Disability

“I am conscious of a soul-sense that lifts me above the narrow, cramping circumstances of my life. My physical limitations are forgotten- my world lies upward, the length and the breadth and the sweep of the heavens are mine!”
― Helen Keller

I’m going to say it. I hate the word disability. I hate everything about it. It is like lead in my mouth. Mia has a disability. She is disabled. I say it and choke on it. Yet I say it. I write it. I think it. And each time I hate it more.

I don’t hate it because I don’t want my child to have a disability, although that is true too. I hate it because it only describes my daughter by what she can’t do as opposed to what she can accomplish. It limits her. It diminishes her. And I hate that word for doing that.

It’s just a word. Semantics. I know it shouldn’t matter, but words matter to me.

I know I’ll get over it. I know I’ll grow up and accept the word for what it is, but today I wish it didn’t exist.

I know it will be always be a part of her story. I just hope it doesn’t become her only story.

High Functioning

“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.” ― Shel Silverstein

The question keeps coming up – The question of functioning. “Is Mia high functioning?” If you’ve ever asked me this question or suggested it, please do not feel guilty. I’m not offended in the slightest. It’s a question I would have asked. It’s coming from of a place of love and wanting to understand. I get it.

So is Mia high functioning? I think I’ve found plenty of creative ways to dodge this question. Is Mia doing well? Yes, she is. She is meeting most of her milestones on time or in the range of “normal.” Are there areas in which she’s delayed? I’m sure. I couldn’t tell you what they are because I’m not as concerned about delays anymore. One step at a time. One milestone at a time. One victory at a time.

As parents, we all want to know the future. As I left the hospital with Fynn, I thought to myself, “He’s going to be smart and capable and perfect.” Later on, when his speech was more and more delayed, I realized that he’s smart and capable, but not perfect. I think we all understand that perfect just doesn’t exist. Not on Earth anyways.

But as I left the hospital, there was no assumption that Fynn wouldn’t be capable. There was no assumption that he couldn’t be whatever he wanted to be. His possibilities were endless.

When I left the hospital with Mia, I was thrust into the world of best case scenario. What is the best case scenario of having a child with Down syndrome? Independent living? Group homes? High functioning?

I believe that this question comes up because high functioning, to many people, means independence. A life filled with joy and not misery. A life really close to “normal.”

The reality is that I have no idea if Mia is going to be capable. I have no idea how that extra genetic material will limit her growth and development. Nate referred to it once as “a blind investment.” It’s a blind investment in her future. Just like with Fynn, we are going to do everything humanly possible to give Mia the best possible life she can have. And then we’re going to pray and trust because only God can move mountains for this little girl.

But here’s what I’m going to do. I’m going to do her the same favor I did for Fynn. I’m not going to put up a brick wall and tell her that everything on the other side is impossible. We’re going to be the house of possible. And if those possible things turn out to be impossible for her, then we’ll accept and love and move on.

As I look to the future, I would rather her life not be measured by how “useful” or “independent” or “successful” she is anyways. I would rather her life be measured by how much love, kindness, and charity she shows others. I want her to love because God first loved her.

And in the area of love, Mia is very high functioning.