Tuesday, April 29, 2008

Heartache

I remember sitting in the geneticist's office, the doctor telling me she is pretty confident Payton has williams syndrome but will need to do the FISH test to confirm the diagnosis. She was very positive and said "If your child has any syndrome, this is the syndrome you would want them to have." And, as I left, she looked at me, tears streaming down my face, and said "Love her like you always have, she's still the same Payton." Yes, she's still the same Payton but all of a sudden my world flipped upside down and the dreams I had (yes, my dreams...not necessarily her dreams) were gone. I've come to the point that I wish the geneticist would have looked me straight in the face and said "Your heart is going to break over and over and over and over and over again". Prepare me, somewhat, for what lies ahead. Heartache.

I still hear the comments "Oh, Payton will be the first doctor who has williams syndrome - you just watch!" "She's so smart, she must have a mild case". As much as I would LOVE to believe these statements, as Payton grows I feel like her delays are becoming more apparent - and maybe even more widespread. She is doing so well speaking - but her communication/receptive language is still quite delayed. I still don't understand why when she's hungry she won't just ask for something to eat. She goes into meltdown mode - I wish she would just communicate to me that she's hungry. This week just seems to be full of a lot of heartache.

Sunday we attempted church again. Sunday school always goes very well - and I am thankful for that. This Sunday I got out of my class earlier than Payton's (very unusual), so I was able to watch her thru the window. A teenager was helping Payton with the activity they were doing...I guess I should say 'trying to help Payton'. Payton was standing up so I would've guessed she would've been very active at this point....instead she was spaced off, mouth open - in her own world. She does that when she is either overstimulated or overwhelmed. Seeing her face like that kills me. Heartache.

Then, on to the worship service. I keep trying to take her - thinking eventually she will have a good experience. And, I do try to pay close attention to see when she's about to lose it or see when she's had enough. Payton was nervous as soon as we sat down, so I tried to sidetrack her with goldfish crackers. It worked for a second, but then the choir started to sing......there's got to be something about the organ and the piano. She screamed at the top of her lungs and covered her ears. We bolted out as fast as we could. It's obvious it hurts and I hate it for her. Heartache.

On to this morning. Preschool signup. I was told I needed to get there early....there's always a huge waiting list. Sign-up started at 8:30, so I got there about 7:30. I sat in the car for a while watching the children enter school - parents drove up to the door and out jumped the child. I found myself trying to picture Payton going into the school by herself (ofcourse, I pictured her just wandering off, doing her own thing)....and what about getting her tray for lunch? I can't imagine her being able to carry her tray by herself.....and on the playground, that's an even scarier thought. Oh - and the school bell (now instead of a bell it almost sounds like my alarm clock)...I hope they give her some type of warning before it goes off every day. I got out of my car and went in the school - got my number (good, I'm 5th in line! That means she'll have her spot!). Finally 8:30 arrived and I gave them all of our information. Payton will be in the three year old class (three year olds go in the morning, four year olds go in the afternoon). I got the name of her aide - and along with that came wonderful praise for the aide (whew!). I got back in my car, sat down, still suprised at the emotion I feel for putting my almost five year old in a three year old class. Heartache.

14 comments:

sara said...

Tara, I have always tried to comprehend the emotions you must have during times like these. I know how difficult it is for me as her aunt to watch her struggle in church (you are right, it's so obvious the sound is painful for her), and to think of her being in a younger age group in preschool, etc, that I cannot fathom how much more that must hurt you as her mother. One thing I am sure of, though, is that every one of her classmates and teachers are going to love her to pieces! She will know every one of their names by the end of the first day and she will definitely make everyone smile. I am so proud of that little girl . . and her parents!!!

Julie said...

I totally get what you mean when people say things like, "she has a mild case". We are still at that stage. I used to think, maybe, but now I know better. Noah doesn't really have the anxieties, at least not yet. I can only imagine how your heart breaks because mine breaks to read about it happening to you guys. I am just now starting to see how "different" Noah is and I know it is only going to get worse. If it makes you feel any better he hasn't sat through a church service in months only his is because he acts like a wild man. We don't even try any more we just take him straight to the nursery. I did have a question for you. Have loud noises always bothered Payton? I ask this because they did really bother him when he was a baby and since he was about a year old they haven't. Now all of a sudden they do again, ex. fire siren, vacuum, hairdryer. He doesn't cry just gets really panic looking and rapid breathing. Just curious. You guys are in my thoughts and prayers.

Every minute counts.... said...

I hate to say it but the gap does seem to get bigger with age. The only good thing is they learn that they can sweet talk their way out of just about anything:)
I too hurt to think that my 5 yr old is in with 3 yr olds that are more advanced. It is heartbreak and that is all you can call it. Heartbreak, time and time again.
Not so much for her but for you. Your mom your supposed to be able to fit everything and when you can't it pulls your heart into little pieces.
Love you and sending prayers your way,
Noel

You should recieve a package sometime next week in the mail :)

Heather said...

