And

“You may be different, but we’re all creatures. All dinosaurs have different features.”  -Mrs. Pteranodon, Dinosaur Train  

Permanent makes me feel claustrophobic. I feel closed and locked in a box that one day I might outgrow and want to leave. I can’t get a tattoo because I can’t think of anything that I want to commit to looking at every day for the rest of my life. Labels feel permanent, like your name, it is yours forever. Even if you change your name, someone somewhere will still remember you as you were the first time they met you.

A whole new world opened to me when I started to understand that things could be “and” instead of just one or the other. “And” had so many different colors in her crayon box. Lines could be blurred and boxes didn’t have to fit forever. Things were penciled in instead of written in ink. There were no longer only rigid cookie-cutter options. One day could be this and the next day could be that. The creativity in the chaos was in its own way comforting.

Ellie was born with a truck load of boxes in which she could sit. Down syndrome. Medically fragile. Heart failure. Pulmonary hypertension. Failure to thrive. Physically delayed. Unable to feed. Cognitively delayed. Disabled. Different. Other. Special needs.

Every label made my stomach turn. Why? Maybe because they all sounded so negative. Each of them on their own, but also collectively, overwhelmed me. One more label was just another reason for us to be tethered to the hospital, an oxygen machine, feeding tubes or medicine schedules. One more diagnosis meant that she was different and we would have to be honest about that difference. It was one more in a list of things that one day I will have to explain to Jack in a way that he can defend to his friends.

Jack learning about how Ellie “eats milk.”

Ellie needed to start to school early so she could begin professional therapy to try to tackle her physical, speech and occupational delays. (I am not sure where they tuck their wings, but all of these therapists are angels.) When we started looking at schools for Ellie, we learned of another label. I asked, “Will she only be in classrooms with kids who have disabilities or will there also be…” I suddenly felt like I was in a foreign country unable to communicate because no word I knew would properly translate. Normal kids? Non-disabled kids? Abled kids? Kids without disabilities? “Typical,” said the teacher. “Our classrooms include typical kids too.”

Here I was, learning that I have a typical kid, Jack, and then Ellie who, “I guess is the opposite of typical,” I silently wondered. “That doesn’t sound right, but if she isn’t typical like Jack, then what is she?” The first word that popped in my head was “exceptional,” but that couldn’t be right either. “Jack is pretty darn exceptional, and he isn’t like Ellie. Exceptional sounds too positive. Could she be exceptional like him? She is different. She is special. Every night before bed we tell Jack that he is special, though. They are both special. Can they both be special?” My head was spinning. I just wanted to be sure that I was doing right by both of them by using the labels correctly.

I remembered talking to a friend months earlier about her son and his life as a college student. She told me about his dream to one day become a coach. Full of wonder and awe over how this superwoman was able to make her son’s college aspirations come true all while managing his Down syndrome, I asked her what he was going to do when he finished with college. Ignorantly expecting her to say something about moving him home and finding some way to keep him busy while trying to give his life some illusion of fulfillment, she humbled me by responding, “I’ll do what I can to help him find a coaching job.”

*Cue the light bulb* Of course. Absolutely. Just like I will move mountains to help Jack make his dreams come true, I can do the same for Ellie. If she wants to be a circus performer, an attorney or a pencil sharpener in a factory, her father and I can help her follow her dreams. Down syndrome nor any other of the diagnoses listed on her medical record should lock her in a box marked “Fragile.” There is the “and” again, not “or.” She can be all of those things that she inherently is AND anything she else she wants to be. She is different and will be different, just like Jack. Very typically, my kids won’t be typical.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s