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

I first discovered my passion for music when I was singing songs on the radio at two years old. A few years later, I enrolled in piano lessons, and I thought it was the coolest thing to be able to create music myself. My parents felt that I had a unique ability that many people didn't have.

When I started creating my own songs with my own lyrics, music allowed me to express myself however I wanted to, and that was invaluable. Music would allow people to see me for who I really was, and it became a huge part of my identity going forward. I knew that I didn't feel like myself if I wasn't creating or performing music, so I made music a part of my daily life. I feel whole and complete when I'm writing and performing, and over the years, just by following my passion, others have attached music to my identity. It's a given and it can't be separated from who I am.

Through music, I was introduced to other art forms, and I've learned so much more about myself through multiple methods of creative expression.

For me, music is a form of self-expression - similar to fashion. I also love expressing myself through what I wear, and I've been conscious of my fashion choices since I was in middle school. My introduction to fashion came through basketball shoes. I remember being 12 years old and my grandma buying me a pair of my favorite player's signature shoes. I can still remember the feeling of wearing them to school for the first time and getting so many compliments! I was hooked, and it was at this moment when I realized that I needed to build my outfits around my shoes. Having multiple options for shoes really allowed me to expand my wardrobe and be bold with my choices.

In high school, and even more so in college, I became known for my style. It's a really big part of my identity, and it even helped me display my disability more prominently. When I was first diagnosed with SMA, I wanted to hide from the world. But because I loved being bold with fashion, my outfits would be bright or unconventional, and I felt this brought attention to me. It helped me to become really comfortable in my skin, which made me want to highlight that I walked with a limp because of SMA. I even incorporated accessible elements (that were also stylish) into my clothing.

Along with creating my music, I've cultivated my own style for the majority of my life, and following that passion has played a gigantic part in shaping who I am. It says so much about who I am without me saying a word.

When I tell people that Céline has SMA, they often say things like, "I'm so sorry, that must be so hard for you." But for me, the truth is that I'm comfortable and happy with the busy life that comes along with being an SMA mom. Of course, when I first got the news, it was an extremely difficult time, to say the least. However, at this point, I have completely accepted Céline's diagnosis and have adjusted.

I don't think about her diagnosis much from day to day. We've made many modifications to our everyday life, but it's second nature at this point. Céline does just about everything a typical child would do (albeit differently), and she fully enjoys life. I love my life as her mom. She is happy, and that makes me happy.

With that said, she does have limitations due to her disability. For the most part, she seems completely unbothered by her constraints, but there are some days that are hard for us. There are days when she falls a lot, and I constantly have to pick her up because she can't get up on her own yet. There are activities that she simply can not do, no matter how much I try to make them accessible. There are times when she is frustrated. And I get frustrated too.

There are also times when I worry about her future. But these are feelings that every parent feels, whether their child has SMA or not. Frustration, confusion and fear are part of parenting. That's the first thing I remind myself when I feel down - that these feelings are a natural part of life that I should not focus on because there is no room in my day, and they do not serve me. Those negative feelings make my job as a mom even harder, and I simply don't have time for them.

I choose to focus on the positive and the possibilities. Usually, I can will my thoughts into a positive space on my own. But sometimes, that's just not enough, and the negative thoughts loom. In those moments, I lean on my support system. For instance, my husband reminds me that we are fortunate enough to be facing SMA in a time where so much more is known about how to manage the disease than in the past. My best friend also assures me that I'm doing a great job and that Céline has come a long way. At times, I turn to my iPhone, where I have an album of Céline's milestones since her diagnosis.

When you're in this journey day in and day out, as I am, it can be hard to see all that we have overcome, and how much has changed. But when I am able to see pictures and videos of Céline through the months and years, it reminds me that she is remarkable.

It can be hard to stay engaged, especially in advocacy work. There's always something vying for our attention, from social media to petitions to our own health and well-being. Burnout is the inevitable result - exhaustion so pervasive that we have no choice but to disengage at times.

This act of disengaging isn't just natural; it's healthy. It allows us to recharge and rejuvenate, so we can show up as our best selves. But sometimes we forget to return. We've grown so accustomed to isolation that we struggle to look beyond our immediate spheres, beyond our own lives.

I see this a lot in the disability community. Life with SMA - or any other rare disease - is difficult. Sometimes, it's all we can do to look after ourselves, let alone someone else. But I push myself to show up.

I get back to the work.

I try to remember that our community is bigger than it seems. For every person in the #DisabledAndCute hashtag, there's someone out there with unmet needs.

Just because I feel seen, doesn't mean that others do.

This is true for the SMA community - people around the world with different life experiences and resources at their disposal. But it's also true for the disability community at large. Invisible illnesses. Ambulatory folks. The list goes on.

Some of us are thriving, and some of us aren't.