Recently the budget cuts in Oklahoma have taken such a huge toll on those of us with family members with disabilities. In fact I recently read an article about how many parents were afraid to die because of the state of our healthcare systems and provider services. This is a re-run if you will, but I think it is relevant to the current situation.
We had several deaths in our town in the past couple weeks including one of a little girl same age as my youngest son Kruz. This brought up something that I had discussed among some friends at a conference recently, and I think it’s something that every parent of a child with a disability really has in the back of your mind. I will warn anybody that’s reading this today that this is going to be a bit of a grim article, but it’s something I think that needs to be discussed.
Death I feel needs to be addressed because everyone thinks about it and it’s one of those heavy thoughts that can consume you if you let it. For a mother of a child with a disability this is somewhat of a catch 22. The question that I had with this group of friends was, “Is it better for your child to die before you or you to die before your child?”
To many I know this seems like a simple question. However, it’s probably one of the most complex questions you will ever have if you have a child with a disability.
The question in more detail is, do you want your child to die before you so that you know that they’re in a better place, and there’s no worry about what life is going to be like if you’re not there to take care of them. That question just brings up more questions. Who will take care of them? Where will they go? What will they do?
However no one wants their child to die.
I know this seems like a horrible subject, and no one wants their child to die but I bring it up because it’s something that has become very prominent in the media lately. I have read several stories about parents, especially moms, who have become so consumed by caring for their child with a disability and worrying about what will happen to them that they become extremely depressed. That depression become so serious that it turns to death. That sometimes include the parent and/or the child.
I’d like to say that I’m no expert. I’m not a counselor, psychologist, or psychiatrist. I’ve also never dealt personally with depression or had any of the feelings that come along with it. However, I know signs and I do know the outcome to be very serious, so I wanted to encourage anyone who may have any thoughts to seek help. Find a counselor, find a psychiatrist, call a hotline, do something to get yourself some help. Always try to give yourself some “you” time. I know how hard that is but I think it’s important that , 1. Remember that your child is the most important thing in your life, and you are the most important thing in your child’s life. You have to do everything you can for them to keep them safe and give them a better life. You are doing the best you can. I know there are times when it may not seem that way, but as long as you’re putting forth every effort that you have to try to get your child services, therapies, and resources then you are working to make that child’s life better.
2. Take care of yourself. If you don’t have the oxygen mask on first you can’t help your child; it’s that simple.
As for the initial question, I don’t know the answer, but I know this, and it’s just my opinion, I would never want to see my child die. I don’t know what’s going to happen after I’m gone or After Jen’s gone. As much as I hate to say it the responsibility will probably fall back on Kruz. We have to work now to put in place anything that we can to help when that time comes.