I Knew Today Would Come

I knew someday that my niece and nephew would start asking more questions about Will and Down syndrome.  Because they have had to tag along this summer to Will's appointments, they have recently been asking why Will goes to therapy but Lillian, their baby sister does not.  Until Lillian came along, I think they thought that all babies went to therapy.  They are also curious as to why Will has a Buddy Walk, but they don't.  This is a hard topic on so many levels and one that my sister and I have discussed many times.  First, we don't want to say it is because Will is special and imply that they are not.  Second, I especially don't really want them to see Will as different because at this point in Will's life he is more like them than not.  I do think there is a double standard here, and I am willing to admit that I take part in it.  I want the world, and Will's cousins, to see Will as typical and capable and treat him like everyone else, yet I want them to acknowledge and accept his disability and treat him with extra patience because of it.  Third, it is hard to explain chromosomes to kids without confusing and scaring them!

Well the cat jumped right out of the bag today!  I was caught completely off gaurd.  After watching a signing video with all the kids, there was a commercial at the end that mentioned certain videos for children with Down syndrome.  Ava looked up at me and said, 'DD that lady said Down syndrome.  I know William has Down syndrome.'.  My heart sank.  I love these kids like my own and had thought about this moment since Will was born with his special little chromosome and yet I could think of nothing to say.  She said 'What is Down syndrome?'.  So somewhat in contradiction of what I said earlier, but trying to think on my feet, I said 'It is something that makes William a little bit special and a little bit different.'.  Expecting to go on and on about chromosomes and therapies and Buddy Walks and thyroids, I was cut short when she said 'Ok'.  Well that is that.  At least for now.  And all the while Jonas sat there playing with Will's dinosaurs, oblivious to our conversation.  Which is just fine with me.  I love these kids and I love how much they mean to Will and I am happy with how things are for him and them right now.  And I guess I am a little afraid that it will change if they know too much.  I wish they could stay this age forever!