleep, trying to move my mouth, lips and tongue like mom does as she sings. Friends sent me a dancing Kids Songs DVD and I love to dance. I've learned to kick one leg out in front of me and I try to jump, which are some things physical therapy have been working with me to learn.

I love the Halloween decorations and love the lighted pumpkin on our porch. I really got upset with the windstorm when it blew my pumpkin off the table and we had to bring it in. Mom said this tying everything down will take some adjusting to. In Cache Valley everything just froze in place!!!!! I get really excited when mom turns the lights on at night. Christmas lights are going to be totally amazing. It's so exciting to notice all the wonders of the world suddenly. There is so much to take in. What a beautiful world God has created for us to live in.

Mom gave me popcorn last week for the first time and I'm thinking I like it, which surprised mom because there are not many foods I do like.

My skin is dry here. My cheeks and chin are chapped from the wind and dry air. We keep the humidifier going night and day. However, I like the breeze. I raise my hands high above my head, look up and squint my eyes and squeal as if I am flying. Mom isn't so fond of the "breeze", but when my sisters reported it was snowing in Cache Valley she didn't feel so bad being isolated here. Jeana said MOM don't you dare come back here, Winter sucks!!! But, we'll see. Mom's allergies in the fall aren't kind to her and with it even more dry here she is miserable.

When mom sneezes or cough I try to do the same. I'm starting to imitate more. I even took a tissue and tried blowing my nose. Mom loves watching me learn and catch onto things. I even try feeding mom my food and saying ummmm....mmmm...mmmm to get her to eat it.

Yesterday I stuck my finger in a little boys mouth at school and he chomped it. My aid and teacher both felt really bad. Mom wouldn't have noticed I don't think if the teacher hadn't of called, but yup I have 2 lil bite marks on my ring finger, which turned a little red last night so we are watching it, but we don't think it will get infected. The doctor asked mom if the boy has had his rabies shot. ha..ha.ha.. probably not.. but mom said, I'm sure he had boy cooties.. tee*hee.

Mom has a big box of hand-me-downs for Madilyn. I've outgrown most everything. Mom stuffed me into a blanket sleeper the other night and told me to suck in my Buddha belly so she can zip it up. Same goes for my jacket. Mom said we need to get some new clothes for me, starting with some hoodies, jackets and blanket sleepers. It's cooler at night now and I don't sleep with my covers on.

We are going to have to arrange our time and finances and make a trip to Cache Valley before the weather gets bad. Mom's not sure how many trips Barney can make anymore. We have a box of stuff for Braxton and a box of clothes for the nieces. However, it's kind of hard on mom thinking of going to visit. She misses everyone really bad and all, but it's hard to face that Grandma is really gone. So we'll see.

We are still pretty isolated in our little spot here, but mom says we are going to start going to church regularly and start socializing a little, but I'm working on a cold. It's that time of year where we lock ourselves up in our bubble, outside of school that is now.

We do have a friend here, LeAnn, who has a boy with DS, and they have offered to help out with me anytime mom needs a break. Mom says LeAnn is our Angel Friend here in Cedar City. She has been so helpful and kind to us.

We still get a little homesick. Mom still cries some nights after Kinley calls. We sure miss my nieces and sisters. Yet, we feel pretty comfy here and settling in pretty well in spite of missing everyone and things not working out here like we had hoped, but we still feel this is where we belong.

The beatitudes of friends of exceptional children

2009-10-06T16:58:00.002-06:00

Blessed are you who take time to listen to difficult speech:
For you help us to know that if we persevere,
We can be understood.
Blessed are you who walk with us in public places,
And ignore the stares of strangers,
For in your companionship,
We find havens of peace.
Blessed are you who never bid us to "hurry up",
And more blessed are you
Who do not snatch tasks from our hands to do them for us,
For often we need time rather than help.
Blessed are you who stand beside us
As we enter new and untried ventures,
For our failures will be outweighed
By the times we surprise ourselves and you.
Blessed are you who ask for our help,
For our greatest need is to be needed.
Blessed are you when you assure us,
That the one thing that makes us individuals
Is not in our peculiar muscles,
Nor in our wounded nervous systems,
Nor in our difficulties in learning,
Nor any exterior difference.
But is in our inner, personal, individual self
Which no infirmity can diminish or erase.

~Author unknown~

Sadie's weekend

2009-09-28T12:46:00.003-06:00

After trying for months I finally did it and I can do it repeatedly now. I can fit mega blocks together!!! Mom was so excited... she cried. ha..ha.. and took a picture, of course. She's so proud of me!

Mom also got out my toy bucket and other buckets and let me play in the water outside. Summer's over and we finally got out in the sunshine. Mom and I usually are so brown by now from living at the swimming pool all summer. This year we went 2x. The year has just flown by us. I had so much fun! I also figured out water comes out of the hose and was really fascinated by it. Mom sure had a good time soaking up some sun and watching me play. I don't like to walk on grass or play on grass, so I kept trying to get to the bucket a different angle through the rocks, but that didn't work good, so I stayed on the pavement. I'm so OCD about some things.

Our neighbors invited us over for Michelle's Birthday (the little girl who lives 2 doors down). She turned 4 and got a swing set for her Birthday, so mom and I went over and I played on the slide. I wanted to swing, but I can't balance on regular swing seats, so I stuck with the slide and jumping on their tramp or tried to jump. I usually just sit and bounce, but this time I actually stood up and tried bouncing myself. I'm trying really hard at doing things.

I was really excited this morning to get on the bus. I came home and at first was excited to see mom, but I turned around and looked at the bus and cried, which is very very unusual for me. Mom hugged me and took me in to feed me lunch. I threw my food on the floor and screamed. I drank my milk, but was still very grumpy. Mom noticed they changed my shirt at school, which isn't a surprise. I've been drinking out of my sippy cups really good for a very long time, yet in the last couple weeks or more a lot of times I get too much in my mouth and let it run down my shirt and onto my pants in large quantities, soaking everything. Mom's really puzzled why I'm doing this. Mom tried putting me in my crib for a nap and I threw my blankets, George and my binky out and cried and screamed, again very unusual for me. Mom then rocked me and sang Baby Mine to me til I fell asleep.

