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

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.

Every parent's journey is different and has its own challenges. I tell myself that negative thoughts and emotions are a normal part of life and can be a natural consequence of a person's experience. Extreme challenges, such as life-threatening medical conditions with children, can naturally threaten my ability to focus on the good because my mind has been redirected to focus on those situations. These experiences can take a toll on mental health, making it difficult to maintain a positive outlook on life. Sometimes I feel like thinking positively is as laborious as training for a marathon.

I try to remind myself that when you're out of shape, it's hard to run a mile, let alone a marathon. You must train to run a mile, so you can run another mile, and then another, until you eventually run a marathon. Consistent training will inevitably improve performance. Likewise, when you train your mind to focus on the good, you can create a positive mindset. A positive mindset is not about wearing rose-colored glasses - it's about training the miles and miles of thoughts in your head to go where you want to be. At least that's what it feels like to me.

A mind's ability to think positively is as varied as a person's physical ability to run. Some people are naturally built to run. These natural runners step on a start line and cruise a mile time that takes others weeks to achieve. Some people can run barefoot or in minimalist shoes, while others need high support shoes. Some runners rarely get injured, while others manage ailment after ailment.

I don't need to compare myself to others to get better at it. I become incrementally better as I train my mind. As much as it may benefit others to be around me thinking more positively, I am the one who truly profits from being positive.

Training to run often creates a strange love for running. I also try to train my mind to push through and work hard, regardless of negative thoughts and emotions. Sometimes I find myself running on a day I felt tired or on a day it was raining. And not because I love running, but because I practiced being a badass long enough to know I can do hard things, even when I don't feel like it.

Just as a runner increases his or her threshold to endure running, I can increase my threshold to maintain positive thinking when faced with extreme challenges. When we actively work toward positivity despite circumstance, our mind has no choice but to follow. This is crucial to keep my mind from going down a sudden, sneaky, scary road not worth racing.

Some of the strongest runners known aren't necessarily the ones who won races; they are the runners who persevered because of their single-mindedness. It is possible to have a mind like a runner who fights the good fight and finishes the course. And I will!

When my daughter Céline ("jelly bean") was diagnosed with SMA, I was warned that I should not expect her to crawl. She wasn't likely to develop the strength for that particular skill within the age-appropriate timeframe. I made it my goal anyway.

Crawling in an essential building block for advancing gross motor skills, especially for a hypotonic (low muscle tone) child, like Céline. I was (and still am) doing physical therapy with her every single day and, while I don't have a degree in physical therapy, I know my child. I felt crawling was within Céline's reach. I could see her slowly but surely gaining the strengh to crawl, so I continued to push her. Even though I knew it was possible that she might not achieve our goal, I knew that doing the work toward the goal could only benefit her.

We worked specifically toward crawling for a year and a half. I challenged Céline daily, but tried not to overdo it to the point of failure or frustration. I also tried to make the process as fun as possible - because, let's be honest, that's the only way to get a toddler to do physical therapy. We found a therapist whose visions aligned with my goals and six months after working together, Céline was crawling.

We parents know our children best! And if there is something that can be done to help them reach a goal, or to make life more accessible, then as parents, we should do our best to support them.

In conjunction with Céline's medical team and my husband, we make decisions that we feel are best for her, even if they do not fit the mold. I cannot stress enough that I take into account Céline's doctors opinions and hold them at a very high regard since they are the experts. But there are certain decisions that only a parent can make.

Now that Céline is three, she is starting to set her own goals, regardless of what ANYONE says.

We are currently working on standing up without support from the floor and walking up the stairs. I'm also learning what it means to have a special needs child in school and that has opened up a whole new door of excitement, fear, uncertainty and, most importantly, advocacy for me.