I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.
I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.
Check out the latest episode of “Dose of DeAnn” here. This one is slightly different from my usual videos, as I do a book review here. For anyone who has followed SMA News Today for a while, you know that we’re pretty big fans of author and nonprofit executive Shane Burcaw. His latest book, titled “Strangers Assume my Girlfriend is my Nurse,” came out recently, and I had a chance to check it out.
I talk about some of the stories that stuck out to me, and I discuss my biggest takeaways from this book. This memoir explores Shane’s relationship with his now fiancé Hannah Aylward, and it offers some great insight into inter-abled relationships.
Have you read this book yet? If so, I’d love to hear your thoughts as well. We have a book club discussion going on here in the forums, and I’d love for you to join. Thanks for watching!
Great video! While I still prefer physical books, digital versions do make things significantly easier. I like reading on my phone when I’m in the car or waiting for doctor appointments, and I read a lot on my computer.
Author
Posts
Viewing 1 reply thread
You must be logged in to reply to this topic.
FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
Talk to your doctor to determine if you or your child is fit to travel.
Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.
I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.
We use cookies to ensure that we give you the best experience on our website. If you continue to use this site we will assume that you are happy with it.OkRead more