Wednesday, December 26, 2007

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.

9 comments:

Nancy said...

Oh, Tara, this post made my heart ache. Buying toys is pointless 99%of the time for us. Erik got some really nice things this year -- a moon that lights up on his wall and some books. He loves those. He did unwrap them, and that was wonderful. He got 2 tricycles and cried when we tried to put him on them. He rolled them around instead or spun the wheels and seemed happy with that. It's just not the same. It never will be. We just have to find joy in what they find joy in. Because I will never have another child, this is REALLY hard for me. It's easy to feel sorry for myself and plain cheated. I try not to but it hurts.

Christmas was wonderful here, in any case, and I hope you had as much fun as we did.

Love,
Nancy

P.S. It's nice when your spouse "gets" what you are feeling emotionally! You have a wonderful husband.

Every minute counts.... said...

I am glad that in the end you figured out what we did one year ago. It doesn't matter what you get them they just want you, and in turn you just want them. It really does make everything easier when you just realize that she knows what Christmas is really about( family and love) it's not about the things.
Abi still does not care to play with many toys. The only toy she has touched is a Barbie throne that plays music when she sits on it. We ended up getting her movies and clothes and that's about it. ( her new love is old musicals...Annie, Sound of Music...) She did enjoy unwrapping way too much though...which ment mom re-wrapped a ton before Christmas because Abi had already unwrapped it all..:)
Hugs to all of you!!

Noel and the rest of the Clayton clan

Penny said...

Tara,

I had the very same experience this year with Keith. I guess we need to learn to better manage our expectations. It was so heartbreaking.

Heather said...

Tara, I so know what you mean. Finally this Christmas, Caleb was excited about toys. I told Chuck that it seemed like this was Caleb's first Christmas! I will tell you what I have found throughout the years. Caleb has limited interests, trains, dinosaurs, indians, monster trucks, tractors. Not all at the same time though. I found that when he was about 5, he was into tractors, big time. We got him lots of tractor toys and one picture book. Not a book with drawings, it had actual pictures. We were so excited about the toys. His favorite was the book. To this day, his favorite gifts are books with lots of pictures. Fire trucks, and Indians this year.
I told Nancy this too. If you go to this web site www.dk.com, or just go to Borders,You can find picture books of whatever she is interested in. Caleb can sit for hours looking at his books.
Apparently this is pretty common among kids/teens with WS. Hey, it keeps him busy, and out of trouble!
Caleb hasn't had a real sense 'imagination' and I feel that is part of the reason he hasn't liked pretend play with toys. It is actually just starting to emerge, and he is finally playing with toys. Finally!

Lisa R said...

Tatum got alot less then Emma and a few of the gifts she has really enjoyed others I think she'll never touch... She was not so into paper like I thought she would be

Teresa & Shawn said...

Tara - Love your Christmas card! Your children are so beautiful!

The only toys that Clare really loves is her baby dolls. She is a regular little mommy to them. So Santa brought a stroller, high chair, and crib for them! She had more fun making Christmas cookies, watching the lights on the tree, and, of course, unwrapping her presents! But I don't care. I just love watching her find joy in the things that she loves. I have to set my expectations aside for what she SHOULD like and let her experience what she ACTUALLY likes.

Kim, Grandma to Ava,ws said...

Ava is like Payton in many ways. She, too, can live without toys. I only bought her a few things for Christmas. She loved the musical stage because of the mirror. She also likes board books because she likes to turn the pages. Her favorite gift? Us. Hugs. Kisses. I'm beginning to think she has the right idea!

Happy New Year!

camille said...

Hi there Tara,
I know what you mean. Last year, I thought well maybe this Christmas he'll be interested in opening his presents but he really didn't care. It was pretty disappointing. It's also hard to swallow when you see another kid his age so effortlessly doing what you've been trying to teach your kid to do. I don't know if that will ever get easier to live with...maybe we all just need to change our expectations and follow their lead.

Kerry said...

It's so hard when our expectations are not met for something so simple like Christmas gifts. Just rememeber this though: Things will already be better for you guys because you already understand what is good for her and what isn't. Next year will be different (plus she'll be older). Brady's favorite gift (I think) was a fleece blanket because he kept grabbing it and playing peek-a-boo with it.