The Struggle Of Disability

I have always struggled with something that I can't even control. It's like a burden, and I hate to admit that. As I watch its legs try and move, or watch its mouth try and form words, I feel a couple of two emotions. One is regret and remorse forever having it, and the other is hardship on myself for the first emotion.

I had my son a little over 8 years ago. Me and my husband were so excited, ready to start a new life with our little offspring. It was a seamless birth. Almost nothing went wrong, and it even looked good when it came out. Our joy quickly faded though, as the doctor had to take away our precious son from us for the next 30 minutes due to "complications". Those 30 minutes were excruciating, and me and my husband counted down the seconds like they were minutes.

The doctor came back and told us a line that still chills me to this day. "I have good and bad news for you guys". My mind raced through all the possibilities that the doctor was going to tell me, and I couldn't handle the stress.

I left the hospital sobbing, glad that my son was alive, but sad about the news that came after. My son had been diagnosed with a very rare disease that compares him to the mind of a parasite than an actual human. The doctor had basically said that he would never be able to live on his own and that he would need almost 24/7 care to keep him alive.

At first, I thought that it could be doable. Me and my husband had a long conversation when we got home while we were just looking at it. It was sitting there, seeming almost lifeless, even though we could hear the settle breathing. We made up a plan hoping that we could follow that out of the love for our son if we could even call it that.

The truth is, it would never truly know that we were its parents, and that is a thought that has still been with me to this day. You can tell I have struggled trying to decide whether to call it my son or just "it" during the telling of this story, just because of how hard it is to know that there will never be an emotional connection between it and me.

8 painful years later, and it has been the biggest burden on our lives. I hate to admit that at this point right now, I can't find the words to say that I even love it. Me and my husband had so much trouble trying to name it, that we haven't truly even named it yet because it wouldn't even matter.

Most people might find what I am saying appalling, mostly the fellow parents. I truly wish I could think the same way as you all, but it is so hard when your "son" is nothing but pain in your life. I have tried over and over to find the joy out of this unique situation we have been put in, but I can never find it.

The reason I am writing this story is that today, me and my husband have found out that we are on set for another child. After years of talking and arguing, we have decided to send my first "child" to a center where I won't ever have to deal with it again. I want you all to know that this decision was not easy. Like I previously stated, me and my husband have talked about this since day one of its existence.

I am writing this story not for you to pity me, but to understand the hardships that come with taking care of a disabled child. Although most parents that will be in this unique situation may find joy from it, I feel it is important for people to know the dark side as well.