Hopefully I wake up happier this afternoon.

But mom has a feeling we need to work on communication and behavioral issues more. I'm so frustrated, and mom is too. She wants to help me, but doesn't know what I want or need. I learn things, do them well awhile, and then don't do them again.

I'll learn.

School does a girl good

2009-09-18T19:35:00.002-06:00

Mom looked in on me yesterday while I was playing in my room and this is what she found much to her surprise. I generally eat and rip up books, yet I was sitting my Elmo chair turning "paper" pages in the book Monsters, Inc., and carefully "reading" studying the pictures. Mom was soo excited she got the camera. Turning pages means I'm learning fine motor skills. I'm starting to take note more and more of my surroundings and how things work. I now say Hi, Hi, along with my yay yay and bye bye, and I grab mom's arm when I want something or hang on the kitchen counter. I'm starting to indicate I want something and learning what communication is all about. I've been struggling for weeks on how to put Mega blocks together, but I'm determined. Mom sits with me and shows me and helps me and sometimes I can do it, but lots of times I just get frustrated and throw them. With lots of patience and persistence I'll learn, just at my own pace.

My New Nephew Baby Benjamin

2009-09-18T19:08:00.004-06:00

Baby Benjamin was born September 14, the day after my Grandpa's birthday, to my sister Joni, her husband Steven and niece Brooklyn. I now have 5 nieces and 2 nephews. Mom is so relieved he's here. Steven is in the Army, but still in training and Joni has been alone in Alabama. We have missed them sooo much since they moved. Mom will feel better now that he's here and Steven is home for a 10 day leave and will be out of training soon. Mom felt bad we aren't in Alabama to help with Brooklyn and the baby. We considered going to Alabama to live for awhile this summer until Joni got settled and Steven could be home with her, but mom felt very strongly we needed to move here, and now she's wishing she'd gone to Alabama. We are more alone now than ever. We still don't know why we are here. Why would God send us here to bring us more pain and loneliness? A test of faith? Mom says it's time for a break. I think we should take a Disney cruise... but mom is thinking, ya me too, only we took out a loan on the only thing we own and that's our junker Barney mobile, to have the money to move here. Now we have a loan to make payments on, are away from family, left our piano behind, and on and on, only to discover we really don't belong here either.

So, I guess we make the best of things while we are here until we can figure plan B, which is to figure out where we want to spend the rest of our days, buy us a little cottage somewhere with a fenced in yard for me to play safely in, maybe get me a trained guard dog, plant flowers, run through sprinklers and play dolls the rest of our days here on earth. Mom says she's done looking for someone to share our life with and be part of our lil immediate family. She says anymore the risks aren't worth it and she won't expose me to boyfriends and men who could harm me, and when mom's crying or sad I'm sad too. I'm very very sensitive to feelings and even when mom tries to hide it I can sense her sadness and pain, and it makes me hurt, and she doesn't want me in that kind of environment. We just lost the last man she'd ever trust her heart with again and who would be kind to me. Mom says maybe we'll move close to Kinley and we can go to school together. I really miss Kinley, and my other nieces. We took a lot of risks in coming in. We came here on inspiration and in faith, and yet even though mom's hurting really bad inside, missing grandma and losing this relationship here, she still feels some peace that she can't explain through her tears. She still refuses to believe it was a mistake in coming here, which she really cannot explain.

Mom thinks maybe we'll go visit Kinley sooner than late October now, but we'll see. Gas is expensive, so going home to visit isn't as easy as we'd hoped it would be. The weekend of the 1st is UEA weekend and I won't have school and we can have extra time visiting.

Besides... October 1 is an Anniversary for mom that won't be celebrated this year or ever. She met her love October 1, here, 5 years ago, and she doesn't want to be here, alone, and sad.

More about School

2009-09-16T11:40:00.002-06:00

I get so excited for the bus in the morning that I don't eat much. I just want my shoes and backpack and out the door. I pause in the driveway when I see the bus coming and flap my arms and squeal. Th love riding the bus. I come home just as excited to see my mom and she is very happy to see me. She says she really misses me when I'm gone, but happy I'm learning so much.

We are learning about colors and shapes at school and I brought the mouse hunt game home and signs to learn for my colors. Mom wasn't too excited. She was hoping we wouldn't have keep learning sign language, but guess what... we are! Mom doesn't think she can learn to easily, but for me... she will. A friend directed us to a link that actually video demonstrations of actual people making the signs, which mom thinks is a lot easier to learn than trying to learn it off a paper.. So let the fun begin.

I'm understanding the word "No" more and more. Order and discipline in school is a good thing. Sometimes people forget I'm not actually mentally 3 years old, but more closer to 2, and expect me to act more mature.

Mom got Direct TV yesterday so now I have a lot of TV I can watch, but I was so tired last night and got overstimulated by watching a show about whales in the water that mom had to turn it off and get me ready for bed. I love water.

I like to have the bath water running when I'm bathing and I can turn the water on myself, so mom lets me run it and when the hot water is gone, my bath is done, and I pitch a fit about having to get out. I'd stay in there until I turned blue. Mom says we need to find a pool around here so we can go swimming and get me some lessons.

We haven't been to church here yet. Mom chicken's out every week. One week I was sick and last week mom was too emotional. So, obviously we still don't know anyone here, and things fell apart with the few people we do know here, and yet mom still feels we are supposed to be here. It's strange.

We miss our family a lot and mom told Kinley that maybe in October we'll go visit on a weekend for the pumpkin walk and take our walk and do pictures at First Dam like we do every year. Kinley's having a hard time with us being gone. She thought she was going to see us when she went to another Grandma's party the other night and she cried and pitched and fit and wouldn't give the other Grandma her picture she colored because she said it was for "her marmma" (which is what she calls mom). Mom cried when Jeni told her how hard it was to get Kinley calmed down. Mom said moving here has been much harder than she thought it would be, especially given the fact that she was possibly mistaken for the reason why we are here and sad about that.

