David to my brother: Does Z (his baby) have Down Syndrome?
Brother : No she doesn’t, she’s just a regular baby
David: Noah has Down syndrome and he will have Down syndrome forever
Brother: What does that mean?
David: It means he needs to go to lots of therapy and work very hard
Brother: That’s why you also need to be there for him. Will you be there for him?
David: You know what, I thank God that He gave Noah such a cute smile. I love Noah.
Sometimes I think we talk about Down syndrome at home too much. Sometimes I think that David shouldn’t come with us to Noah’s therapies and doctors’ appointments too often. Sometimes I wonder what he thinks of Noah’s classmates, of our DSAPI family and of Best Buddies. And then David pulls out this. I have underestimated how he has so far processed our new normal.
David represents to me the best of both worlds when it comes to awareness. He knows Noah has Down syndrome, he knows of Down syndrome and he understands who Noah is and how he is. I feel that David is developing empathy, which overwhelms me. I also shamefully realized that I’ve also been oblivious to the fact that David has adjusted so well to our new path.
Awareness is what David has, but of course he has homecourt advantage. Down syndrome is a big part of our family and we live with this fact everyday. What I am hoping for (and working it) is that awareness fuels action. I hope that he picks this up from our DSAPI community and our work with Best Buddies. I hope that by seeing me and Dan striving to create a path towards a more inclusive society that it also encourages him to do the same. My fervent prayer is that he turns out to be his brother’s best advocate when the time comes. My prayer everyday is that he continues to understand and that he never resents the fact that there will be times that our finances and efforts will all go towards Noah’s needs. Or if that time comes, that he feels safe with us to talk about his issues.
I write about Down syndrome here a lot too and I hope that here in my home on the web that I have created an honest picture of what our lives have been so far -from the initial shock of the diagnosis to the start of our new normal. My IG feed of course includes Noah and I often share facts about Ds plus campaigns such as End the R Word. I hope that because our family is out there, that at least you, would know one family who has a kid with special needs. I hope that by sharing our stories that I help demystify some things about raising a child with a learning disability.
My wish is that in the fortunate event that you are able to meet a family of a child with special needs that you look at them with eyes not with pity but with empathy. I hope that in that instance, that you will choose to talk to that family and that you will encourage your kids to play and include their child who has Ds (or autism or another learning disability) — just as you would with any other family. That you will see beyond the disability and just see the child. That you will always choose kindness because you know Noah.
I wrote this post for World Down Syndrome Awareness Day, which was on March 21. March 21 is also 3/21 and stands for the third chromosome of the 21st pair. It is this extra genetic material that causes Down Syndrome.