Before we knew about WS a little over a yr ago, we still had some high hope for Caleb. We thought he would just wake up normal one day. Snap out of it! I know how you feel. It hurts. We are here for eachother. It means a lot! xoxo

Anonymous said...

Hi there. i have a very good friend who has williams syndrome and i would love to do something to raise money for research and to involve kids with the syndrome. i was thinking about some kind of sports camp or something related to sports. I currently work as an athletic trainer, so I have some exerience around sports and medicine. I'm just trying to get some feed back on whether this would be a successful idea or not. any input you or your friends could give would be greatly appreciated. thanks so much. you may reach me on email at pamatc1@aol.com. thanks and god bless.

Pam

Tes said...

Our hearts ache with you, we all have these moments, we wish them away, we pray for peace, but most of all we are all here for you, you have done a great thing by expressing yourself. She has a great advocate in you and your family.
Big Hug

Penny said...

Tara,

Please know that I know exactly how you feel. Keith and Payton are so close on age and go through many of the same things. I know your pain. I feel it many days, Some times for days and weeks at a time. Unfortunately, it seems as the gap does not close. One thing

I learned just this week is that I stopped trying to do things that I wanted him to do, such as going to the zoo, or bowling, etc. when I knew he just could not handle it. He loved to go outside and walk, so we took a drive and went window shopping and had lunch outside and he had a great day and no meltdowns and we were both happy. If Payton can't tolerate church, then maybe take a step back and think about what she can tolerate right now. You will both be able to breathe a little easier.

Don't worry about her age and the other kids age. Keep in mind her developmental age and the other children's developmental age. Just try to enjoy her and all the of wonderful things she will teach YOU. Try not to be heartbroken...I know it's hard, but she is such a gift. It's all a gift sweetie.......remember that. It's all for a reason. She is teaching you a love that you would have never known. I am here anytime to talk.

Keep the Faith

Amy said...

Ugh, the "mild case" conversation! I hate that one, I just smile as the other person goes on...walk away, and roll my eyes. They don't get it. Reality is hard when it slaps you in the face because most of the time you are getting borderline patronizing compliments from therapists and teachers about how great your kid is doing and how sweet and wonderful they are. Doing good in comparison to what? What planet are you on people? Cuz it ain't the one I am, the one where my daughter cannot even put 2 words together and she is 3!! Ok enough for the rant, sorry!!! Glad you got a spot in preschool and the aide is good.
xoxo
Amy

Michelle said...

Even though our kids have different syndromes I think a lot of it is the same...some of the same challenges and feelings. I remember comments about "mild case" too and I try to explain it's not mild it just is. She has Ds in every cell of her body.

I worried when Kayla started preschool too, but it's been wonderful for her. I also had the same worry about the lunch tray LOL I remember thinking, Kayla's not going to be careful carrying her tray around and she'll probably drop it all the time, but I had no reason to worry. I think kids do better sometimes when we're not around and when other kids are doing the same thing. I had lunch with her class once and was amazed as she stood in line w/her class, waited her turn to get her tray, brought it to the table etc...(she won't even stand still to wait in line w/me at the store!)

do they play the organ and piano throughout the whole service? If not and they only play it at the beginning maybe you could wait until that is over to go to the service?

Nancy said...

I can see where people are going with the whole "it's the syndrome to have" thing, but I still think it's a stupid thing to say. Just my two cents. I get a lot of the "mild" thing, too, which I also can understand but feel it paints over the struggles we have on a daily basis and is a sign of denial, at least from the family members I have heard it from. They are hoping for the best, I guess. So am I, but I am in the trenches here!

Your children are completely adorable. I hope I can meet your family someday.

Kerry said...

I hear that about Brady, but people comment because he is such a baby still... his differences (besides being delayed) are not that obvious because he is still so little. I wonder how that will change as he gets older.

Penny had some smart words above.

Michelle said...

I can feel your heartache....my heart aches the same way.
Ari makes that mouth open, protruding tounge, spaced out look...I always catch her in the car and tell her "close your mouth". I hate it. Don't you love the mild case conversation. Let me tell you it's better than the alternative. When Ari was diagnosed my husbands family sent us mass cards, and acted as if she had died...I don't know what's worse - people giving up hope or people holding onto hope. Eitherway it is as you said...Heartache.

Katie said...

Well i cant really add anything to the comments above, wise words from everyone...
I was very pleasently surprised with how easily Jai has settled into pre-school, he is adjusting to the routine well and gets very upset on the days he cant go, he loves it!

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