Another thing we have learned here is that I can't leave my sand bucket out or my balls out because the wind blows here all the time and blows things away. We had the mountains surrounding us back in Cache Valley and rarely felt any wind. There are also a lot of rocks!! I love to sit in them and play with them, scooping them up, etc., and I also like putting them in the mouth, which mom says NO to and "pft".

Zoo Day Pictures

2009-09-16T11:33:00.001-06:00

My school year begins August 2009

2009-09-08T12:40:00.003-06:00

Last week I started preschool here in Cedar City for the first time. I love riding the bus and my new aid. I can't wait for the bus to come in the morning.

My new word is yay..yay... yay... and I clap with it sometimes. So my 2 words as of now that I use consistently are yay and bye bye. Mom thinks she heard me say "ok" a few times. Today while I was getting off the bus I tried to say backpack. I learn so much at school. I really like the other children.

Mom has the front room together and the boxes out of it, but our bedrooms still need some work. Mom set up the sewing machine in her room and sewed some burp rags for Baby Benjamin (my new nephew coming any day now).

Last week we had company, Cassie and Braedan. We picked them up in Salt Lake last Saturday at the airport and took them back to Salt Lake this Saturday. Last Saturday we met my sister Jeni, Thomas, and my Kinley and Madilyn at the zoo and had a really good time. I've really missed Kinley. That's the hardest part for me and mom, being away from my siblings and my nieces and nephew. Mom's real stubborn though. She is still holding her ground and her belief that we belong here. I won't argue. I seem quite comfortable in my new surroundings. I love playing in the rocks with my shovel, prancing around on the porch and marching up and down the sidewalk. We are doing okay. Things aren't much different here than they were before our move, other than we don't see family at all versus occasionally. Mom says it may take us awhile, but we'll know where we fit in and belong eventually. Until then we have each other and that's good enough for me.

The zoo was fun. It's really the first time I noticed the animals and when I was allowed out of the stroller I ran... ran... exploring everything. I loved the bears. I even tried to say bear.. bear, but I did clap and say yay..yay.. Mom's favorite part was the carousel. Mom loves carousel's. Mom cried on the way home some. Kinley thought she was going home to grandma's house with us, but she doesn't understand grandma lives far away now and we can't just go to McDonald's every week. Mom says, though, that doing what you feel is right sometimes requires sacrifices and takes a lot of faith and perseverance to go through with things, even when it seems everyone seems to disagree with her decisions.

I've grown some. I can now reach the kitchen cabinets... yay..yay..yay.. more things I can get into and toss around. Mom put the trash can in the laundry room. She's really wondering what she's going to do when I learn to open doors.

I really enjoyed having Braedan around to play with and sometimes annoy when he was trying to play video games and such, but we loved playing ball and such. I love my mom and all, but she gets busy working and doesn't have a lot of time to sit down and play with me. She wishes she did. But, then, kids can be a lot more fun than mom's sometimes. I love to watch videos and I stick my nose right up to the screen and interact with the movies I'm watching. Cassie spoiled me while she was here and bought me a new video about Strawberry Shortcake and springtime, and a new outfit for school. She was so happy to see me. I like to make people smile and feel warm inside, and see their faces glow in my presence. We get stopped often in public by strangers who just want to say hello to me and tell mom what a special gift I am.

That I am, a special gift. Mom thanks Heavenly Father daily for me and the blessing I am in her life. She doesn't feel worthy of me and often feels like she's not giving me all that I deserve, but she thanks God every day for me, for giving her purpose and a reason to smile.

The "Adventure" begins......

2009-08-21T01:30:00.003-06:00

We've been in our new home 1 week. Mommy is still trying to get the pile of boxes down in the front room, so at least that looks presentable from the front door, starting by sorting boxes to bedrooms, kitchen, etc. The kitchen boxes are unpacked and for the most part put away. Since we don't have a kitchen table mom set my play house up on the kitchen. It's groove'n. Our home is definitely girly girl.

It feels more and more like home as mom hung the pictures of my siblings, their spouses and my nieces and nephew on the wall, and grandma. It's so hard sometimes realizing that grandma is gone. Mom does okay most of the time, but has sudden outbursts of tears, missing her so very much.

Mom still is in shock she actually made this move. She has never been one to like change or tackle the world or big decisions and moves on her own. This is so out of my mom's comfort zone. She can only explain it as a force that has been driving her for years to get here. She thought she knew the reason, but sometimes wonders if it's something totally different than what her heart was set on.

Mom's friend came on Sunday to hook up the dryer, and boy was she ever thankful. I was happy to see mom's friends and welcomed them with hugs. Mom was happy to see them too. She gets this lil sparkle or "twinkle" in her eye in their presence.

We are starting to settle in pretty much okay. Mom gets frustrated with me someday's because she says for every 1 thing she gets accomplished I undo 3. I struggle with temptation. Temptation to unplug the TV, push the TV onto the floor, toss my food, play in the toilet and help mom unpack, run with the toilet paper and shred it into pieces, empty the garbage, and steel her Diet Coke and watch it dump out onto the floor or chair. I watch her, waiting for her to turn her back, and then like a little swiper I swiftly attack whatever I can, knowing I'm going to get in trouble. Sometimes mom slaps my hands to let me know I shouldn't be sucking on electrical cords or knocking over the TV, and my lip quivers and curls down, til mom has to turn away, so I can't see her cry. I go right for the heart.

Now that we are settling in somewhat life here doesn't seem to be much different than it was in Cache Valley. We don't go far from home nor go out often. Mom works and stays up through the night sometimes in deep thought, contemplating life and our purpose here. I spend the day getting into things and singing with my TV shows. About 8:00 in the evening we go outside and I march up and down the sidewalk saying bye, bye, bye to my shadow as we take a small walk. I like sitting on the patio at the little table to eat my lunch or dinner sometimes and there is an afternoon breeze usually daily, so we get out the bubbles and the bubble wand and play some.

I meet my new preschool teacher here on Monday and start riding the lil yellow bus again on August 31st to school. Mom says it feels like sending me for the first time all over again. She'll be thankful for a few hours of time to herself, and yet she has a horrible time separating from me. I, on the other hand, love being with other children and feeling grown up and riding the bus.

