Saturday, January 31, 2009

25 Facts of Life

25 things I would like for people to know about me…

This is the recent topic on Facebook. People are writing poignant comments, thoughts, and feelings about their life that people might not know or they want them to know. I’ve read them from 3 people this week and have had it in the back of my mind to write one, but didn’t want to overwhelm my “friends” with complaints…or as I know them the “facts of life.” So here are my 25 facts of life…as I know it.

1. I change my 32 pound, nearly 4 years old daughter’s poopy diaper 2-3 times a day. In addition to the other wet diapers too.
2. I mentally tally Sadie’s calorie intake everyday.
3. I cry when I watch Signing Time, EVERY time…I wish Sadie would sign or talk.
4. I sold my SUV to buy a minivan so the doors open at the push of a button to make life easier. Sadie has to be carried most of the time to the car or she will take off.
5. Sadie has had 2 feet surgeries, 1 eye surgery, 5 gastro procedures/tests, 1 24 hour pH probe, 2 EEGs, a ton of EKGs/Ultrasounds on her heart, casts on both legs for 5 months of her life, 1 MRI, 1 CT scan, 1 Audiotory Brainstem Response (ABR) with Sedation, forcibly given blood for Genetics testing 3 times...4th time will be on Monday b/c someone at the hospital screwed up her test on the 3rd time...hmmm am I missing anything?
6. I have a handicap decal for Sadie.
7. I’m thankful for Meghan each day…I admit I can’t take care of Sadie alone.
8. I cry that Shelbi seems to understand her sister and I’m thankful for her.
9. Sometimes I go 2 days without showering and a week without shaving my legs.
10. I question everyday why GOD would do this to a child.
11. I never wonder “Why Me?”…”Why Sadie?” simply…"why?”
12. I hate it when people say, “God never gives you more than you can handle!”…have those people ever dealt with a tragedy in their life.
13. I hate it when people use the word “retard” in a derogatory way…my daughter is intellectually disabled or formerly known as mentally retarded.
14. I have used the word “retard.” I was ignorant.
15. I’m obsessed about reading other peoples stories. I will even contact strangers and they welcome the kinship we share.
16. I invent new ways to keep Sadie in her clothes…cutting the onsies up and sewing it on her pajamas.
17. My 46 month old loves to strip in her crib and eat her diaper.
18. Shelbi is potty trained at 17 months, sleeping in a queen size bed, saying words.
19. Sadie is nonverbal…that means she does not talk. Even if you hold her arm and say your name 12 times...she will not repeat it back.
20. I hate to attend birthday parties…it reminds me how delayed Sadie is and it makes me overwhelmingly sad.
21. I hate it when people are positive…I’m realistic…please don’t be offended…I’m the one who lives this life…you come in sporadically and I appreciate your positivity…but it saddens me to know you don’t understand.
22. Sadie has 9 doctor’s who see her at least 2 times a year.
23. Sadie is on the Mental Retardation Waiver wait list.
24. Sadie is on medication for anorexics…which is working…she gained over a pound this month.
25. It is a huge undertaking to dress Sadie…she goes through about 3-5 outfits a day. I am always doing laundry…and I hate it, but I love the smell.

