Expectations

Bob and I were so excited this year to watch Payton open her gifts. In our minds, we were envisioning Payton ecstatic about the gifts we had so carefully chosen for her this Christmas. Her birthday was just a month before Christmas and we had decided on a train set with a train table. After all - she seems to love trains and we just knew this would be a toy she would play with. Suprising to us it did not turn out the way we had hoped and we've watched Koen explore the train set more than she has. It's difficult to watch children her age or younger come over and play with her toys and understand how to use them. I remember Dr. Mervis's words clearly "Payton's toys will be you and her father". I didn't really understand what she meant at the time. After all, Payton was just about to turn two years old and still wasn't walking....playing with toys wasn't anything I'd really even thought about. I was still trying to fully come to terms with her diagnosis and what it entailed. Now that Payton is four I understand what Dr. Mervis was trying to explain to me....most children with ws do not play with toys. They watch their parents play with their toys.

We decided to have our Christmas on Christmas Eve because Christmas day was full of activities starting early in the morning and we wanted Payton to be able to sleep in as long as possible so she could enjoy the day. Payton was thrilled to see all the presents and Bob and I couldn't wait to see her face as she opened them. As expected of any child her age, she flew thru the unwrapping - leaving boxes left to open to see the clothes inside and moving the toys out of her way to get to the next gift to unwrap (she ofcourse got to open her gifts and Koen's since Koen is too young to unwrap his own). After she would open each gift we would ask her "what is that?" or "what is this?" and each time her response was "that". My heart aches each time I hear her answer "that", but I know in due time she will be able to respond to "what" questions. Thankfully, it is a goal set up in her IEP. I looked around the room at her new clothes, a desk (she has become increasingly interested in using pencils and drawing), and her fisher price sing-along toy sitting untouched as she sat on the couch waiting to watch a home video of herself. I was sad and disappointed because I was thinking we had reached the age where she would be excited about her new toys and just wouldn't be able to wait to play with them (as I did when I was a child). I explained to Bob that I was a little disappointed because I'd been seeing something so different in my mind about how she would react to her toys and how I could imagine her sitting and playing with all of them - using her imagination and understanding how to pretend play. He seemed unscathed by it all and went about trying to put batteries in toys and getting all the wrapping paper picked up.

It was getting late so I went to give Koen a bath. Koen loves his bath and seeing the smile on his face and the joy he gets from splashing around in the water instantly relaxes me. As I put my hands down in the water to start washing him I noticed the bruises on my arms left behind from Payton's biting episodes from the chaotic week of Christmas get-togethers with friends and family. My mind was reeling from the hectic week and the way Payton can't seem to adapt to the schedule changes the holidays bring. Soon Bob was standing in the doorway and said "You're right". I couldn't understand what he was meaning and asked what he was talking about. He said "I got the walkie talkies out and she couldn't understand at all how to use them." (Payton loves yelling into Koen's baby monitor and hearing herself in the other room, so we thought she would enjoy walkie talkies). He continued on saying "No one will ever understand what this feels like unless they've gone through it themselves. I told myself I'm not buying her another toy just to have it laying around like every other toy we've bought her". And, he's right. Her joy is not in new toys. It is about being surrounded by her family and unwrapping and tearing every piece of paper in sight.

She seems to have so much joy being around other people she can't contain it. It's almost like the joy shoots out of her fingers and toes. I can't think of a greater gift than seeing so much joy in my child's eyes.