Sunday, October 7, 2007

Life aint always beautiful

Isn't that the truth. 2 children who's websites I frequent died yesterday. They both had a brain tumor called a diffuse pontine glioma. It is inoperable and treatment is aimed at slowing it's growth. The average life expectancy is 6-12 months.

This morning Hailey and I were talking about hard subjects, as we frequently do. We talked about Alex and how he fought so hard to be here and how people aren't always perfect but sometimes the least perfect have the most to give. I wonder sometimes what the greater plan is for us all. The why's are so difficult to deal with sometimes. I don't think I will ever understand why Alex died. I don't know that any parent who loses a child ever gets that moment of clarity.

I think about all the children who are simply denied the chance. The babies who are lost to "medical termination" upon their parents finding out they have down syndrome, or some other abnormality that makes them "less than perfect" in the eyes of the world. It makes me angry. I wish I had my disabled child, I WISH I could push him in a wheelchair, I wish I could hug him, kiss him, and sing him to sleep.

I am comforted in the fact that we did everything we could. He was in an amazing hospital and every medical opportunity was available to him. We could have "let him go" as some would have. HE chose when it was time to go, I'm grateful for that.

Every one of us is less than perfect in some way. If we ought to abort a baby because it's not "normal", where is the line? Aborting one who has a cataract? who will need a brace for scoliosis? And when is the line drawn? If they are taken before birth it's ok, but when will we start moving on to sacrificing 2 year olds who contract a disease? I just don't understand how we think we have the right to decide who lives or dies. It doesn't make sense.

I was once reminded that God gives us free will, but he also gave us a brain. But did he intend us to use that brain to make decisions best left to him? Where is THAT line? You have to draw it somewhere.......... so where?

I struggle with these questions. A few days before Alex died I finally broke down completely and relinquished control to the lord. Right there in front of the dormatories of the University, in front of the busy hospital. I'm sure I looked like a lunatic but the weeks of what felt like running through water finally caught up with me and I had nothing left to give, I had no fight left in me. I told God he wins, I give him control. It was then that the put my son out of his misery. I never gave up on Alex but I gave up my selfish fight for him with God.

Some people don't understand the decisions C and I make regarding our family. It's difficult sometimes because it would be senseless for us to learn the lesson we did, to give up control, and then try to take it back now. But what does God intend for us to have control of, and what does he solely take control over? I just don't know.

To some people it's all so simple. It's just not for us. I don't think things will ever be simple again. Things use to be so simple even though we didn't realize it, now the seemingly smallest things just aren't anymore.

It's exhausting sometimes. This post probably makes no sense either hehe, it's one of those that I'm just typing as I'm thinking so I apologize for that. It's one of those more for me than you kinda posts.

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