It started out as pretty epic, considering it was a Monday. Coffee with a new friend, strolling on the cliffs soaking up the sunshine, Chloe skipping and holding my hand, I even got to vacuum, something I get really excited about. Jared was coming home late so I enjoyed dinner and stories with the girls. It was all very smooth sailing. Jared called to say he was almost home and would stop for ice cream. Then I heard Claire, I ran in. She was purple and choking on her vomit, I assume that she had had a seizure. Just as we got her cleaned up, she had another one, just as I had suspected, it was a real deal seizure, so we brought her out to the couch. After a few minutes she had another one and that is when we did it. We pulled the diastat out and actually gave it to her. Immediately she was better, she even laughed in a genuine high sort of a way. It felt weird to give her such an intense drug at home with no medical supervision. At school if they give diastat to anyone they call 911, so I called the advice nurse. I knew they would be of little help but I just wanted to hear from somebody that we did the right thing. The nurse was clueless and had the on call doctor call me. This was a doctor we had never met so they asked a few questions, starting with, does your child have a seizure disorder? I responded that she had rett syndrome. Before I could continue on to say that she was medicated for focal seizures the doctor gasped, "oh I am so sorry!" I wish that I had responded something along the lines of "I am sorry that you missed the class on things never to say to a child's parents." But I just pretended not to hear it and went on about her history. The doc was not that helpful, she had the super good idea of contacting the nuero the next day, something I had already planned on. The next morning Claire woke up bright eyed and ready to go. In fact, she had an incredible week. I however have had the worst time shaking what the doctor said. Part of me thinks why on Earth would anyone be sorry about Claire, but I know the answer to that. She's different, what she has to go through is hard. As much as I would absolutely love for the whole rett thing to go away and for her to be able to run free, I don't want to go through life thinking about how bad her life is, because I think a lot of the time she likes her life, shouldn't I? I don't want people to be sorry that she has rett syndrome, I want people to see her for the amazing little girl that she is. Sure she has her challenges, they are obvious. But really, don't we all? I think of a conversation I had with a friend a few weeks back. When I told her how great she looked she replied, "cancer is on the inside, you can't see it." What we deal with is out in plain sight for everyone to see, but that doesn't mean that we need pity. Regardless of if the problem is on the inside or the outside, don't we all just want to be treated with kindness, respect and to be accepted for all of who we are, the good and the bad? Sorry that this is a bit of a rant, I am just getting to a place of acceptance I suppose. I don't want to live the worlds largest pity party, I want to live the richest life possible. As it turns out, my daughter's body doesn't work well, but I really don't see that affecting the situation one way or the other. I will laugh and cry and be alive through it, just like we all are.
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,
1 Tim 6:18 They are to do good, to be rich in good works, to be generous and ready to share,
Maren and Erica. So I was over the top delighted to get to make pizza from scratch two weekends in a row for a few new friends.
After we ate and watched both the Thanksgiving and Christmas Charlie Brown movies, we put up our tree . There is just something so special about watching children look at a tree light up for the first time, one of those things that just can't be taken for granted.
Once the girls were down Captain Awesome and I had our real feast of cheese, salami, olives and fresh bread while watching a true Christmas classic.
We had a lot of fun over the holiday weekend. You can see that we took our black Friday shopping very seriously.
Eventually we made it down to work some of that food off. Being that black Friday is the official day that rett stole Claire's hand function it has been a sad day for me the past few years. But this year she really shined and showed off just how little she needs those hands. Sure she would love to use them, but Claire reassured us all that even without the ability to feed herself, she is still one very awesome little girl in ways too many to count.