Cotton, was not a child that struggled. His nature is (for the most part) calm, and passive. Rev, has struggled for a long time. It seems like he is always in a state of frustration. Cotton really doesn't seem to mind that he isn't able to speak, he makes his point known, but he is infinitely patient with his audience. Rev, can speak, he CAN say anything, but the words don't come when he needs them, and he really NEEDS them. He cannot handle his body when the answer is no. He struggles.
You would think that doing this the second time around would be easier. That the grief period would be shorter. It's not, I struggle.
There is less shock, and that is helpful, but there still is a layer of confusion. It seems like a cosmic joke, or more like cosmic cruelty. But, you have no choice in such matters, you wake up, you get out of bed, you comb your hair, take your kids to school, clean your house, and think. You think of ways to help, you make visual schedules, and choice boards, you sew weighted bags to throw when one is too angry to control ones body. You set up "calming corners," and brush your child, you give them joint compressions. You have many tools to help them find the words, and they help, but still it is a struggle.
I wanted this road to acceptance to be more private. I truly believed that Rev was going to "snap out of this." Part of me still secretly believes this. But, he turns four next week. Four. My time for denial (although I have had him in all the therapies for years) is coming to an end. Our struggle has just begun, and I am so tired. I wanted to get through the grief the second time around quickly. I wanted it over with, done. It doesn't work like that, and we live in a world where no one has patience for anyone struggling, much less struggling twice. So, I'll bring it here in my not so private way, because it is struggling to get out.
I don't think the grief ever really ends (for me). It kind of waxes and wanes, and we still have a good life, but it's there. I talked to a mom of a child yesterday who is completely non-verbal and not toilet-trained at 10. It was such a relief to talk to her. She said a friend was complaining to her that she couldn't get her manicure and her pedicure scheduled at the same time. And we just laughed because we are both trying to keep our kids from eating their own poop, but you can't vent about that to most other people. I don't really like the "Welcome to Holland" essay, but I do feel that we live in a different country. And I hope your grief goes by faster this time, if it's possible. I am so impressed by Cotton and everything he's doing, but I know two is so much harder than one! Got to go handle a crisis, but I am thinking of you.
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