When Lily had her tonsils out and was in the pediatric icu the nurse took a complete medical history from us. It was very indepth and in all honesty quite frustrating. The nurse even said to us that all this information was in Lily's chart, they just wanted to see how well the parents understood the medical history.
So we went over her history from birth. The jaundice. The feeding issues. The heart condition. The thyroid. Her audiology history. Every illness, doctor visit and medication was discussed.
At the end the nurse asked if there was anything else I would like to add about my child's health.
"Nope. I think we covered it all."
The nurse prodded me a little more. But I had nothing to add. She seemed dissatisfied with my answer but eventually accepted my no.
Her behavior confused me. She was obviously fishing for something, but I had nothing more to add. We'd covered all the therapies, the delays, the specialists. What more was there to say?
Upon further reflection I realized I had never once mentioned that my daughter had Down syndrome.
When I was given Lily's diagnosis of Down syndrome it consumed me. I thought about it constantly. I researched, I cried, I worried, I researched some more.
It took over my life.
But now it is such a small part of my life. So small I didn't even find it worthy of mention when discussing my daughter.
It does not affect my day to day life as I feared it would. I am not caring for my child with Down syndrome. I am just raising my daughter. My funny, loud, sassy, silly daughter.
If I gave it some thought I could come up with ways Down syndrome impacts my daily life. If I compared my child to another almost two year old I am certain she would come up short in the developmental milestone measuring stick. But I don't care. I don't care to compare. I am no longer that first time Mom consumed with the development chart, beaming with pride when my first born child meets each milestone early. Not that there was anything wrong with me at that stage in my life, and not that I shouldn't have been proud. I was and still am. But I have learned that the timing of the milestones is not as important as the actual progress and growth. Lily grows and learns every day. She works steadily towards those milestones. Who cares when she reaches them? She will get there and I am enjoying the journey.
I could focus on all she doesn't do, but that is the saddest measurement of a person I can think of. My Husband comes from an incredibly talented artistic family. They can draw and paint in a way that seems like magic to me because I can't. I am creative in my own ways. Music, writing, crafting. I create in my own ways. But I am not artistic. I can barely draw a stick figure. How sad it would be if my Husband's family only thought of how I can't draw instead of what I can do.
Why do we measure development by what hasn't been achieved yet? It is one thing to assess what she isn't doing from the angle of "How can we help her achieve?" It is another to have a stranger ask if she talks yet, and then look at me with pity when the answer is no. She will talk, and I will love hearing all her thoughts in her sweet little voice. We will get there someday. In the meantime, she signs, she points, she makes her feelings known. Speech is not the only means of communication, and does she communicate with me? Yes. Yes she does.
I hope when people look at my daughter they will be able to see past the "disability" (I use quotes because I have such a hard time reconciling the fact that my child is classified as disabled.) past the list of things they think she "should" be doing. And instead I hope the world will see who she is. Her joyous spirit. What she can do.
Am I hoping for too much?