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.
One thought on “What We All Are”
You're my hero.