My latest interest/word/sign is "fish". I try to hiss it under my breath and attempt the sign by wave my arm, versus just the hand, to sign fish, but I know what one is. We have one in a bowl on mom's desk, which I would love to spill out onto the floor.

We haven't really met any new people, and as usual we are behind our closed doors and keep to ourselves. Like I said, not too much different than our life before this move. Other than, we miss my sisters and nieces very very much. I miss Kinley lots.

Mom still feels pretty confident we are supposed to be here, but it boggles her mind and deep thoughts late at night wondering what our real purpose is here, and then she fills her mind with doubts. I think this is a big test of faith for mom. She really hates the unknown and not having life all planned out in a notebook or something. She says this "winging" it day to day, year after year, is for the birds!!! literally.

So, here we are for at least the next 12 months, testing out the area and trying to do good wherever we are, hoping to bring happiness and service to those who may need what little we have to offer. Like mom says we have so very little material wise, but we have hearts bigger than Texas.... Mine may look like Swiss cheese, but well.. mom says it's more "holy" than anyone's. ha..ha..ha.. get it.. holey and "holy". Spit and shine my halo.

Like Jeni told mom when we left home... no matter what happens.. the next 12 months will be an "adventure"... mom's a little worried about what kind of adventure this is going to be... she doesn't care for rapid waters or high winds of drama, nor being lonely. She prefers the still waters, peace, harmony and feeling love and having purpose, but then don't we all.

Let the fun begin...or the "adventure". come what may.

Our new home for a Season...

2009-08-14T23:18:00.003-06:00

Mom and I moved to our new home yesterday. Grandpa and Uncle Randy, bless their hearts for supporting mom, though they may doubt mommy's decision and what she truly believes in her heart and that is we are meant to be here for awhile, but she is unsure of the reason anymore. Thank you to our loving family for helping us out like they do. They are the best. They took the day off work to drive us down here and move us into our new place called home. Grandpa drove his truck and pulled a trailer, and Randy drove his service van full, and mom drove our van with stuff packed all around us. They even hooked up the washer, put the beds and mom's trashy desk together to make things easier on us.

Mom's really worried she worked Grandpa too hard this week and about his health, and contributing to his problems. She hates being inconveniencing anyone and stresses a lot when she does, or thinks she does.

I'm adjusting well to our new place. I even slept in my own bed in my own room last night, our first night here. My only words anymore are hi and bye bye bye.. I love to go bye. Mom and I took a walk on the sidewalk around the block and back home again. Last night mom had a hard time, sobbing, and doubting her decision, but she also hadn't had any sleep in 2 nights and has worked hard trying to pack and move things, work and keep me from unpacking as she packed, and well nights are usually harder on mom than the days.

We really miss Grandma. I look at her picture of me and grandma on mom's cell phone and wave at her. Mom misses her more than she thought she ever would. No one can love you like your mom.

We already miss Jeana, Jeni and their girls. Mom cries because she left them and our piano, but she felt in her heart she needed to make these sacrifices to go where God wants her to go. Mom questions God sometimes..well maybe not God so much as herself. She worries so much about doing what she should and the right thing, but she tends to just get hurt over and over for following those feelings of the heart.
Mom puts on a tough act, but she has a very sensitive heart, which tends to know a lot of hurt lately.

I know wherever we go and whatever we do that me and Mommy will always have each other. I'm her reason for getting out bed in the morning and her reason to smile and laugh, and believe that life is worth living. I'm truly a breath of heaven to her and my family.

May God bless my mommies aching heart and troubled mind. She really does deserve to be happy and to feel loved. It's so hard for her. She struggles with it all every day.. the doubts and fears. I'm trying to help her the best I can.

Me and Mommies Road trip.

2009-07-27T18:06:00.004-06:00

I went on a road trip with my Mommy this weekend. New places usually set me back a little and when the sun goes down I'm really anxious and antsy, wanting to get back to my own turf. Mom was a little worried I wouldn't do so well away from home, with my schedule interrupted. I surprised my mommy a bit this weekend, but feeling right at home in our environment, inquisitive and exploring things right away, innocently and not so innocently. I loved the dogs (the dogs dish), the water bed and one other thing a lot.. that mom is having a brain fart over at the moment.

I'm a good traveler. I didn't mind the long drive to our destination and I slept on our return trip.

One night we went to a BBQ with family of the people we went to visit. Immediately I went exploring for things to get into and I went for mom's drink and spilled it all over the patio by doing one of my famous table cloth tricks, which I attempted several that evening. I then proceeded to sit in the spilled drink and lie down and tried to suck it up off the ground. My mom spent much of the evening trying to keep up with me and saying "Sadie! noooooooooooooooo" She says that a lot. Other adults tried to keep their eye on me, a little worried, I think, what I was up to. Though I was blessed to be a ray of sunshine, I'm not sure I shone so bright that night or was very impressive to the company we kept. Mom says she isn't sure either, but that it's okay. It doesn't matter how others perceive me, only that I'm special to her and to God, and I'm learning mortal life at my own pace and with lots of vigor as of late.

One night we went fishing. They were worried I'd be a handful around the water and mom even considered not even going to this outing!! But, we went. The rocky terrain and slope to the water held me back and I did try to restrain myself when mom kept trying to explain to me what fish were and only fish swam in this water. I got curious about the fish and I've even made up my own word for fish.. it's kind of a hissing sound under my breath. I remember something about fish and fishing from preschool lessons a week or so ago. Mom took one picture the whole trip. (she was really scared to attempt taking many pictures, which is strange because she loves her silly camera and capturing special moments with it)..She tried to get some pictures of me at the fishing hole, but I was too busy trying to get to the water. She uploaded the only picture she took there and I immediately recognized it as the "fishing" place and when I see that picture I try to show my excitement for that day by flapping all four extremities and saying my "fish" word repeatedly.

We got home from or trip last night and I struggled with sleeping in my own bed by myself, which I normally would prefer. I finally went to bed good, but woke up crying (and I rarely cry) at 2:00 and ended up falling asleep in my mom's bed and stayed there the night cuddled up to her, which isn't my norm either. I usually want my space, but I learned cuddling over the weekend and I think I like it.

