How I’m Trying To Understand My Diagnosis While Tending To My Child’s

Recently, within the span of five years, I found myself characterized as an individual living with a disability.

I am also a parent of a child characterized with a disability.

During this time, I have thought a lot about language and the labels we assign to one another, and the word “disability” in particular.

I have decided that not only do I not relate to the word, personally or as a parent, but I really do not care for the word at all.

And yet, I also have not landed on a word that does resonate with my experience and perspective. Or maybe finding a word just isn’t that important to me.

Paula Schuck sees all of the eye-rolling that happens when strangers experience her child's invisible disability. And she wants that to stop.

His Versus Mine

While I haven’t found the right word for me, I have noticed how much easier it is for me to talk about my son and his diagnosis than it is for me to talk about myself and mine.

In fact, given that very few people in my life are aware of my diagnosis, I am even reluctant to write about it here. Right now, my disability is relatively hidden in that most people will not know just by looking at me, or if they know me as an acquaintance/colleague/neighbour only.

Unless you are present to observe my daily reality, then you will likely not suspect anything.

Mostly because my symptoms are managed well right now, and sometimes because I cover it up or compensate somehow. I guess I am still learning how to be comfortable living with my disability publicly.

I get that I probably haven’t adequately or properly processed my diagnosis yet. It can be relatively easy to neglect yourself when raising little ones, as I know most parents can relate. Or maybe it’s some kind of defence mechanism or coping strategy. Am I in denial? I suppose it’s possible.

"Maybe I just want to worry about it when the time comes."

Maybe I don’t want to acknowledge that I have a currently incurable condition.

That one day I may not be able to do something I want to do because of this diagnosis.

Maybe I just want to worry about it when the time comes.

That doesn’t mean I neglect my health completely. I attend all the appointments. I take the medicine. I follow the doctor’s orders. I am a “compliant” patient.

And I definitely don’t want my kids to worry about me.

Here is how one parent takes care of her child who is diagnosed with fetal alcohol spectrum disorder.

Talking To My Kids

But at the same time I don’t want to lie to them either. I think it’s OK to share age-appropriate information, whatever that means. I did talk to my oldest about my diagnosis once, but I kept the conversation light. I don’t think he was alarmed. Maybe curious at first. And we really haven’t spoken about it since.

I honestly believe that everybody has something, and some people have more than one thing. This diagnosis is one of mine. In many ways I feel lucky. In fact, I celebrated the day I received the diagnosis. Fifteen years of wondering what the heck is wrong with you has its disadvantages too.

In the end, I think I’m grateful to have several daily reasons to remember to soak up life and live in the moment.

It also helps with cleaning house, you know? Getting rid of negative energy, from any source, that just weighs you down, one way or another.

"I get to decide who I am."

It gives me permission to be a little pickier about how I spend my time, and with whom. With no apologies.

That is a gift in itself.

I have come to understand this about myself too: I really don’t care how someone else may characterize me on the basis of a diagnosis (as evidenced by the publication of this piece).

I get to decide who I am.