As a parent of a child with a disability when you first get the diagnosis, it’s the only thing on your mind. It’s the only thing you talk about, worry about, obsess over. But then your child is born and everything changes. Their disability is the furthest thing from your mind, you hold them in your arms, you see their first smile, hear their first laugh. You forget for a while that there is anything even wrong with them, until one day you see your friend’s child, who is younger than yours, accomplishing milestones your child isn’t even interested in trying yet, or worse, your child has their first seizure, or fails their hearing test.
For me, every new diagnosis knocks me on my ass. Oliver’s disability is like a giant neon sign following me around flashing the words Down syndrome so brightly that it inhibits me from seeing the rest of the world. Oliver’s list of problems grows with each passing month, and while none of them are life threatening the longer the list gets, the harder I have to fight to get that flashing sign out of my periphery.
A few days ago out of the blue the bright neon flickered out of the corner of my eye when I least expected it. Oliver’s biggest issue is his low muscle tone, he only sits up straight for as long as he deems necessary and the rest of the time he looks like he’s in a constant yoga pose called the folded lawn chair. On this particular day he sat up in both a cart at Target and a high chair at lunch. I was so proud of my Ollie and we had a quiet celebration of his accomplishments. But then another baby came into the restaurant that couldn’t be more than six months old and he flipped the switch of my neon sign and blinded me with its bright lights. While Oliver gags on the smallest of non “stage two” pureed foods, this baby was eating everything he could get his hands on. As I saw him cry and reach for the plate of food in front of him that neon sign floated towards me getting brighter and brighter, as it does sometimes, and smacked me right in the forehead.
That’s the thing about your child having a disability; you don’t see it until you are reminded of it, until the switch is flipped and the halogen fills the tubes of that brightly lit sign. You can be celebrating your child’s accomplishments one minute and the next someone says that your child is shockingly small for being one year old. Or they ask if he’s walking and you say no, then they exclaim, “Oh, well crawling then”, and you sigh and your eyes squint from the bright lights of your sign and you explain, no not yet but he’s so close even though he’s no where near it.
It’s funny, these little lies we tell as parents of children with disabilities. These lies aren’t for us, but the people around us. We know that our children will get where they need to be, we tell these lies to calm our family and friends. As time goes on our neon signs become a familiar face, the little lies get easier, their accomplishments become that much more important, and we know that when they say that first word, eat their first cheerio, and take their first step that we can turn off our neon signs for a few moments and smile because we knew they would get their, in their own time.