I was happy to see the little yellow bus this morning and enjoyed preschool, and was happy to go down for a nap in my crib. Life seems to be going back into a routine again, but I'm still very curious about what that trip was all about, but then again maybe I know more than mom and these folks think I do. I wish they'd take note sometimes at what I'm trying to get across.

I think my mom doubts things more than maybe she should. Life is meant to be lived and loved. I keep trying to get that across to people here. Life is short and not meant to be wasted on daily trivial matters that in the long run have nothing to do with our purpose for being here.

Happy Birthday Kinley

2009-07-14T09:32:00.002-06:00

Today I my Niece, Kinley's Birthday. I became a niece when I was 6 weeks old! I now have 5 nieces and 1 nephew, and 2 more on the way. Kinley and I have been like twins since birth. When my sister, Jeni, brought Kinley home from the hospital she weighed more than I did (as I was born premature at 4 lbs) and she layed Kinley down and mom layed me down fairly close to her and we both inched our ways so that we were touching each other.

Kinley is very protective of me. When we are in a play group or around other people we don't know she takes my hand and firmly tells everyone.. "My Sadie".

July 2009

2009-07-12T19:37:00.004-06:00

June 2009

2009-07-12T19:18:00.005-06:00

June was an eventful month for me. I started riding the bus to preschool. I love the bus. I was a little hesitant the first time on the bus, as you can see me in my seat for the first time. Mom turned her head and cried, and cried the whole time I was gone. School is fun. I get to be with other children every day and I'm learning so much.

June 12th was Braxton's Birthday and we celebrated with him on June 13th. Braxton got a T-shirt as a gift from his parents that says "Big Brother" on the front, announcing that he has a new sibling coming in December. I love being an aunt.

We spent as much as we could with Joni and Brooklyn because they will be leaving us soon to go live in Alabama, far away. I'm really going to miss Joni, a lot. Me and Joni have always been very close, and I love Brooklyn and playing with her too.

I don't like walking on grass, as my balance is still underdeveloped, so I stand on the water meter, as shown in my picture, as I wait for my bus to arrive. I go to school Monday through Thursday for a couple hours each day, which gives mom time to try and get some work done.

I love water and getting into the toilet and running with the roll of T-paper.

I've made some milestones or experienced some first this month. I experienced and took note of my first thunder and lightening storm and was in awe at the big storm we had with the rain, hail, and boom-boom and lightening in the sky.

I crawled into the play tunnel at McDonalds. This is the first time I've tried playing on playground equipment.

I've taken an interest in eating utensils and learning to eat with a fork and spoon. I'm working really hard at being a big girl.

May 2009

2009-07-12T18:49:00.004-06:00

I've had a busy month. I graduated from the up to 3 program and had my last day at Aggie preschool and my records have been turned over to the school district. I spent a lot of time in may having evaluations by various therapists to end with the Up to 2 program, and then even more for the school district.

My siblings, Jeremy, Jessica, and Jeana, and my brother-in-law Clark, all had Birthdays in May. My Birthday is the day before Jessica's on May 26th.

We spent a lot of time at my grandma's house, as she has been really sick with cancer, and was preparing to go to our Heavenly Home again. She passed away on May 14. The picture of me in the floral dress on the chair is at her viewing just before the funeral and the other one at my cemetery with my cousins boy, Willy. I'm going to miss my grandma. She adored me.

We had a little Birthday party at Willow Park Zoo in Logan for my Birthday with my nieces Kinley, Madilyn, and Brooklyn, and my cousin Tarahlyn and Aunt Sheri. The theme of the party was Curious George, because he's my best buddy. Tarah gave me a puzzle, which will help with my fine motor skills. Madilyn and Kinley gave me a drum which I love to pound on. We blew bubbles and chased them, had balloons and tossed balls around on the lawn. Jeana and Joni each gave me a new ball.

I'm starting to understand what communication is, but still only use a couple signs and one or two words. I enjoy being with other kids a lot and learn a lot from watching them, as I explore and discover how things work here on earth.

We also sent my brother-in-law off to basic training, as he had joined the Army.

I crawled into my toy bucket for the first time, thinking I was pretty awesome, but then panicked because I couldn't figure out how to get out. I'm starting to try new things, even though at times I end up in quite a bind.

I'm generally happy and love to tease and giggle, and belly laugh at my movies. I love playing with my mom's hair, and my grandma's puppy Toto.

I love to sing and watch the song leader and lead the signing in church. I bring much happiness to those around. I'm the light of my Mom's world.

Spring 2009 USU Human Resources

2009-04-29T15:57:00.002-06:00

March 2009

2009-04-29T15:54:00.002-06:00

February 2009

2009-04-29T15:51:00.001-06:00

January 2009

2009-04-29T15:42:00.004-06:00

Christmas Day

2009-01-03T18:13:00.002-07:00

Christmas Eve we went to Grandma's for awhile and then mom & I came home and basically had a normal evening for us. I really don't comprehend what presents are, Santa, etc., so this Christmas for me was about the lights and getting better from surgery. As you can see in the pictures I really was kind of backward to the whole idea. I didn't unwrap my presents. Mom helped me. The church was generous to us. The Relief Society ward members got me new blanket sleepers, socks, tights, boots and a warm hat to wear. The young women also took us on as a "project" and got me some new clothes, filled a stocking with stuff for me and for mom. We both got bath and body works good smelly stuff. Mom feels funny about accepting charity, but also realized how fun it must of been for the young women to pick out things for me and getting me a toy, etc. They also got mom a pink (pink tends to be our color) bathrobe, which shows in the picture of us Christmas morning.

We had Christmas dinner at Grandma's and grandpa's. I saw all my siblings and nieces and nephew, except Jeana's family.

The bestest gift of all, however, was my brand new niece, Jeana & Kurt's baby, Harlyn Marie, born at 3:15 Christmas morning. Mom called it. She told Jeana she'd be born Christmas day, and she was. Mom, also, was the only one who thought she was a girl before they found out. Of course, I knew all this, but I can't tell anyone. Ha..ha...

