I don’t usually do New Year’s Resolutions. To me it is setting yourself up for failure. Until I read my friend’s first ever blog post. This friend, a former ESP for Bridget, has been present in my life for 6 years. We’ve run a frozen Muderella together and remained Friends. She is no longer Bridget’s ESP and yet here we are, friends. We never see one another, yet friendship remains. Then this month she began her first blog.
Her first post (When you are not even sure who you are anymore) resonated with me, and made me rethink my anti-Resolution stance. I know who I am. While reading her post I had an AHA moment. I realized that while I know who I am, I am not taking care of me. Therefore…. Continue reading →
I have a running joke with my friends: Let’s run away and buy a private Island. On it we will build our true village. We will be surrounded by our “family” that gets us. No explanation needed. Just comfort and company. Continue reading →
Funny how we spend the last weekend of December remembering how we spent last year, and the first week in January planning (or resolving) how to spend our next year. How to do better, how to be better and how to live better. Continue reading →
This is the season of celebration. Our children are looking forward to opening presents. They’ve been on school vacation, enjoying a break in the routine. For some of us it’s also the season of judgement and chaos. Continue reading →
Earlier this month I had the opportunity to attend the Global GenesRARE Patient Advocacy Summit. It was a little surreal, I am used to introducing PACS1 as a “rare” syndrome and at this Summit we all were rare. We all had similar journeys and stories. From misdiagnosis to undiagnosed for years. The breakout sessions were beyond informative and I will add all that I learned to my Bridget toolbox.
Yet it was the Keynote Speaker Rachel Callander‘s words that have stayed with me. “What’s your child’s superpower?”. It reminded me of a blog post I had written in 2013. This time of year, more than any, I need that reminder. Continue reading →
Last week I purchased your magazine for the first time in over 30 years. Let me offer my congratulations to your continued success. I am also in a kind of shock that I purchased a magazine for my teen that my mom purchased for me. It seems that as much as the world has changed since my teenage years the more it has stayed the same within teen stardom land.
It is because the world has indeed changed that I writing to you. I bought the current issue because my teen is currently obsessed with all things Sabrina Carpenter. This photo is how I won best mom of the day award. Continue reading →