The Frustration of "Inaccessible" Accessibility“Come visit this awesome new restaurant,” my friends begged me. “It’s got great Yelp reviews and we’ve wanted to visit it.” “This club has the best drinks and the friendly...Reactions0reactionsComments2 comments
How I Met MikeOne of the great things about little kids is that they have no filter. For example, when adults see someone with a physical disability, they usually politely avert their eyes...Reactions0reactionsComments1 comments
How Expensive Is That Minivan?I want to talk about the extra expenses for anyone who deals with a physical disability. Dealing with the physical aspects of spinal muscular atrophy sometimes feels like a small...Reactions0reactionsComments4 comments
Remembering the First DaysAs you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day and the birth of each of our children...Reactions0reactionsComments1 comments
Finding the Right CaregiversLiving with a disability, I like to consider a full-contact sport. It requires your mind, body, and soul to be as healthy as possible. And in most cases, it requires...Reactions0reactionsComments0 comments
"When I’m an Adult, I Will Walk"Do ducks swim in their own pee? Are babies even real? Or just pretend? When I’m an adult, I will walk. This was all within 5 minutes of pulling into...Reactions0reactionsComments4 comments
SMA Awareness or Pride?Everyone in the SMA community knows that August is our month... well, everyone except for me. I’m ashamed to admit I did not know about SMA Awareness/Pride month until this...Reactions0reactionsComments4 comments
Adapting and Fitting InWe all want to fit in. What does that look like? Who do we want to be? I believe that everyone deals with this feeling of being left out at...Reactions0reactionsComments2 comments
My Life with SMAIt all started here Mom was wondering why a bubbly little girl who can already speak at 10 months old cannot crawl but managed to sit. She skipped a few...Reactions0reactionsComments1 comments
Why I Love and Hate My G-Tube“Steve Stoma is the worst roommate.” Yes, I named my g-tube and that’s what I tell all doctors and people who have no idea what I’m talking about or referring...Reactions0reactionsComments0 comments
Talking to an Employer About SMATalking to an employer about spinal muscular atrophy (SMA) can be scary. But many people find that open communication with their employer improves their work life. For example, your employer...Reactions0reactionsComments0 comments
The Journey BeginsI am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved one diagnosed with a disease, it affects the...Reactions0reactionsComments0 comments
Coping With Your Child’s SMA DiagnosisA child’s diagnosis of spinal muscular atrophy (SMA) can be a life-changing event for parents. Parents say they feel a range of emotions while waiting for a diagnosis and after...Reactions0reactionsComments1 comments
