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 →
I love my IPhone but are you like me and your photos now live online rather than on your walls? This one though I’m going to print. It shows how lucky I am. It’s a photo taken when Bridget was bored at a restaurant and so that I could finish my pinot meal her sister took her shopping. Her sister let her pick out something and then showed her how to pay.
This photo shows why grandmas are always loved more than moms. This photo shows joy that we all should feel and carry with us. Continue reading →
All kids have milestones that are not in the what to expect (not!) handbook. New moms and dads dream about the first “momma”, the first fish caught and the first time their screaming newborn sleeps through the night.
There are however other milestones they are not aware of and some even I never expected. Continue reading →
Today I was going to participate in the Finish The Sentence Prompt hosted by the fabulous Kristi of Finding Ninee and her friends Mardra and Kenya. Instead I am sitting here with goosebumps, sick to my stomach.
This past weekend was Graduation weekend on the Cape. I love attending graduation and seeing children that I’ve known longer than they’ve been alive in their cap and gowns. I burst with pride alongside their parents and loved ones, knowing how hard they worked for this small piece of parchment. I take pride in knowing my signature is on their their diploma. That I had a very small hand in helping them succeed.
You know when you think something is working and by all appearances it is, then you let someone else test your “thing” and it malfunctions? You have to go back to the drawing board and you are frustrated because you were so sure that your “thing” was working perfectly.
Bridget has this super cool friend, Charlie. Charlie is awesome. He walks her to class every day. He watches out for her at parties. Charlie is the boy that if Bridget was a typical second-grader I would be joking with his mom that I hope he stays sweet and takes her to prom one day. Continue reading →
Today’s FTSF Prompt is to show a photo and tell the story behind. it. I’m going to do this a little backwards today. Instead I am going to tell you about the photo, about why these photos are so important and then show you them. Continue reading →
Today I’m reposting a blog from last year. I think it is important to remember there are many faces of Autism….and most of them don’t have it. The parents and siblings (and everyone else) who live with Autism never seem to be recognized. Yet without their support, the person with Autism would have so many more struggles to be included.
Originally posted on 4/3/17
A parent walks into the store, dragging her child kicking and screaming as other shoppers look on. A sibling walks into the store and says, “next time I will babysit so you can try to get the shopping done”.
A parent answers, “What time is it” for the 500th time with patience that is waning. A sibling tries to redirect the looping by distracting them with Disney Jr.
A parent tells her other child that they cannot attend the school play, because their sibling cannot handle the lights and sounds. A sibling whispers they understand while their heart is breaking. Continue reading →