We have so many days that are great. We try to live each day as positively as we can. We are a work in progress but we are trying to find balance in our lives, caring for Maggie, enjoying the little things and also pursuing our lives individually. We also try to get involved with as many events as possible, bringing awareness, fundraising and supporting.
Looking through pictures is fun but can also be emotional. When trying to find ways to bring awareness, we are reminded of what a roller coaster our lives really are. This past year, as most of you know, Maggie got a cold and her symptoms avalanched from there. The day before she got sick, we were supporting Girl Power 2 Cure and Sparkle Athletic raising money doing the Ragnar race. We supported by walking our own Virtual 5K around our neighborhood. It was the best day. Our first family walk with all four of us. Maggie was skipping, running, laughing and just having the best time. We had the best day. The next day our lives fully changed. She woke up sick and hasn’t been the same since. But this day was amazing. I look forward to more days like this again. It goes to show you, you never know what each day will bring. Live life to the fullest. #rettawareness #girlpower2cure #sparkleathletic
One of the first symptoms of Rett Syndrome we noticed was the hand wringing. It started ever so slightly in her right hand before we even knew anything was wrong. She just started clenching it ever so slightly. A doctor told us that as long as she wasn’t doing it in her sleep, it shouldn’t be considered involuntary. As in there’s no reason to think there’s something wrong neurologically. Nothing to worry about.
I remember the first time she did it in her sleep.
Since then she’s been in 2-3 hours of occupational therapy each and every day. Even so, a year ago she could pick up a cup by herself, using both hands. 6 months ago, she could only hold it with her left hand and the only time she felt grounded was when she would hold her two favorite toys in that hand. Today, she can’t even hold those.
Her hands are in constant motion. Her right hand pulls against itself with such friction that she’s given herself skin blisters. Her left hand has started clenching now as well. We fear soon she will lose all use of that hand as well.
Her neurologist believes this is just how Rett Syndrome progresses.
We had thought there was a regression phase and then things would level off. For Maggie, it seems that we are learning that Rett Syndrome continues to progress little by little. We hadn’t even noticed that she was losing her hand use, it moved so slowly, until the day it was too difficult for her to use her hands anymore.
We are recognizing that all the hard work we put in to make sure she regains her skills and retains the ones she has been able to keep isn’t fighting off the monster quite so well. But that doesn’t mean we can stop fighting to maintain her skill level. It actually means we have to fight even harder. We have to fight harder not just in her therapies, but also in our tireless devotion to finding a cure.
A cure is scientifically possible so we aim to make sure that no parents have to watch their daughters go through this again.