The hardest thing

I know that this is going to make me sound like a royal jerk, but I don’t like 6 year old little girls, at all.  Whenever possible, I try to block the thought of their very existence out of my mind. It won’t always be like this, two years ago I hated 4 year old little girls and next year I think that it will be the 7 year olds that I will grow to resent. It makes the loss of what Rett Syndrome has taken from Claire so much more real when I see little girls that are the same age as her. When it is just me and Claire or even Chloe, Claire is exactly who she is and that is just fine. It is all about context. Next to Chloe she is a patient and loving big sister. At therapy she is the strongest fighter ever and at kid quest she is just one of the club. Put her next to a ‘typical’ six year old and I start to fall apart. I forget how funny, silly, smart, friendly (you get it, I won’t go on) little girls are. It reminds me just how normal Claire is and that if her body would just let her, she would say similar witty things as well. Needless to say, this has been a challenge as I know that one of the things that Claire wants most, is to be with other typical little girls and to be accepted as one of them. This year has been great. She spends about 35% of her time at school in the mainstream setting and on Sundays she has a wonderful set of helpers that work with her in the classroom with the 1st graders at church. This has allowed Claire to enjoy the company of her friends without making me participate in it too much. A while back a friend of mine posted this. She discussed being both a 6 year old and a grown up and why we have to be both. But a big part of me just can’t, or rather, hasn’t. I struggle just to keep some sort of identity aside from exhausted wife and mother, to have to think like a 6 year old too, so I most often let other people do that stuff.  They are better at it and I have convinced myself that it is just better to go with every one’s strengths, it’s easier that way. Today, that wasn’t so much an option. I knew that for one reason or another that there wouldn’t be a helper for Claire at church today. I figured that I would take her to watch the service and when she got bored we could sit in the coffee shop and read. I took Chloe to her class while Jared unloaded Claire’s chair and got her rolling. When I met up with them I had two nagging thoughts in the back of my head. 1. Ask Claire if she would rather go to Sunday school or big church. 2. When faced with a fearful situation lean in the direction of what seems harder (something a friend encouraged me to do a while back when life seemed it was sliding sideways). You see, I was under the delusion that she wouldn’t want me to go with her to Sunday school as there has been a long pattern of her enjoying her independence apart from me. So I thought it was a safe bet. If I could get her to choose to go to big church with me, then I wouldn’t have to deal with the guilt of running from my fear. Too bad that she was unavoidably clear, she wanted to go be with the kids. So I took a big gulp and we turned around to walk back to the building full of giggling and wonderful little girls who were certainly going to do nothing other than rub their wonderfulness right in my face. Sure enough they did. As we entered the room immediately I heard a little girls voice say, “hi Claire!” It was our old neighbor that we hadn’t seen in almost a year. Quickly it was time for singing and dancing so we made our way over to the large group of children (maybe it was only10-20 but it felt like 100) and I got Claire out of her wheels so that we could join is as best as I could figure out. Claire absolutely loved it. She lit up brighter than the biggest Christmas tree, it was breath taking. When it was time to sit down for the story I noticed that another friend, a little girl from Claire’s school that was at her birthday party had come in a little late and chose to stand right next to us for the songs. She moved in a little for stories. Our old neighbor friend came and sat on the other side and held Claire’s hand. There were two people that were dressed up in absolutely ridiculous elf outfits that were teaching the lesson. As they shared the story Claire laughed out loud a few different times along with the other children. My heart dissolves at the sound of her pure laugh. It is the closest thing to her voice aside from her screams when she is upset. She gave me the signal to leave the room so we did and she had a dystonic episode, that she had the peace of mind to let me know that it was coming and she wanted to be alone is another thing that just blows me away. As soon as she recovered and could hold her head up she wanted to go back. Things were wrapping up, we helped the little girl that sat next to us with the stapler, ate a few gold fish snacks, said good bye and went to get Chloe. As we walked out, the guy that told the story, who was still dressed like an elf, stopped to say how much he loved it each and every time he heard Claire laugh. It was a genuine nice thing that he said but it was like a bomb in my head, Claire is a very special little girl. She touches people in a really special way. Her laugh says a lot more than most normal little girl laughs. She contributes to the group, she encourages people, they love to see her come alive just like I do. Funny because the lesson was on generosity and it was I who had wanted to keep Claire all to myself. So all that to say, that was hard, really, really hard, it was wonderful and most importantly not just for me but for others. Maybe someday I will remember that it isn’t just about what I do for Claire but what Claire does for the world.

1 Tim 6:18 They are to do good, to be rich in good works, to be generous and ready to share,

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