Disabled Parents

… As in parents of children with disabilities.

I have two words for you as adjectives. Sucks. Hard. A little bit of background for those of you just joining me.

My youngest, Logan, is four years old. His diagnosis: Aortic Stenosis (25%) with a bicuspid valve and secondary left ventricular hypertrophy. In layman’s terms (i.e.: MicheleSpeak) his aorta is 25% too small, so not enough blood flows through his heart (and therefore to the rest of his body). The aortic valve normally has three petals that open and shut in conjunction with each other. Two of his fused together in utero. This causes a backflow of blood into the left ventricle. The left ventricle then must work extra hard to put the extra blood out, causing it to enlarge and harden – just like any other muscle that you work out. Prognosis: open heart surgery, probably around the age of 8 or 9 (we’re going backwards – used to be around 21 or 22) to replace both the aorta and aortic valve with prosthetics. His day to day is really no different, however his smaller blood flow causes him to be smaller than other kids. He acts a little younger than other kids his age. No medications are needed for now. He won’t be able to play contact sports.

Joseph, my oldest, is 6. He’s in first grade. He has learning disabilities, and as of yet undiagnosed behavioral/mental issues. His learning disabilities are easily illustrated. If you ask him, “What is a clock?” His answer will be, “It’s 7:00.” He doesn’t process the information the way you intend it to be represented. As for his other issues… The only way I can describe it is having a 17 year old’s anger in a 6 year old’s body. There’s no way for a 6 year old to process that and he then lashes out in anger and violence. Add the learning issues to it – and he’s usually a ticking time bomb. Prognosis: No idea. We’ve been in the diagnosis phase for a year and a half now. That’s nothing. I noticed something was off/wrong at 6 months of age when his father had to disengage his teeth from my chest physically.

Here’s the rub. If you were to look at my kids, you wouldn’t be able to tell that they’re disabled in any way. Logan and Joseph are vivacious, sweet, smart, and fight as brothers should. There are no wheel chairs, nothing physical to give other people a clue as to what their different needs might be. That’s my job as their mother.

So what sustains a parent through this? Both of these kids will need care and help throughout their childhood, beyond the “norm.” In fact, Joseph may need longer term care. What keeps me here? How do I do it? I think two things. Love and Protection. When one doesn’t sustain me, the other kicks in and takes over and vice versa. They are a part of me. I carried them for 9 months. I sustained them with my very body. There is a primal love there. It’s my job to protect them – and really, if not me, who? They didn’t ask for this, and yet here are these two little beautiful souls. So, I love them, and someone has to.

What some people don’t get is the fact that it simply is. There’s no fault anywhere. It wasn’t caused. They just are. We simply exist. This is their reality.

And really what choice do I have, other than to get through it? Leave? Abandon these beings? Abandon my husband to do it himself? Run away with him and let the state sort it out? I think not. And yet? And yet. The thought of less complications, a simpler life, and well – singlehood are all very tempting thoughts. But I think that’s true of all parents. C’mon – after a bout with an entire family with the stomach flu… Who wouldn’t have a little daydream of BC (before children)? But you know what? Those parents got through that stomach bug. Why? Love and protection.

Please stop asking me the question, “How do you do it? I’m not sure I could!” Instead, ask something else. “What can I do to help?” “Need me to baby sit?” “I was thinking of you today, want to chat?”

How could I NOT do it??