26. I love her with all my heart and will do whatever I have to do, even if i secretly complain about it to myself.

Sunday, January 18, 2009

I read this today on the CDO support group

> Mothers Lie> By Lori Borgman> > Expectant mothers waiting for a newborn's arrival say they don't care> what> sex the baby is. They just want to have ten fingers and ten toes.> > Mothers lie> > Every mother wants so much more.> > She wants a perfectly healthy baby with a round head, rosebud lips,> button> nose, beautiful eyes and satin skin.> > She wants a baby so gorgeous that people will pity the Gerber baby> for being> flat-out ugly.> > She wants a baby that will roll over, sit up and take those first> steps> right on schedule (according to the baby development chart on page 57,> column two).> > Every mother wants a baby that can see, hear, run, jump and fire> neurons by> the billions.> > She wants a kid that can smack the ball out of the park and do toe> points> that are the envy of the entire ballet class.> > Call it greed if you want, but a mother wants what a mother wants. > > Some mothers get babies with something more. > > Maybe you're one who got a baby with a condition you couldn't> pronounce, a> spine that didn't fuse, a missing chromosome or a palate that didn't> close. > > The doctor's words took your breath away. > > It was just like the time at recess in the fourth grade when you> didn't see> the kick ball coming, and it knocked the wind right out of you.> > Some of you left the hospital with a healthy bundle, then, months,> even> years later, took him in for a routine visit, or scheduled him for a> checkup, and crashed head first into a brick wall as you bore the> brunt of> devastating news.> > It didn't seem possible.> > > That didn't run in your family.> > Could this really be happening in your lifetime?> > There's no such thing as a perfect body.> > > Everybody will bear something at some time or another.> > Maybe the affliction will be apparent to curious eyes, or maybe it> will be> unseen, quietly treated with trips to the doctor, therapy or surgery.> > > Mothers of children with disabilities live the limitations with them.> > > Frankly, I don't know how you do it.> > Sometimes you mothers scare me.> > How you lift that kid in and out of the wheelchair twenty times a day.> > How you monitor tests, track medications, and serve as the gatekeeper> to a> hundred specialists yammering in your ear.> > I wonder how you endure the clich├ęs and the platitudes, the well-> intentioned> souls explaining how God is at work when you've occasionally> questioned if> God is on strike.> > I even wonder how you endure schmaltzy columns like this one-saluting> you,> painting you as hero and saint, when you know you're ordinary.> > You snap, you bark, you bite.> > You didn't volunteer for this, you didn't jump up and down in the> motherhood> line yelling,> "Choose me, God. Choose me! I've got what it takes."> > You're a woman who doesn't have time to step back and put things in> perspective, so let me do it for you.> > From where I sit, you're way ahead of> the pack.> > You've developed the strength of the draft horse while holding onto> the> delicacy of a daffodil.> > You have a heart that melts like chocolate in a glove box in July,> counter-balanced against the stubbornness of an Ozark mule.> > You are the mother, advocate and protector of a child with a> disability.> > You're a neighbor, a friend, a woman I pass at church and my sister-> in-law.> > You're a wonder.> > > Lori Borgman is a syndicated columnist and author of All Stressed Up> and No Place To Go

Saturday, January 17, 2009

Pity Party

I'll admit, I've been having a pity party lately, but I really feel myself coming out of it.

Things that are happening these days...In the line at McDonald's I turned around to smile and wave at Sadie. She held both arms up in the air and said, "Up." As clear as day...."Up." It was so awesome. I wished I could have gotten her out of her car seat.

Yesterday, Sadie's new bedding arrived, and today we got the new mattresses for the bunk bed. All we have to do now is build the doors so she'll be safe...that'll be no easy task. When will I find the time??? I can't wait to lay with her.

Shelbi is awesome and developing like crazy. She is mama's little helper and so understanding of what's going on with Sadie...already. She's been wearing panties for a few weeks now and had very few accidents. She's amazing.

Sadie started "private" preschool again. An awesome therapy group developed a preschool for children who need extra support. She is going Tuesday and Thursday. She will also start back in the public special ed classroom Monday, Wednesday, and Friday sometime in the next week.

Meghan has been awesome helping out with Sadie and truly has become a part of the family. We are grateful for the help. For the first time ever, I feel safe leaving Sadie, other than with Bill of course.

I'm really looking forward to the next couple of months and I know Sadie will enjoy school. I will also get some one on one time with Shelbi.

I love you Bill!

Thursday, January 15, 2009

Life

I've been meaning to post this...I wrote it in pencil on Dec. 18.

We go in the bathroom for bath time, which we have done every night for 3 years 8 months and 11 days. I start the water just as I always do...Sadie tries to get in fully clothed.

After bath, both girls are dry and we walk the five steps to the "dressing/playroom" which is purposefully used just for that. I spend a few seconds grabbing a diaper, pants, and shirt for Sadie. All the while, Shelbi is putting a wooden puzzle piece in the puzzle. She's been doing puzzles with ease for 4 months.

