I recognize that without living through the myriad of symptoms that Rett causes, it’s hard to really picture what these symptoms are like. Not being able to use your hands, for example, does not seem as horribly disabling as it is. Continue Reading
Spinning out of control
A very common statement said to me is, “I don’t know how you do it”. I usually don’t know how to respond other than smile and change the subject. Truth is, there are days that life is spinning out of Continue Reading
Diagnosis: uncertainty
We have all known life is uncertain, but 2020 has really handed us uncertainty on a silver platter. If anything Covid has given the world a glimpse into our lives. The entire world is contemplating medical uncertainty, a range of Continue Reading
What would you ask for?
We have been told numerous times, “We are so close to a cure.We are so close to treatment for Rett.” We have had so much hope for a cure, but even a treatment, something to abate one of her symptoms Continue Reading
Positive moments
Everyday I try to focus on the positive. I thought I would share some of my positivity with you. Here’s 10 moments during this pandemic that have made me realize, life isn’t so bad. (scroll down for blog) Top 10 Continue Reading
The Never Normal New Normal
“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.” – William Arthur Ward We’re excited for a time when we can all get through this and we can get back to normal. Continue Reading
Surviving Corona
Life was finally moving in a smooth direction. In late February, thanks to new dosing of medications, her seizures were back to being under control, her breathing issues went from a constant struggle to a regular but not constant problem Continue Reading
We are not alone….
We have a special treat. Sara Polon reached out to us a few years ago and has been consistently supporting us by raising awareness for Rett Syndrome, fundraising through her business, Soupergirl; and sending us soup to lift our spirits Continue Reading
Off on a solo adventure
I have mixed emotions when I travel away from Jenny, Maggie and Gray. On one hand, things are hard at home and it’s a struggle to stay on top of everything when both of us are home, making me feeling Continue Reading
Let’s play ball!
Summer has begun for everyone, at least in our hemisphere. On social media I have seen families sending their kids off to camps, going on family trips and also just swimming by the pool. It’s been a tough few months Continue Reading
