This morning Claire and I dropped Chloe off at her preschool and headed over to…Target. It’s a pretty big deal as it went from being a 30 minute drive each way to being right on the way from Chloe’s school to the ocean. Claire beamed and I thought to myself how different things are from just a few short weeks ago. I had even started to write a blog post in my head about how much I love drugs. I was going to explain why I was so hesitant to start her on them but once we did the positive change it has made. Last weekend she went to the aquarium with no episodes and yesterday was the last day of summer school with no episodes or seizures, the drugs were working! I am lexapro’s new biggest fan. No longer would I have to fear Claire getting too happy, lest she twitch and stop breathing, with the medication, she was happy and herself without the horrible stuff. As I thought about this I looked into my review to see that her hands had stopped, her neck was bent back and her face taught, it was coming. First it was the dystonia and then it was a small focal seizure. I cringe as I say small because she still turned purple and before I could pull over she had gasped for air and started to foam at the mouth. Needless to say, I have decided that I would rather blog about how mad I am. I am really, really mad. I hate this! I just want to enjoy Claire and I can’t. Sure she recovered quickly and still wanted to go shopping. She picked out a new hello kitty outfit but I had to stop and do deep breathing with her every minute or two as we shopped to ensure that she didn’t all out stop breathing again. We went down to the cliffs to watch the waves and I couldn’t laugh at the funny and witty things that she said because they weren’t out loud. We went to Verve for some coffee and a treat and as much as I do truly enjoy time with Claire, I imagine how fun it would be to watch her feed herself, how she might fidget if she could. We came home and she loved her bath. I told her that she could have a special strawberry body scrub because her sister wasn’t home but the truth is we were bathing without Chloe because Claire needed to be scrubbed, to find her body, to know where all her muscles were. I let her pick my fancy lotion and gave her a special massage which is really code for checking range of motion and I absolutely hate that I have to do this. Of course she knows all this too. Claire is a smart cookie and knows the difference between a gentle rub and when I am trying to get her to relax into her body. I truly believe that she might even hate that this whole charade goes on more than I do. Sure she handles it better. She grins and laughs her with her dark sense of humor whenever I screw something up. She is aware that for most, summer is fun and not just a series of appointments and therapy. Yet she plays along, knowing that regardless of what other people are up to, this is what we do and she does her best to enjoy it all for what it is worth. I do enjoy it, if you can enjoy something while simultaneously being really mad about the whole thing. I just imagine how much more amazing she might be if she could just use her body a little more and today I couldn’t get past that thought. Maybe I will get some good rest tonight and in the morning I will sail right on by the anger and settle right into acceptance, I sure hope that I do.
7 thoughts on “Fading to anger”
Love you so much!!!
yes I am f……mad also. And I totally get it being mad and enjoying if that is possible. I love you Colleen and I love Claire.
Hun…… i just have to tell you how much it made think reading this post about what an amazing mother you are……. xxx
Thank you! I love you and cristia Isabel too and wish that you weren't facing the hard stuff that you have either.
Thank you Janie, that means a lot to me.
I am pleased it does Colleen, next time i am out shopping i am gonna go body scrub crazy & you know what i will be thinking… this is what Colleen does……