Saturday, December 13, 2008


It's been a while since I've written what I think of as my "Williams syndrome" posts, but tonight Shawn and I had one of those WS moments.

One of my friend's daughters had her four-year old birthday party tonight at a bounce facility - the kind of place with huge slides, bounce houses, obstacle courses, anything that can be filled with air! Our children were very excited. Jamie and Clare talked about the upcoming party all day, and even Simon wandered around the house saying, "Happy Birthday" (or his version of it!). Once we arrived, Jamie dove right in, and we barely saw him the rest of the evening. Simon needed more supervision, but even he was having fun exploring the bounce houses and discovered he loved walking on the cushions of air and collapsing everywhere. Clare, however, was a different story. She cautiously went into one of the houses (with our help), but almost immediately was overwhelmed by the kids, the bouncing, and the fact that she could not keep her balance (very hard for her to do on unstable ground with her low muscle tone). She wanted out. There was no crying or tantrums, but she ended up just walking around the room watching everyone else. At the other children playing and running and bouncing, red faces and flying limbs from having the time of their lives. Shawn commented to me in passing how hard this was to watch Clare in these situations. I wanted to sit in the middle of the floor and cry, but since I really didn't want to do that in the midst of relative strangers, I kept reminding him (and myself) that Clare was having fun in her own way.

The evening did go better. Eventually Clare became more confident and would enter a bounce house if the kids weren't too crazy or there were only a couple of other children in there. She did fall on her back and laugh and try to stand up, grinning from ear to ear. We brought her favorite cream cheese "sandwich" and milk (while the other kids had pizza and juice boxes), and she loved sitting on the picnic table benches with the other kids (she is starting to insist more frequently on sitting in a regular chair instead of her booster seat). She tried her cake (and left quite a nice portion for Mommy to finish!) and had fun watching the birthday girl open her presents. Every time a new wrapped present appeared, Clare would ask me, "What is it?" and eagerly wait to see what was unopened. I don't know if Clare realizes yet how she is different from other children. But I do, and it hurts.

The most interesting moment of the entire evening was when a little boy from the birthday girl's class arrived. My friend's daughter is one of the "typical" children in a side-by-side classroom with children with special needs. I am pretty sure this boy had Down syndrome. Clare instantly gravitated to him. She kept telling him, "come on," gesturing to the bounce house that she finally found herself comfortable in. The boy and his mom went into the bounce house with Clare, and she had a great time playing with them. This other mom was terrific, including Clare in their play. I wish I could have gone in there with them, but the big baby belly made that almost impossible (I can barely walk on solid ground these days!). And Shawn had his hands full following whirlwind Simon around. I was so glad to see Clare having fun, but at the same time, it still gives me such an ache to see that no one else wanted or attempted to play with Clare, except this other little boy that Clare approached. It made me wonder if that other mom felt the same way I did. But, like me, she had a huge smile on her face and was concentrating on making sure her little boy had a grand time.

I try to be brave and stay positive. Shawn brought it up again in the car on the way home, and I just kept saying that the main thing was that Clare had fun. Maybe she didn't have fun in the same way as the other kids did, but she did have fun. I know life is going to be like that over and over for Clare. She will not always be able to experience things the same way as other children. But I hope that the way she does experience her life is every bit as rewarding and wonderful. I hope she doesn't have the moments that I have sitting alone and crying because of the way she is different. We all love Clare so much, but it is not always easy to be her mommy.


nichole said...

The important thing, as you pointed out, is that although her experience was different, she still had fun. I don't know that the other children intentionally left Clare behind, at 4 years old, in a setting like that, you just want to have your own fun. It sounds like Jamie, Clare, and Simon did just that.

You and Shawn are doing such a remarkable job parenting all of your children. I am quite envious and know that someday when I have my own wee one (way way way down the road), I have great role models.

Nancy said...

It's hard, I know. I honestly don't think Erik knows what he's missing...yet, at least. He has a great time watching children play from the security of my lap a lot. He is just starting to branch out now that his hearing problem is not so debilitating...but it is still REALLY hard to watch for me. I think it's harder on me than it is on him.

Hope you are feeling well and staying warm. Thinking about you over there!

Aunt Joan said...

Teresa & Shawn ~ I am sure you'll hear the usual "oh, you are such wonderful parents...". Let me assure you that you are always in my prayers, as you are the ones who 'suffer' through the injuctice. At times like this, I know that God had a reason for selecting the two of you. You give Clare the opportuntiy to blossom - just as she is! I am very proud. Thank you for taking such loving care of my Great-neice! Aunt Joan

Heather said...

Teresa, We used to, oh who am I kidding, we still do... say the same things about Caleb. He has fun in his own way. Sometimes that means joining in, sometimes that means just standing back and watching. Playing didn't come natural for him. he had to work at it, but I am proud to say that now at 11, he is playing like crazy. Not always with others, but he's happy doing his own thing .. It is great either way!

Noel said...

It is very hard to watch. Abi tends to hang by herself alot too in situations like that. It breaks my heart but doesn't seem to break hers so that should be enough for me...but it isn't. I just want her to have what other kids have, that ease,that comfort in thier own bodies....I am afraid it will always be my biggest struggle.
Thinking of you,

Michelle said...

I totally understand but I do think the longer she is in pre-school the more and more these setting will get more comfortable for both of you. I am not saying that everytime there is another birtday won't get a knot in your stomache and be sick about brining her, becasue you will...well I get that way. But, I have to say it has gotten better with time - both my knot and her fitting in.

cyberjock42 said...

Praying for you, Tree! We've had so many moments like that with Bridgette. In fact, she didn't "do" bounce houses (like the other kids) until this year (and she's eight!). The sensory stuff is so real - and so is the feeling of wishing your child was just "normal". I so get it. But you know what? God has taught us so much through Bridgette's "different" personality. We've come to appreciate that she marches to the beat of her own drummer. She has friends, and they all know she's a bit different - but they love her anyway. Clare will be the same, I'm sure of it. I'm convinced that these little fighters will be the ones to change the world. (or in the case of both Clare and Bridgette steal the spotlight on stages!) Sending you hugs across the miles. Wish we were closer so our kids could be friends!

The Pitchforths said...

It is so nice to hear other people struggle through the same things that I do. Not because I would wish it upon anyone else, but it's nice to know that someone else can say "I understand". So often people say that and I just want to yell at them and say "No you don't!" But to you I say, "I understand". I hope I can someday meet all you wonderful people. Hugs from Utah, Jan

Ava Jewel Leilani said...

I have to agree with Nancy and everyone else. Hang in there!