When My Wheelchair Gets Damaged Beyond RepairUsually, a situation like this would leave me in a very dark place. A few weeks ago, we were in a car accident, and I thank God every day that...Reactions0reactionsComments0 comments
Financial Independence, The Food EditionLet’s talk about financial independence. As you know from my first article here, financial freedom and independence are so hard. With Supplemental Security Income (SSI) limits, I can feel trapped...Reactions0reactionsComments0 comments
Nighttime Tips and TricksBased on my friend Allie’s article about her morning routine, I thought I'd offer my nighttime routine. Here are some nightly tips and tricks that really help me. I would...Reactions0reactionsComments0 comments
My Process For A New WheelchairHello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't afford a van, (why are they so ridiculously...Reactions0reactionsComments0 comments
The Advocacy Issues That Matter To MeI feel like I've mentioned my advocacy here and there, and I'm sure we all know the reason behind why it's important; for us disabled people to have equal rights...Reactions0reactionsComments0 comments
Becoming Okay With My AnxietyIn middle school, I gained anxiety and was in pure denial, especially when it came to getting help, I was in that “fitting in” phase in middle school. SMA has...Reactions0reactionsComments0 comments
What Does Independence Look Like?My friends Sawsan and James were in the Easterseals Disability Film Challenge. The film is called Out of Reach. In it, James talks about independence, “I thought I would be...Reactions0reactionsComments0 comments
Thriving With SMAIf you live with SMA, then you know the ‘waiting for the other shoe to drop’ mentality. I lived there for a long time, and sometimes, I am honestly still...Reactions0reactionsComments0 comments
My Journey With EvrysdiHi friends! Today I wanted to write about my journey with Evrysdi. If you or a loved one are making the decision to get on it, but aren't sure what's...Reactions0reactionsComments0 comments
Unique Accessible Seating During a Fun Weekend TripHello everyone! Hope all is well! Today, I wanted to talk about a fun and interesting accessible seating option. So my family and I love the band Daughtry, and we...Reactions0reactionsComments0 comments
A Sense of BelongingI can't remember if I've mentioned this before but for most of my life, I hid my SMA as much as possible when I was younger. When we’re young, we...Reactions0reactionsComments0 comments
The Bully In My MindFor me, personally, the smallest things are the scariest. I know that you just have to do it, as they say, but I guess the not knowing is the worst...Reactions0reactionsComments4 comments
Getting Out Of My HeadI know that I am not alone in this feeling. We ‘SMAers’ are very observant wallflowers. Meaning that we see everything. For me, this has helped me to survive when...Reactions0reactionsComments2 comments
"Most Likely Not To…" The Musical!On February 29th, 2024, The Times Center officially hosted the first-ever SMA musical in collaboration with SMA My Way and Genentech! I wanted to write about my experience as an...Reactions0reactionsComments0 comments
If I Knew Then What I Know NowWhen I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to put a positive (but also realistic) spin on...Reactions0reactionsComments4 comments
How Alexa Became One of My Disability Must-HavesI was talking to my Public Partnerships consultant a few weeks ago (PP is a program where I live where someone you love can get paid to help take care...Reactions0reactionsComments2 comments
Becoming MeAlthough we are only a few months into the year, as I write this, I've learned so much. About a week ago, I decided to get rid of, by unsubscribing...Reactions0reactionsComments0 comments
Worst Case Scenario: a Cold*This article was inspired by Balancing Life When You Are Ill by Michaela Hollywood* As of writing this, I was sick this past Thursday and then finally felt better today...Reactions0reactionsComments1 comments
OverwhelmedLast year, to make a long story short, I had a bunch of GI issues. The GI team decided to give me a peg tube. I want to be friends...Reactions0reactionsComments2 comments
New Year - New Me?I never liked the phrase "new year, new me." It made me feel like everything I did last year was thrown away, and none of it mattered. What's wrong with...Reactions0reactionsComments0 comments