It’s Megan again. Still writing…
My son has a disability. How long did it take me to be able to say that? I can’t remember; it’s been so long now it’s become normal. Wait… did you even know I had a son? Or that he has Cerebral Palsy? There’s a good chance you didn’t until just this minute because I don’t talk about it much. Not because I’m ashamed. Not at all.
I don’t talk about it because if I talk about other things I can think about other things and this thing that is there every minute of every day, the thing that drives the bulk of my days, will fade to the background for a while.
There is more to me than being the parent of a child with special needs, but sometimes I have trouble finding that. What the doctors and medical professionals don’t tell you when they pass on the information that something is wrong with your child is what that means for you. They’ll tell you what it might mean for your child. They’ll lay out specific challenges and the mights and might-nots. But they won’t tell you this: Your life has changed more profoundly than you expected it would when you saw those two lines on that pregnancy test.
That day came almost 13 years ago, when Mitch and I sat with our six-month-old on the floor in the carrier between us, being told that our son would probably never play professional sports but that he’d probably walk and here’s an article on a little girl who had half her brain removed when she was six and now she’s doing amazing in school so that should make you feel better.
I was in a daze for weeks, but I got through it. And then the harder part began. Therapy three or more days a week, a whole slew of specialists to see, working with Mack at home to try to give him the best start. I worked full-time from home then, so I spent my days getting tasks done in between therapy appointments, meals and at least a half an hour a day of therapy homework. When I was laid off from that job, I went on one interview before I realized that there was no way I could work outside of my house. No day care would take a 3-year-old who couldn’t walk and wasn’t fully potty-trained. And who would take him to physical therapy? And occupational therapy? And speech therapy? And the growing list of doctors?
Over the years things have changed. Mack finally took his first steps at three-and-a-half, eventually he learned to dress himself, put on his shoes, brush his teeth. But still, to this day, my world revolves around his. I work only part-time because he still has therapy and doctors and now he has braces and new issues he didn’t have a few years ago. In the afternoons I help him with his math homework because he’s got some type of learning disability or something that makes him struggle in this area. He can get himself a snack usually, but sometimes he needs help opening a container. His seizure medication needs to be doled out into a pill case so he can access it as the online pharmacy will not grant our request for non-child safe bottles. Outfits need to be checked to make sure zippers are pulled up, waistbands aren’t hopelessly twisted. Shoes have to checked to be sure the no-tie laces are pulled tightly enough. He is becoming more independent, but slowly. So slowly.
There is insurance to wrangle, benefits to confirm, referrals and approvals to garner. There tests to schedule and follow-up appointments to make and attend. It is a full-time job, one that I’ve done day in and day out for coming up on 13 years.
I do not complain; there is nothing to complain about. It is what it is. He’s my child, I love him, and I will do whatever it takes to make sure he has a full, healthy and independent life. And I know how much worse it could be. He will be independent. Not every parent of a child with his condition can say that. He is smart and articulate and funny. I am lucky.
But I hope you will forgive me if I don’t care to talk about it.