Why I Told a Nurse I Wouldn’t Change a Thing About My Cerebral Palsy

It’s been a great year. After a seven-year journey, I finally landed a job. And not just any job, I hit the jackpot of jobs! I work for a nonprofit organization that serves individuals with Down syndrome. I can’t begin to express how incredibly rewarding my job is. I love it! I’ve realized over the past year that I went through all the other job interviews and rejections because I was supposed to end up where I’m at. It’s without a doubt my purpose, and I’m grateful for each day I’m at the office.

Something happened today that got me thinking about the past year. Well, a lot of years, actually. I was getting an annual review done by a nurse for a Medicaid waiver program that I’m on called Community Living and Support Services (CLASS). She checks in on me once a year to see how things are going and if my disability has changed. For those of you who don’t know, I have cerebral palsy.

I told her that it would be a pretty dull meeting due to the fact cerebral palsy doesn’t change much. I laughed as I said it and threw in an “it is what it is.” I’m very comfortable with my disability; it has its challenges, but who doesn’t have challenges, right? She said, “Well, with science these days, you never know, it might be a non-issue one day!” Comments like this don’t offend me in any way, shape or form. I hear it frequently.

This led to a discussion about research — which I do support — and I agreed that one day her “non-issue” comment could certainly be a possibility. Then I thought for a minute and said, “You know, I wouldn’t change a thing.” It surprised her, maybe because she could tell that I genuinely meant it. This isn’t the first time I’ve had this conversation with someone (and I’m sure it won’t be the last). I just find it interesting that people are surprised by my response.

From their viewpoint, my life would be much easier if I weren’t disabled. I don’t necessarily agree with that, though. No one is given a life without challenges, otherwise things would pretty uneventful. The fact of the matter is I’ve adapted quite well to challenges I face, as I hope most people would be able. Cerebral palsy is just a part of who I am. It’s by no means who I am. The truth is, I’m a young woman trying to figure it all out, just like most other people my age.

I don’t know, maybe the moral of the story is life is what you make of it, and I must say I’m splendidly happy with this life.