I have been doing the special needs parenting thing for almost 10 years now. One thing I have learned is that most of my life is out of my control. No matter how much I desperately want to help my wife and kids I can’t make anything better. I pray every night and ask God to please remove these burdens they are forced to carry and give them to me. Every morning I wake up to the fact that either he’s not listening or what I ask for simply isn’t possible. As a father and husband I feel (admittidly unrealistically) that I should be able to make things better for them. The fact that I can’t fix this eats me alive inside.
As I sit here writing this Gavin is walking into a wall, EJ can’t communicate, ER is emotionally traumatized and Lizze is in more pain them most people would feel in a lifetime. I can’t even begin to explain the feeling of complete and under helplessness I feel. It’s a feeling of such deep despair that I wouldn’t wish it on anyone. My whole family (wife and 3 boy’s) are experiencing medical and/or mental health issues that for the most part can’t be explained. Lizze and Gavin have had to endure painful tests to try to uncover clues as to what’s causing these things to happen. Gavin had blood work done at least once a day while he was in the hospital. This was devastatingly traumatizing to him. It may sound very dramatic but unless you have seen what Gavin goes through when blood work is necessary you will just have to take my word for it. A very big reason why this has to happen is because we only have half of our medical history. That precious information can and will help my kids to avoid more painful testing as well as help the specialists to put the pieces together.
As a father desperately trying to help my family I would give anything acquire that information. The sad truth is that the person that has this information refuses to give it to us. No matter how many times we or anyone else asks for it “SHE” tells us no because she “promised Lizze’s mystery biological father she would never reveal his identity”. Sometime I wonder if she even knows who he is. Here I am trying to keep my family from falling to pieces and there is someone out there with the power to help my special needs babies avoid anymore pain and discomfort and because she doesn’t want to “break a promise” or face the choice she made in the past my kids (her grandkids) have to suffer. I’m not super religious but I do believe that she will have to answer for this in the end and I would love to be a fly on the wall when she tries to explain her actions. I’ve said enough about that.
Sometimes I just want to feel normal. I want to forget about all the of this. When I was fresh out of High School I did a Habitat for Humanity trip to Appalachia. I spent a week or so helping to rebuild and repair houses. I talking extreme poverty like dirt floors. I learned so much form that experience. The one thing that I really struggled with was that some of the people had a brand new car or satellite tv. I just thought “your living on dirt floors and have no running water but you have a really nice car”. I didn’t get it then. I do get it now though. Sometimes we just NEED to feel normal, even if it’s for a moment. I need to feel like I have some control of the direction my life is going in. I think it’s important and okay to do things occasionally to feel normal (within reason). Sometimes to benefits far outweigh the cost. I personally really enjoyed gaming. I liked to just escape for a little while and forget about everything else going on. It’s not always the most responsible thing but sometimes it’s a matter of trying to preserve what little sanity I have left. Unfortunately, many times those little pieces of sanity have to be given up in order to survive. Oddly enough it feels good be able to physically do something to help even if it means giving up that little bit of sanity.