Thursday, February 25, 2010

You know the situation is not good when you feel as though death would be better than what life is. Sorry, friends, just being honest. The sentence this disease has placed upon my sweet Jonathan is so incredibly cruel. There is no end in sight. No treatment. Nothing to make it better. And to always fall through the cracks because you are an "out of the box" kind of kid in a world that doesn't make accommodations for "out of the box thinking".

It would be less cruel to have no treatment options and yet, have the hope that you will be free from the pain and sickness and be with Jesus. This hypothalamic rage (the term for what is happening because his hypothalamus is broken.) is more devastating and ravaging of quality of life than so many other things. And we can't fix it. You just can't have a hypothalamus transplant. Believe me if you could, I would be the first in line to give him mine!

I am trying to prepare right now to be the advocate for my child. Somehow I need to respectfully ask the doctors to look outside the box. Good thing I have been taking the Love and Respect class...hopefully by now I have figured out, at least in a small way, how to speak in the "male" language. I need the psychiatrist on my side. There is no other psychiatrist to turn to. And yet, I sense he is afraid to be aggressive and do what is needed to help Jonathan. Please pray for the Lord to give me gentle words that will make sense to him. Pray that he can let go of the things holding him back from acting in Jon's best interest.

Please pray for me to know when to fight and when not to. When to accept what they say and when to challenge them. Pray for me to be bold and to be able to act upon that gut feeling the Lord gives.

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