It was kind of a quiet uneventful day otherwise. When the sun started setting I got anxious and wanted to be home watching Monsters or the Grinch. Mommy struggled a few times and I saw a tear in her eye, something to do about not being a complete family. She is very thankful to have me in her life. She calls me her angel, her mini-savior, and the light of her life, but she doesn't feel complete I can tell. I hope someday she gets the secret desires of her heart and finds a good man who will love her and make her feel special, because she is ya know, but she doesn't feel it. I don't mind so much not having what others call a "daddy" probably cuz I don't have an understanding of what one is, but I do know I have an awesome grandpa, brother and brother-in-laws, and I do know that Heavenly Father & Jesus think I'm someone special indeed. I'm so loved.

Me & mom thinks, Jeana & Kurt got the best gift of all, their own little angel to love and cherish. The greatest gift of all, the gift of life.

My First Experience with Snow

2009-01-03T17:47:00.004-07:00

This is my favorite sitting position, usually with my blanky between my legs and my binky in my mouth as well. I'm just so stink'n cute. I'm truly loved <3

Mom was a little excited about me experiencing snow for the first time this year (not because she likes it all that much). It's been kind of my year for a lot of firsts. Last year I was still on continuous oxygen, not walking, etc.

Mom got me a taboggan she thought would be nice to take me down the hill in to grandpa's and back. Well, this cute little tabboggan was like a mini snowplow and we dragged 3 feet of snow all the way to grandma and grandpa's. Mom got her workout both downhill and up, and that has been my first and only experience in the snow this year. I won't walk in my boots, I hate mittens, hats and coats; all are just too restrictive (and mom can't argue that one because she won't wear them either).
So, the pictures are nice, and will be the last of them this winter!! However, I do find it fascinating to watch the snow flakes fall from the sky.

December ~ Surgery

2009-01-03T17:17:00.003-07:00

On December 19th Mom got me out of bed at 3:00 a.m. and drove us to Salt Lake to Primary Children's hospital, where I underwent 3 surgeries. Dr. Dries put a J tube in my left tear duct, but the right one was too occluded to pass the tube, so he repeated the balloon procedure he did last year on both eyes, that failed. He stitched the tube in place with absorbable sutures and will remove the tube in January, and hopefully this will keep the tear duct open. If the right eye balloon procedure fails again, then there is a more complicated surgery that can be done, bypassing the tear duct and draining into the nasal passage, but that would require another specialist for this procedure. Dr. Dries also did a complete eye exam while I was asleep and says I have excellent vision :)

Dr. Parks took out my tympanostomy tubes he put in last year. We thought I lost the one in my right ear because it couldn't be seen anymore, but he found it in my ear buried in scar tissue and buildup. He had to do some scraping of both ears to insert new tubes in both ears, but got it done. He also did a tonsillectomy and adenoidectomy on me. My tonsils and adenoids were quite enlarged and obstructing my airway, making it harder on my pulmonary hypertension/respiratory system and heart. With these out of my airway hopefully I will do better.

They told mom I'd be in the hospital 3-5 days, the first night being in PICCU. However, I did so well in PICCU (and they needed the beds) I was moved onto the floor the same day of my surgery. We drove to Salt Lake just ahead of a big snow storm, and came home in another one, the day after surgery. I'm so stubborn and did so well they released me early. I let mom know a few times that I blamed her for my pain and agony, turning my back on her and ignoring her, glancing at her occassionaly just to make sure she knew it too!! If looks could kill...lol

However, my nurses were awesome. They found my favorite Video, Monsters, Inc. and let me watch it all I wanted. Because I wouldn't lie down, and kept head banging, fighting the sleepiness of the pain meds, they got me 6 pillows and surrounded me by them so when I finally dropped I wouldn't get hurt. I soon became known as "the princess".

To convince them I wanted to go home and was ready after my early afternoon nap the day after surgery, I stood up in my crib for the first time since before surgery, yelled "luh-luh" at mom. She unhooked the monitors and I took off running the halls of the hospital with my leads hanging from my bare chest, kissing my shaddow on the hospital floor, waving and saying "luh-luh" to everyone. Suddenly very active and ready to cause trouble.

They soon released me to go home. In Salt Lake it looked like a perfect break in the storms and the sun was out, so mom thought we would get home in no time. Well our 1.5 hour drive turned into 4 hours. It started snowing before Clearfield, a 30 car pile-up accident happened on the Freeway near Willard and they closed the freeway and diverted both directions of traffic through the old highway. We rolled along under 5 mph for miles and miles, got to the mouth of the canyon and noticed it was snow packed as well, and we got home on my wings and mom's prayers, literally. My pain medicine was wearing off, but I still slept through my moans.

Grandpa was worried about us and had called the highway patrol, who told him they recommended chains on all cars through Sardine Canyon. Mom took it slow and steady. By now it was dark and mom's vision is horrible at night, that with the snow packed roads, stupid drivers, etc., her hands had to be nearly pried from the steering wheel when we pulled into Grandma and Grandpa's that night. Mom doesn't remember slipping or sliding much, but since then she has gotten stuck 2x in the driveway, spun her wheels on the icy roads and has had to make a run at them to get up our hill home. The tires are wearing on the Barney Mobile, and she knows we were being watched over on our trecherous drive home on the 20th. Our home teacher, Brother Woodward, with a partner came by on the 18th and gave me a blessing that all would go well, and it has. I have healed fast and well, and we got to and from Salt Lake safely in some awful road conditions.

All on my Wings and lots of peoples prayers.

Mom is very thankful for the protectors who were watching over us.

December

2008-12-12T22:06:00.004-07:00

In December it seems like a switch turned on new parts of my brain. My music box in my crib I've had since I was born would come on if I kicked it, but I really didn't know how it worked. I discovered the little blue birdie was the on off button and now I sit in my crib and turn it on, then off, on then off, just to see it work. I'm becoming a little more obsessive. At bedtime I have this routine; I sit in my crib put my blanky with my binky attached between my legs and cross my ankles, then I gather my pink snake-like pillow up in a U-shape around me and then my blankets. In the mornings I wake up slowly, lie in my crib awhile, chill'n, and when I'm ready for mom to get me up I stand up in my crib and yell "Luh-Luh". She comes to get me, I reached down and with care push the birdie button to turn off my music box and then reach to get out. Luh-luh is still pretty much my standard form of communication, just spoken with different pitches, etc. I can sign a few signs (well more than a few, but don't tell mom. I don't like to use them in front of her or anyone). Besides luh-luh... my other run of words still is Sadie-doit said very fast or Sadie-didit.

