Sunshine Sadie Mae

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).