I pick Sadie up to a stand. Her body is like a rag doll. She doesn't help. I tell her to put her foot in the diaper, then the other foot. I tell her the same way I have told her for 2 1/2 years. Next comes the shirt...put your arm in, put your other arm in...the pants are next. I dress her as if she is a 30 pound baby doll. She shows no attempt at lifting her leg or arms to help this time. I know it's a rare chance that she will even attempt to lift her leg or arm...I'm dressing her the same way I did 1 year ago, 3 years ago, and quite near the same as I dressed her the day she was born. At least this time she didn't fight getting dressed.

I walk out of the gated room to start a load of laundry, which is 5 steps away. This load of laundry, like all the other loads of laundry, is full of Sadie's soiled shirts from the constant drooling and messy eating, and the occasional spitting up. Full of dish towels to clean the food off the table and floor after each of our 3 meals today.

It took about 3 minutes to dress her after her bath and about 2 minutes to load the laundry. I come around the corner to find her naked again, in all her glory...the same in which she was born. The effort, the sore back from bending and dressing her...all gone with no understanding that she has to wear clothes. She is naked.

I decided to write because I feel know one understands Sadie or what it takes to care for her. I get a pencil and notebook that have been sitting on her dresser. The notebook is sitting there because I have weighed and documented her weight since she was a few weeks old. She was and sometimes still is considered "failure to thrive."

As I write my first words, Sadie sits naked at my feet pulling her diaper apart and stuffing the pieces in her mouth. I quickly stop writing and ask her to spit the diaper stuffing out. She pulls the wet piece from her mouth, I quickly grab it. If I'm not fast enough, she will put it back in her mouth. She stands and reaches up for me to hold her like a one year old child does. She will be 4 in April.

I take her under the arms and lift her thinking how much harder and heaver she's getting. I write now and the pencil is in my right hand, her naked butt is on my hip. I have to hold her left hand with my left hand because she keeps grabbing for my notebook and pencil. She doesn't understand that I want her to stop grabbing for it.

Shelbi continues to play 3 feet from me. She is stacking Legos and putting them in the box. She is 17 months old. And she put her underwear on, she is potty trained.

Tuesday, January 13, 2009

GOD

I was wondering about God today. Which was prompted by a friend thanking God for her answered prayer.

People pray and pray. Then their prayer is answered.

Why does God answer some prayers and not others?

Feeling sad today.

Monday, January 5, 2009

Sleeeeeping in the car today


January 5, 2009


Sadie had her 6 month appointment with the "rehabilitation physician." Another waste of time and insurance money. Some times I wonder how much they bleed the insurance companies...Sadie is a cash cow.


Sadie sees 9 doctors every 6 months...that's 18 specialist appointments a year...that's 540 dollars a year in copays...sometimes the doctor's cost $200-$1200 a visit...Add that up! Her AFO braces were $950...that's $475 a foot...who prices these things??? Okay enough of the soap box.


UBE3A test (Angelman's Syndrome sequencing test)

December 29, 2009

Sadie had to give blood again for the gene sequencing UBE3A test. This is the sequencing test to see if she has Angelman Syndrome (the other test was negative). My gut tells me that the test will be negative, but Bill thinks it will be positive.

My mom went with us to the lab. Of course, Sadie fought the entire time. The first nurse "blew" the vein in her left arm. Another nurse took over and was able to get 3 tubes of blood from the right arm. Sadie straddled my lap while Poppy and the nurse held her arm still. She screamed and cried the entire time...I cried.

Another exciting day in our family...I hate all of these appointments.

Two days later, I open a letter from our insurance company stating the test will be covered (already preauthorized by the doctor) for 1/1/2009 to 2/1/2009. My stomach lurched...the test is 1800 dollars and we have a 20% coinsurance payment. Today, I spoke with the genetic counselor and she assured me that it's okay and it will still be approved. We already met the $2000 yearly (2008) out of pocket for Sadie, so we wanted to get the test in before the end of the year.

This week we are trying to figure out Sadie's school situation, now that we had to pull her from private inclusion...the teachers didn't know what to do with her...she wanders the classroom while the other children are function and age appropriate.

She's also been sick with a sinus infection...me too. We are both on antibotics.