I've learned I can resist bedtime and pitch a fit. They say this is a good sign. Mom doesn't think it's all that amazing.

Around News Years I braved it and went down the stairs, alone, on my bottom without mom knowing. When she found me at the bottom of the stairs, knocking on the front door, yacking up a storm all excitedly and laughing, she was amazed. Now I go downstairs often, tipping over the trash can, getting into the laundry and opening cupboards and drawers and emptying everything. Mom's had to do some adjusting to keep me out of trouble as of late. ha..ha.. I just can't stand to see things on a table, cupboard, in a box or basket. I like everything spread out on the floor and all tables cleared of everything. If it's in my way.. it gets dumped out or swiped off the table.

I can now hold a cookie in my hand and take bits of it instead of taking one bit, drop or toss it, when I WANT TO. I still throw my cup, but mom is very persistent in trying to teach me how to just set it back down on the tray. My OT came this month early. He's ready to give up on me, said he thinks he is wasting his time with me. Ha..ha..ha.. that's what I want him to think, but I don't want others to see me progress until I have it perfected. He hinted at autism, but my other workers don't think see it and neither does my mom. He's just frustrated with me because I'm very very stubborn. I still can't use a fork or spoon, and still eat monkey style from the palm of my hand. I can use a crayon, but I still have the tossing reaction to anything in my hands. *shrug* I'm a work in progress! Slow, but I'll get there and in my own due time!

I had early interventions evaluations this month as well, and developmentally I'm between 15-18 months of age. I've watched my nieces all pass me up progressively, but they don't seem to mind. I learn much by watching them. I'm an observer. I watch, study people and then I try things on my own when no one is watching. I'm a bit of a perfectionist.

I am making progress. Mom has noticed that I'm finally taking an interest in how things work. She even caught me playing with a doll. OH! and I found a comb on the floor and have been trying to comb my own hair. Tiny steps..to other children all this little things seem to come so naturally, but I have to really work hard to figure things out. Every tiny accomplishment for others ..is a major accomplishment for me.

November & Thanksgiving 2008

2008-12-12T17:06:00.004-07:00

In November I got my haircut for the very first time by my sister, Jessica, who cut a total of 7 inches off my hair. Mom had a hard time not bawling. She's such a boob.

Mom & I drove to Eagle Mountain for Thanksgiving dinner at Jessica and Clark's home, and I got to see my brother and 4 of my sisters, my nephew and my nieces. I had a really fun day. I didn't even get anxious or nervous, until late in the afternoon after mom was playing the piano and singing Christmas songs with me, Kinley and Brooklyn, I backed into a corner and started pulling my hair. This signaled mom it was time to go and I slept all the way home.

I have the best family. I get to go to the gym every week and play with Kinley, Brooklyn and Madilyn, and jump on the trampolines and climb. Everything that I refuse to do with physical therapy. I'm very stubborn that way. It has to be my idea and in my own timing, and I refuse to do anything in front of anyone until I know I can do it to perfection.

I can climb up the stairs really well now, and I can slide down them on my bum, but holding onto mom's hand. I probably could do it alone, but I'm not so confident yet. I still sometimes forget how to climb off the bed and out of the rocking chair and couches I love to climb and still biff the floor occasionally.

I got another ear infection just before Thanksgiving, and the doctors think my right tube has come out, so I'm having surgery in December.

October 2008

2008-11-22T09:54:00.004-07:00

Down Syndrome Awareness Day September 13, 2008

2008-09-17T09:39:00.003-06:00

Today was a wonderful day! It was Grandpa's Birthday and so many of my family members came to the Down Syndrome Buddy Walk to show support for me and my friends. My Uncle Randy and Aunt Sandy came. My Sister Jeni, her husband Thomas, Kinley and Madilyn. My Sister Joni, her husband Steven and Brooklyn. Grandma and Grandpa Gardner. I was so happy Grandma could come. She has stage 4 liver cancer and she doesn't get out much, but Grandma and Grandpa would move mountains for me, I believe, if they could.

The theme for the day was Prince and Princesses. Grandpa came proudly as my Prince. He's not only my Grandpa, but pretty much my father figure. Kinley came as Belle and Madi wore Kin's matching cabbage patch dress. Brooklyn came as Snow White. I handed my Snow White dress down to Brooklyn. Joni's proud. Snow White is her favorite Princess. Me? I went as Cinderella :) and a gorgeous one at that. My mom beems with pride over me. She loves dressing me up and playing with me.

After our buddy walk around the block we had lunch, then we had games like the fish pond and the lucky ducky game, decorated castle sugar cookies and put stickers on our crowns to take home, and a cool pink temporary "Princess" tatoo.

Mom and Jeni don't know it, but me and Kinley are really true partners in crime. I love water so I side-tracked everyone's attention at the ducky came and started splashing the water and trying to get in the lil pool, cuz I love to swim and everyone knows it. While everyone was watching me, Kinley spotted the bag full of prizes, snatched it up and ran ...ran with it with every bit of energy she had. Ha..ha.. what a team we are, but they caught her.. but..ha.. we not only did it once, but ya... we repeated the crime...ha..ha..ha...... Mom and Jeni are gonna have to pick up the pace to keep up with us for the next 20 years. I use my innocence and Kinley she uses her energy to get the job done. After the games we had snow cones and the drawing for the raffles. We won some Disney books, a cheesecake pain, an oil change..and mom won a lip and eyebrow wax at a beauty salon (ouch why would someone want one of those)!

I was asleep in my car seat not even 2 blocks after we left the park. I was worn out, so I know grandma and grandpa, and mom were too, so I took a nice nap at home.

Then, we went to Grandma and Grandpa's for dinner for Grandpa's birthday. I got to see my newest neice, Maeleigh, too cuz my brother Jeremy and his wife Laura brought her to the party. I'm excited to have another "partner in crime". Mom's excited with another granddaughter cuz to her that means.. more "Barbie Parties". Bratz is a dirty word in our house.

