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.