I wish he could just be normal and healthy and run around and play with his brothers and speak to me. But that’s not reality. The reality is it’s hard. The reality is I hate it.
I recently ran across a song I wrote when I found out we would be having twins. It’s an incredibly cheesy poem, wherein I fantasize about all the fun adventures I’ll be having with the twins: running around and rough-housing, the projects we’d work on together, the conversation’s we’d have… the fun experiences I’d introduce them to.
A song I wrote about the emotional experience of having a child with severe disabilities, wanting more for my child than he’ll get to experience in this life.
Late one Christmas night, less than two months before his 3rd birthday, I was overcome with emotion and a strong sadness over Hunter’s condition. The feeling was so strong that it brought me to uncontrollable tears, kept me awake, and ultimately lead me to write the following.
When you find out you’re going to have kids, there are certain things you imagine. You imagine your child running, rough-housing, and saying those funny things kids say when they think they understand a concept more than they actually do. When you find out you’re having twins, that picture is multiplied. Not only do you look forward to when you can interact with your child, but you look forward to seeing them grow up together, play together and get in to mischief together.
You don’t really consider that things don’t always work out that way.
I have three boys, all of whom I love more than anything, and one of whom is severely physically and mentally disabled. As you might expect, people are often curious about his condition, and about how we have dealt and continue to deal with it. Here is at least some of his story. You can…