So after a lot of thinking I decided that I would try and do some research about Jackson's condition. Mostly because of not knowing what to expect is kind of scary and wondering if the choice to not label him is actually hurting us. I got a letter in the mail stating that Maine Care will not cover the supplies for the equipment that the hospital had said we needed in order to bring him home. My question is why would they cover the cost of the rental of the equipment but no the supplies that are needed to use the equipment. First of all I am mad because I didn't want the stuff in the first place. I knew he didn't need it and I was right. We never used any of it. The hospital pretty much told us that if we went against what they said it would be consider child endangerment and going against medical advise. So we went along with their advice and now our insurance is saying based on the information that was provided by our provider they have denied our request. So I am just wondering if my stubbornness to not label my child is going to hurt him in they way he is provided for medically.
I decided that I would try and prepare myself for what the future may hold but I was very disappointed. There is not a lot of information out this since this genetic condition is very rare. He has the 15 q 26.2 deletion. I find a lot of varying information but most of it is for other 15 q deletions. So I guess we are going to just learn from him as he grows. He has already amazed us in some many different ways and I am sure he will continue to as he grows. A good friend of mine recommended that I read an article that was posted on CNN about a father and his daughter titled "I almost left my disabled daughter" It was a great article and it really makes you think. Life is rough but no matter what your child didn't ask to be different and all they want is for you to love them no matter what. They are the most amazing gift you will ever have in life. Thank you Duane it really helped me put my life in perspective.
On a happier note our camping experience this weekend was awesome. All 3 boys enjoyed the tenting experience minus the bug bites. It was also great to spend some time with some great family and to witness an engagement of two awesome people.
As hard as it may be to accept, what he has is part of who he is, and that doesn't make who he is any less GREAT or SPECIAL. The difference in acknowledging what he has, is being able to fight for what he deserves and may need. As he and you go through life, there are (unfortunately) going to be many people trying to deny him what he needs, and one of your most important roles is going to be a fierce advocate for your little man. And that is why I think God gave him to you two, because you will love him unconditionally and fight for him endlessly. Love you guys and keep the Faith...
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