Saturday, April 11, 2009

This is tough

I try not to complain too much, although I wouldn't be real if I didn't. I am a walking nutcase lately. Steve and I are both about to pop with stress. I know that very few of you have the actual experience to relate to what we are going through. But I have come to understand that there are those out there who still try and those who would rather not, and act like life is just normal. I can't help but think that some of the latter group thinks that Steve and I are just a bunch of neurotic whiners that really don't have it tough; we have good jobs, a nice home, two beautiful children, food on the table. Believe you me, we appreciate these things. But I would give up all the luxuries of life to have something that would cure Zach and help Sophia.

I had to hear from someone today how hard life is for someone they know who has a child with leukemia. They went on to tell me how they got together with someone they work with and bought toys for this family, and visited them. This person has done nothing even close to this for us. Leukemia is a terrible disease, and having a child go through it is extremely difficult, I am sure. Maybe I am extremely insensitive and selfish, but I am not sure if our experience with Zach is all that different. At least the medical community is embracing childhood leukemia as a medical condition and is coming up with treatment options. Right now, the medical community will barely acknowledge that there is anything medical or treatable about autism. If our kid had leukemia, maybe someone would make us a casserole and drop it off once in awhile. No one does that when your kid has autism, yet it would really appreciated nonetheless. Why is this?

I know I may be unfounded in saying that there are people out there with a lack of apathy for us. Perhaps they don't know what to do or say. I suppose I felt that the letter we sent out when we realized Zach was autistic would circumvent this. I am disappointed that it didn't totally work. I still think these people stink, that they certainly are not there for us when we are down, and while I may be able to forgive them, it has certainly hurt our relationship. I wish I could say that it was all fleeting friends who were like this to us, but indeed, it is actual family members more than anyone else.

Perhaps people think they would "handle this" better than us. Perhaps they are right. We said we needed help - we heard how "busy" they all are. Oh bite me. When I hear about people going out to dinner, watching TV, going on a weekend getaway, shopping trips, it makes me want to hurl about how "busy" they are. Everyone is busy, and our society allows this as an excuse for bad behaviour, which I find reprehensible. I remember when I had started to get into the bad habit of this myself, I was really appreciative when a coworker pointed it out to me, in a very nice way. It is a bad habit, and everyone does it way too much. So stop, stop right now I tell you, and I will do my best to never do it again myself.

Holy Easter and I have such anger - I hate that one of the most wonderful times of being a Christian is emphasizing what a sinner I am. I pray that I can get through this soon. I pray that someone comes and helps my family just a little but more, someone who may surprise us. We need it right now, Steve, Sophia, Zach and me.

I really would like it if people just checked in from time to time - and for those of you who have done that - thanks so much. Steve and I really appreciate it. For everyone else - is it too much to ask that you stop over for a cup of coffee or tea once in awhile? Civility anyone? I sometimes wish we had never moved, because my friends on the other side of town were terrific at these casual, informal, yet important visits. 45 minutes can mean a lot.

So thanks to all of you who have been there for us. And please pray that I can forgive and get past those who have decided we weren't worth the effort.

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