Forever Young: Living With a Child With Disabilities

February 27, 2013Leanna

Six is a wonderful age; full of curiosity, bravado, and a sense of purpose. Everything is new and worthy of discovery. Even better, that pesky motor control thing that has caused such frustration for the first few years is finally coming under control. Six is a big kid who is off to school, can ride a bike, and can fix things with dad. Six can spell their name, fold socks, and put on their own pajamas. Six is good.

But what if 6 is all there is? All that there ever will be? People accept an 8-year-old who still acts 6. They are just "young for their age." People will tolerate a 10-year-old who still acts 6 if the parent looks exhausted enough. But a 13-year old-who is still acting like a 6-year-old is a serious social problem.

I know, because this child is my son.

My son was born too early. The twin who got the short end of the genetic and in-utero stick. The weakest link, if you will. Totally not his fault. He holds no blame in this. He did nothing wrong. He just got a bad draw of the cards. Unfortunately, he will have an entire lifetime to play this hand. After a complicated infancy, which included frequent hospitalizations, a tracheostomy, a feeding tube, 'round-the-clock nursing care and much, much more, he has blossomed into the 6-year-old we call our boy. Mentally deficient, socially challenged, and physically different; these are the traits that define who he is. At least, these are the traits that society uses to define him.

I have read the stories written by parents of children with special needs. They refer to these children as "a blessing from God," their reason for being, their light at the end of every day. I wish those parents all the best and am happy for them that they can look at life this way. For better or worse, I'm not one of those parents. Don't get me wrong; I don't wish my child any harm. I love him and will care for him as long as he needs me to, but this is a tough row to hoe, and someone needs to present the other side of the story.

Here's the thing: Getting through the physical challenges was the easy part. Didn't see that one coming, right? It seemed hard at the time but looking back now, it really wasn't. When your child is sick and needs another surgery, a different medication, more therapy (insert any number of choices here), you just do it. You go into full-on parent mode: You advocate for your child and get them the lifesaving healthcare that they need. And you pray that they don't die. You pray every minute of every day that they don't die. A parent caring for a medically intensive infant or child is focused, driven, and motivated. You have a clear goal. But what comes next?

For many us, it is the sequelae of those medically intensive years that define our later lives. Brain damage and low IQ from lack of oxygen to the brain at critical times during development result in educational challenges that will careen the calmest parent to the limits of their patience. Physical limitations from muscles that were too busy breathing to worry about things like dexterity or coordination means that the child in question will never make the team or be the best at any sport or musical instrument. Watching your child be rejected over and over can really tear up a parent's heart. Relationship skills that are rooted in medical care and constant parental supervision don't lend themselves very well to play dates and peer relationships. Who are your friends when you have no friends? Your parents fill that void, too. And don't even get me started on the bullying issue.

What comes next, indeed?

Some day I will leave this earth. I will leave behind a child who will be a 6-year-old in a man's body. We're back to that social problem again. Where does someone like this live? Where do they work? Can they work? How will they not get taken advantage of every single day? These are all things that I struggle with on a daily basis.

For now, I plan. I try to teach the boy to become a man, and I hope for the best. I love the child that is my son for who he is, for his joy and discovery, and I live for the good days. Meanwhile, the perpetual 6-year-old in my life is happy to ride his bike and play a video game. But then, what 6-year-old wouldn't be?

Leanna, who prefers not to disclose her last name, is a registered nurse with a degree in Emergency Management and Public Safety. She works in an emergency room in Illinois, where she lives with her husband and 14-year-old twins.

Related Posts