Inspiring stories from those living with SMA, ranging from topics of accessibility, dating, individuality, work and adulting.

When I hear the word “travel,” my brain neurons fire with excitement, but they also fire with anxiety. Traveling with a child who has SMA and needs medical equipment can be grueling. Over the years, I’ve learned it doesn’t have to be taxing, if I’m prepared. My son Jack loves adventure, seeing new cities, and trying new foods. As long as I follow my pre-travel rituals, then I have the pleasure of seeing Jack see the world.

I’ve laminated our checklist to reuse time and again. Jack’s Nana helps me choose and pack his outfits. Jack likes being stylish. I am in charge of packing all of Jack’s favorite snacks for road trips and plane rides. Finding a good insulated lunch box and ice packs to store snacks is also helpful. Jack’s Papa is the best roadie, always ready to load the luggage into our vehicle. Lastly, Jack is in charge of packing his favorite toys and his tablet. I always have the chargers.

Whether I’m traveling by plane or car, that helps me determine how I’m going to pack. What has been most useful for me is hardshell luggage. I think the hardshell makes me feel like anything inside is less likely to get damaged by airline handling. If I’m traveling in our own vehicle, I often pack more than I need in case we want or need to extend our trip. On road trips, I also love bringing large tote bags on wheels. So I can just roll all our necessities around; it’s brilliant!

This is all to say that traveling can have its challenges too. Our biggest issues have been flight delays. I have regretted booking the last flight out, because that’s it, no options. So if we are stuck on an unanticipated long layover, Jack can get grouchy or have pain from sitting too long. We have been so lucky that Jack’s wheelchair has not had any major damage from airline travel, but we have had some of our wheelchair accessories lost. Some that are important to Jack, like his cup holder. Jack loves having his water bottle close by. I always ask the airline staff if we can board first to guarantee I can comfortably and safely transfer Jack to his seat. I also need an extra minute to ensure Jack’s wheelchair is folded correctly, all the pieces are tight and no parts are loose. It has been really helpful to request pre-boarding and notify the airline that we’re traveling with a wheelchair when booking the flight. It makes the day of traveling so much easier.

When I finished my first novel, I knew better than to hope for success. The publishing industry is competitive, especially for marginalized authors who write about their lived experiences. Few writers strike gold on their first completed project.

If you'd asked me at the time, I would have said I was prepared for failure. And I was! But that didn't stop the rejection from hurting. I love everything I write, but that book was especially important to me, as it featured the disability representation I'd wanted since childhood. It was the culmination of a decade of striving — and it went nowhere.

The therapist in me recognizes the shift in mindset as the result of failure. If I hadn't abandoned my book, I wouldn't have questioned my purpose as a writer. I wouldn't have realized that, while writing is difficult, especially in a world that often devalues disabled perspectives, it is also worth it.

I wouldn't have rededicated myself to my craft or written a book that blew my previous one out of the water. Would it have been easier without the failure of rejection? Absolutely. But would it have been as meaningful? Probably not. And that — that's where the magic is.

Lots of people know me as a protective mother. It's not a bad thing. Sometimes, I have to be the mama bear to get things done for my child who lives with medically complex needs. It wasn't until my son Jack turned 6 years old that I realized he could really fend for himself and express his own needs. As his mom, I want to empower him and encourage independence.

Today, Jack is 7 years old and lives with SMA Type 1, as well as mild autism disorder. The combination of SMA and autism didn't allow him to have a voice until he was about 4 years old. Jack has worked so hard to build his voice through help from speech therapy, his educational environment, and our family.

One major takeaway from our conversations is that Jack needs to establish independence early on, so he can be even stronger when he reaches adulthood. So, with the help of our home support system, we are teaching Jack about the power he holds over his own life.

It was about a year ago when my eyes really opened. We were at the hospital, and Jack was being prepped to start an IV infusion. The nurse was looking for a vein on his right arm. Then Jack suddenly told the nurse that the better arm was the left one and to please not use the loud thing. He meant the jtip, which is a needle-free anesthetic and is very loud. Jack does not like the sound of it and sternly voiced his own concerns. It made me so proud to see that he could advocate for himself.

At school, Jack can get emotionally and physically fatigued from the busy school day. He knows that he can simply raise his hand to call his teacher and ask for a break. Often, he needs mental breaks. He's free to roll to the sensory room for a few moments to refresh himself or to have a snack. At home, he will ask for help when he can't reach a toy and is very good at communicating exactly what he wants to eat.

I watch my son live with SMA, and I see it's a daily struggle to get all his basic needs met. He needs help with coughing, showering, toileting, changing his clothes, taking his medications, preparing food, and the list goes on. Before Jack had a voice, we used to do things as a routine, saying it's time to do this or time to do that. I have learned that it's better to encourage him to tell us when he needs something. As a protective mom, I used to think I knew Jack better than he knew himself. The truth is that he really deserves more credit. That's something I learned from my many opportunities engaging with other members of the SMA community.

When I perform at speaking engagements, people often ask what my parents did to set me up for success in life. The answer is simple: from a young age, I was encouraged to be a self-advocate. That's a fancy way of saying they taught me early on how to voice my needs and stick up for myself.

My parents faced the daunting task of teaching their children skills of self-advocacy and responsibility. After all, their main goal of parenting is to set up their kids with the tools, resources, and values for a lifetime of satisfaction and success.

As a young child, I was encouraged to go out and play with the other children in our neighborhood, a process that involved introducing myself and showing my new friends how we could play our favorite games and include my wheelchair in the fun. My parents let me get dirty, make mistakes, and ultimately get into trouble (occasionally!) just like every other kid. In this way, I learned how to help kids understand my disability and realize I was no different than them.

In school, my parents and teachers included me as an equal partner in planning my disability accommodations. They urged me to voice my desires during Individualized Education Program (IEP) meetings. As long as those desires aligned with safety and common sense, the adults deferred to my opinion when crafting my accommodation plan. For example, in 4th grade, when I decided I no longer wanted a school-supplied personal attendant all day, I was responsible for showing the administrators how and why my friends were better options to be my helpers in class. This taught me how to argue, reason, and make smart decisions for myself.

As a teenager, there were times when I hated the "extra" responsibilities. My parents taught me how to make medical appointments, keep a schedule for my life, talk to insurance representatives, and more. I remember having big arguments with my parents when it was time to schedule an appointment, but I just wanted to be playing video games.

Looking back now, as a 30-year-old, I so appreciate my parents for giving me the skills and confidence to manage my life and care. I felt a strong sense of personal autonomy well before many of my nondisabled friends, and I largely attribute that to how my parents raised me. The skills and tendencies I developed throughout childhood turned out to be incredibly useful in my adult life (and attractive to partners as an added bonus). Today, I feel completely comfortable managing all the myriad responsibilities of adulthood, especially factors related to having SMA. Thanks, Mom and Dad!