My ear is starting to feel better. I was sick again last week and mom took me to the doctor, AGAIN, where they discovered a left ear infection and raging yeast infection, put me on another antibiotic and a cream for my sore hiney. I've been really sore and mom lets me run around without a diaper to air it out, but it's taking it's time getting better because although the antibiotic is good for my ear, it makes my yeast infection grow and even worse, but I'm tough. I take all this uncomfortableness in life pretty good. Mom thinks I'm a real trooper.

I'm here to teach my mom how to enjoy the simple things in life and bah the nagging stressors in life. They aren't what is most important. Life is about loving each other, helping each other, and enjoying the little pleasures life gives us.

Sick, again

2008-09-12T23:17:00.002-06:00

Mom took me to the doctor again on Tuesday, Sept. 9, because I have still been irritable and started developing a diaper rash. My left ear is infected and I have a yeast infection in my diaper area, probably due to the antibiotics I've been on. Of course, now I am on another course of antibiotics (10 days) for my ear, a cream for my rash, and I've gone from my bowel obstruction to diarrhea, which all contributes to my sore sore raw bottom, making me very miserable and mommie very sad and feeling at a loss at what to do for me next.

Tomorrow is the Down Syndrome Buddy Walk. My grandparents are going, even my grandma who is fighting stage 4 liver cancer is going to be there for me. My nieces, Kinley, Madilyn and Brooklyn are coming, my cousins Tarah and Alex, my aunt Sheri, uncle Randy and Aunt Sandy. I'm excited I get to wear my Cinderella costume and a crown, as the Theme is Prince and Princesses. If you don't know already, my name Sadie means Princess.

It's also my grandpa's Birthday tomorrow, so we get to party at his house tomorrow evening also. Mom sure hopes I'm feeling better and I can enjoy my day.

My new favorite movie is Peter Pan. We play it over and over and over..again.... I clap my hands and wave them in the air with excitement when it begins. When it ends I sign "more" to mom. Mom signs "more" and says Peter Pan back to me and I flap my arms and giggle.. and sign more again. Mom says.. whatever it takes to get me to sign!

Feeling Better Today

2008-09-04T14:02:00.003-06:00

Mom took me to the doctor yesterday, and of course while there my belly was soft. I didn't see my regular physician, but Mom does like the doctor we say also. He said he could still feel some stool in my bowels and to keep giving me MiraLax. He asked if I was always so quiet and still. Mom said no, that I just learned to walk and is usually all over the place, checking things out. He asked a lot of questions about my health and asked mom if she knew I had a very loud heart murmur. Mom said, yes that was normal for me. He told mom my symptoms could mean several different things, that with the many health issues I already have complicates things, from my thyroid acting up, stomach, heart, etc., etc.

So, he advised us to go home and if I wasn't feeling better in a few days to come back and they would run more tests.

That afternoon I drank some Pedisure and my stomach bloated up, swelled and got all tight again. I got clammy and sweaty a few times, similar to when I have had heart issues in the past. Mom's been so worried. Last night she just broke down after putting me to bed. She's been praying extra hard for me lately.

This morning, however, I woke up, ate some of my Barbie waffle, drank a cup of soy milk, later a cup of juice, but refused lunch. I've been more active, playing, walking around the apartment, laughing, waving at myself in the mirror and acting more myself. Mom thinks even my color looks better. We are hoping this is the end of my current round of whatever has been going on with my body. We are all worn out with worry and the stress of it all.

Still Not Feeling Well

2008-09-01T22:10:00.002-06:00

Sunday I still didn't want to eat. All I had yesterday was a couple bottles of Soy Milk and couple crackers. I had just a couple small bowel movements since the one in the ER. Today I was whiney and lied around a lot, wanting mommy to hold me, but she had to work at the computer. It was the last day of her pay period and she's been behind on work. I slept 11 hours last night. This morning I took a couple bites of my waffle and drank my milk, visited grandma and grandpa, ate a few fries and drank a cup of apple/cranberry juice, and then went to the gym with mom to clean. I slept off and on today. My grandma rocked me and I fell asleep just a couple hours after getting up. I don't want to walk, crawl, or play. I didn't even want to jump with kinley at the gym on the trampolines. I just don't want to do anything. Tonight I drank a little more juice, my tummy started huring and swelled again, and got tight. I had a couple really wicked diapers, and then I fell asleep. Mom's got a feeling something isn't right, so if I'm still not acting or feeling right tomorrow we'll go back to the doctor, maybe get another x-ray to see if I cleared my bowels. I'm just so tired... Mom's going to pray harder for me tonight than usual. She's really worried and cries easily when she looks in on me.

2008-08-31T12:17:00.001-06:00

My Day at the Zoo

2008-08-31T11:37:00.006-06:00

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I went to the zoo Saturday with my sisters,brother-in-law, and nieces, Kinley (who is more like my twin), Madilyn and Brooklyn. I'd been sick with a sinus infection, but woke up with my usual smile, so mom decided we'd try the trip to the zoo. I started hurting and crying on the way to Salt Lake. Mom was worried. I wanted to tell her where it hurt, but I didn't know how. I never cry, unless I'm in pain, so I guess that's how mom knew something was wrong.

The zoo was busy. Kinley sure loved the monkey's. She loves all animals. I don't like them much, but I did smile and wave a little at the 2 bears playing with each other. Mom decided to leave the zoo early. My sister, Joni, noticed my tummy was big and tight and told mom...then mom became really concerned, so we went to Primary Children's Emergency Room, where I got x-rays, an IV line with fluids, and when the x-rays came back showing a blockage in my colon they did an enema on me. Mom says I'm really brave. I didn't even cry when they stuck me with the needle for the IV. Kinley insisted on being by me and played nurse to me. I just wanted that IV out, and kept tugging at the tape and gauze. The nurse did a really good job at keeping it on me tho.

After the enema produced a good bowel movement, so they let us go home. Me and Kinley slept the whole way home. Boy was I happy to be home. I woke up for my night medications and watched an episode of Elmo's World, and slept the night through. I'm really tired.