This still ain’t Holland



This still ain’t Holland

There are so many things I wish I could say, but I don’t have the words. Or rather, I can’t force them out of my mouth.

WK turns 16 today.

Since he was about three, Hubs and I knew we had a handful with him. In the last year, that realization has taken on a whole new meaning. I’m struggling, and struggling HARD to admit that he may never have a normal life ~ live as a regular person, free from anxiety, free from frustration and despair.

I had to have a talk with JM the other day, and had to admit it to her. She’s been away at college these last two years. More absent this last year when WK’s anxiety and OCD has progressively gone from bad to worse. She doesn’t know how to deal with it. Before it was just a little brother being bratty.

She had asked him what he wanted for his birthday. When he gave her a detailed description of what he wanted, she balked. She had wanted to get him something useful, maybe take him shopping for clothes or help him pick out some shoes.

He wanted a model airplane. I can only guess she felt that wasn’t age appropriate. He got upset, very upset. And it only went down hill from there.

The two of them have always had a sort of love/hate relationship. He wanted to be independent, she wanted to be the ‘mommy.’ He didn’t like her telling him what to do, she wanted to help him stay out of trouble. (They are four years apart in age.)

Physically he is 16, intellectually he could be closer to 20. Socially and emotionally he may be more like 12. He has a highly developed sense of Fair and Unfair. WK thinks practically everything about his sister is Unfair.

One of the difficulties we have with WK is that he doesn’t talk to us or his doctors about what’s going on in his head. What he thinks, what he feels, what’s his take on what’s happening to him.

He finally broke down recently and told me that the main reason he doesn’t get along with his sister is that he resents JM because she doesn’t have to live like he does. School, friends, life is so much easier for her. He feels like Hubs and I never tell her ‘no,’ that she gets anything she wants, that she has no disappointments, no failures.

It’s not true, but his ability to correctly analyze events doesn’t always work properly either.

This experiment in homeschooling, online courses, isn’t going well. He can do the work, he’s smart enough to do the work, but the anxiety, the panic attached ~ and here is where I just don’t understand why ~ is enough to completely shut him down.

I don’t know if he’ll be able to get caught up in time to start back to public school with his peers in the fall. It may not happen. I don’t know if I can continue working like I have been, or if Hubs can for that matter. I have a couple months to figure something out.

In 1987, Emily Kingsley wrote an essay describing what it was like having a child with a disability. She talks about the anticipation parents have preparing for the birth of their child, only to discover that what they thought was going to happen, doesn’t.

Like thinking you are going on a trip to Italy, only to land in Holland. The difference wasn’t terrible, only different. Sometimes I feel like I’ve landed on the moon.

I don’t have the words to say how much I love this boy, how much I wish his life were different. That he was different, that I knew what to do to help him. But then I have to wonder how else he would be if he hadn’t had to fight these demons.

Would he be as funny, as loving, as amazingly smart. Would he be as compassionate, as caring. Would he be the kind of kid who rescues kittens, enjoys cooking, and tells me all the time that he loves me.

What do I wish for? What do you give up to have what you think you really want? Should I pray for change or acceptance?

For today, he is just going to be 16. I won’t nag him about his homework, we’ll go out to eat and I’ll bake him a cake. He’ll get some presents and hopefully have a fun day.

Tomorrow… I don’t know what will happen tomorrow.

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