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
Should we go to the ER?
I’m not sad. I’m angry with Rett Syndrome. We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; Continue Reading
The Long Weekend
Maggie is a full time job. Technically she’s a full time job for 3 people. And even then, it’s a lot. This weekend, Jenny took Grayden out of town for his spring break. I can only assume they’ve been busy Continue Reading
