Sunshine Sadie Mae

Tuesday, December 14, 2010

Merry Christmas from Sadie Mae

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.. 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

 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   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   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

 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. 

Wednesday, November 10, 2010

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

 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   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

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.

Friday, November 5, 2010

Halloween 2010

 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 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

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).

Wednesday, August 25, 2010

Sadie's IEPs

 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.

Sunday, August 22, 2010

More postsurgery fun..

Amy and Sadie.  Before the sleep study we met up with one of my high school friends from Albany, Oregon, who has been living in St. George since she got married in 1979!  Sadie and Amy bonded right away and we had a fantastic visit.  It was soo good to see Pam after all these years.  It's like our friendship just took off where it was years ago.  I believe we shall be making it a point to visit more often.   Pam was actually able to meet us at the Temple my first time back in 7 years on August 10th.  It was an amazing experience.

 Sadie and I on our front steps one evening after we were home from surgery.

 Sadie with ice cream everywhere on our swing I had bought when we were in Logan before Sadie's surgery. We had a couple friends who came over and put it together for us.. and Sadie loves it. She swings and says.. "wee... weeee"... We love it.

 My first night back at the Temple I was frantically looking for sitters for Sadie, as I hadn't ever really left Sadie while living here.  My friend Sandi's daughters, Stacia and Katie (who both sat at the hospital with their mom, me, my dad and Cassie the 5+ hours in the waiting room during Sadie's surgery) volunteered to drive up from Salt Lake and spend the night with us and watch her.  Sadie loved her slumber party with the big girls. And I know these two lovely girls earned some angelic points in heaven!  Bless their sweet, sweet hearts to provide such a service for me and Sadie Mae.   I'm so blessed.

Sadie's first night wearing the CPAP mask.   Broke my heart putting it on her and hooking her up and watching her throughout the night. She did great.  I was a wreck!

Holy smokes, where did the last month go?  I'll tell you where!!  Sadie had her sleep study in St. George the last week in July, which was a total nightmare.  I expected it to be sleepless, but it was traumatic. They had 21 wired leads on her hooked to a machine, several of which were on her headed, put in place with plaster.  It took 3 hours to get them all on her. They were coming off as fast as they put them on after her tolerance level died 2 hours into the process.  A few never did get hooked up. She had about 12 inches of wire from her to the machine, and her oxygen tubing kept coming loose through out the night as it never got taped down... so the whole night was wrestling match trying to keep things attached and her moving around too much to disconnect it all.

We then had her followup on August 4th with the cardiothoracic docs.  Her heart is doing so well they didn't even hear her murmur at ALL.  Before surgery you could hear it with your ear near her chest!.  They said the right side of her heart is working awesome and they didn't put her back on any hypertension meds. The only medicine she is on now is her thyroid medicine.  A total miracle!!  All those hundreds and thousands of prayers in her behalf were answered.  I was so thrilled.   Suddenly, I felt a change in the wind, that we were being truly blessed and good things were coming our way.

On August 12th I took her back to St. George for the results of the sleep study, which wasn't so wonderful news.  Sadie has severe obstructive sleep apnea, with her breathing stopping about 116 times an hour, soo since I didn't want to even discuss surgery at this point, the doctor told us the preferred option would be CPAP and if she wouldn't tolerate that then it would be the oxygen still at nighttime.  I just wanted to cry.  So, we had to try on masks and fit her for one.. In the meantime her stomach has been sour, so she kinda cut loose on their bed.. it was soo embarrassing. I had to run out to the van for a 3rd diaper and wipes.   5 weeks after surgery and still can't get her bowels regulated!! 

Surprisingly, Sadie has done very well with the CPAP and wearing the mask at night.  We've had one bad night.  Her skin doesn't care for the mask and her face is breaking out with eczema.

The last two weeks have been....crazy.. amazing.. mind rushing... heavenly.. and yet ahhhhhhhh... I'm truly, truly blessed.

Sadie has bounced back to her normal very active, strong-willed Sadie.... and we are both looking forward to her going back to preschool on the 30th.  I have to take her to the school Tuesday for her IEPs with the teacher and therapists.  :D

Also next week she is cleared pretty much to play on playground equipment again, so we will be making our evening walks to the school again to play on the slides and such.

I love summer... and it's hard to see it end.   But, what a rush it has been. Buying my home in the spring, trying to get settled and surgeries set up and done, and rush, rush,, rush.... so sad it's gone without more fun...but good to be done with surgery for awhile now.

Saturday, July 24, 2010

First week home, July 24, 2010, Saturday

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.