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

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.

I wish I could tell you that following your dream will be easy.

I wish I could tell you that life will reward you for following your dream. For showing up, again and again, even when it's hard.

But I can't.

My dream is to write books. Dozens of them, with swoon-worthy romances and hair-raising plot twists. Every story will feature a disabled girl and have, if not a *happy* ending, a narratively satisfying one. Maybe someday I'll hit the bestseller list, but in all honesty, I'd settle for changing a life. For showing disabled girls like me that they can star in their favorite narratives.

Your dream is probably different. Maybe it's falling in love. Maybe it's seeing the world, or having a child, or living on the beach with a cat, a dog, and lots of friends. Maybe it's all three! But at one point or another, you may feel like your dream is unattainable.

Your partner broke up with you.

Your travel agency won't accommodate wheelchair users.

Your book won't sell.

I wish I could say that following your dream gets easier. That, with time, the sting of rejection will fade to nothing. But I can't. Following your dream is *hard*, especially with a life-altering condition like SMA. Taking risks - like signing up for dating apps or moving halfway across the country - will always be scary.

Here's what I can say.

Life can throw some crazy curveballs, can't it? I remember once getting off a 19-hour flight to a country halfway across the world and receiving news that my wheelchair might have been left at the airport back home. Thankfully, it was just buried under other luggage, but it was a mess for a minute there.

Still, no matter how many systems we put into place or checklists we make, as long as people are involved, there may be unpredictable and uncontrollable variables to deal with. Curveballs.

I've never been much of a baseball person, but my wife is, so I'm learning.

But the point here is that it's not a blanket fact, "swing at all curveballs" or "don't swing at any of them." It all depends on...well, a lot of things. Here are a few factors that I like to consider when that "curveball" is headed my way...

1. Who is the pitcher? There is often a difference between the challenge itself and the challenger (if there is one specifically, though there isn't always). If a person or organization or building or system is putting an obstacle in my way, I consider their authority and/or expertise on the matter. Doctor, pilot, president? Fence, boat, mountain, stairs? Another friend in a wheelchair, a non-disabled friend or family member, a total stranger?
2. What's the curve/speed? Some challenges are manageable and realistic, while others simply are not. For example: stairs. It's one thing to face the challenge of a friend's house with one 2" step vs. the third floor apartment with no elevator. In the latter case, I would maybe meet somewhere else or just leave my wheelchair downstairs and have a friend carry me up.
3. How's your batting? The first two questions kind of go together, and these last three go together as well when considering my situation. I try to consider my own capacity first, and how I might handle the challenge - physically, socially, emotionally.
4. Who's on the bases? Next, think about who is on your team. What are they bringing to the table in this current situation that may help? I've been really blessed to be surrounded by a lot of creative people who are willing to jump in, go with the flow, and come up with out-of-the-box solutions on the spot.
5. What's the hit worth? At the end of the day, I ask myself: is overcoming this challenge a hill worth dying on? How will it affect me, my team, the challenger (if there is one), and the unassuming audience watching?

A few years ago, my family and I moved across the country to a lively town of many unknowns: Nashville, Tennessee. As we left our family, childhood friends and familiar surroundings, we were faced with a new scenario and asked ourselves: how do we make adult friends and navigate a new community as an inter-abled couple?

We've come to realize there is a large population of people who have never had friends with disabilities. Because of this, everything in our "normal" scope of life can be new to someone else.

Our hope was to make new friends, show them the fun people we are and truly enjoy our new city like everyone else did.

Making friends as adults has its struggles already, but mix in the unique situations of inaccessible houses, particular dining preferences and different needs, and you could easily find yourself with a "not-so-typical" friendship.

As we were seeking new adult friend groups, we wanted to help people better understand my needs and how I receive support from others (aside from my significant other). As we embarked on this journey of settling in our new community, we had to be very intentional with reaching out to new friends, putting ourselves out there and sticking true to the kind of friends we know we are and were seeking to have.

We love hosting friends, so we would invite new people over for dinners often. Opening your home and family to strangers can be a big jump for some, but we loved it every time. It allowed others to see us in our element. Me as a mom, Jake as the chef and all of us as friendly people. If that seems too personal, meeting for lunch is another option that has worked for us! Worried that they may pick a place that doesn't do well with your food restrictions or spatial needs? Suggest the location!

We decided early on to be open to new things! As we explored a new town with new friends, there were things we found that just didn't work for our situation, like hiking a waterfall. But we took those opportunities to communicate what would work for us, such as camping or outdoor movie nights.

We realized our new friends were not used to viewing life through "accessible or inaccessible lenses" in the beginning - but I can confidently say that has changed!

Ever since I could form words, I have been telling stories. It is my great passion in life. After college, a friend gave me a novel by a German cartoonist who pretty much broke all the rules of conventional storytelling.

That’s when I set out to self-publish my first book, and more followed over the next few years. None of these books had much to do with disability, and it was a constant uphill battle against people’s expectations.

Finally, I wrote a book about my experience with disability and it was picked up by a publisher. I saw this as two opportunities. First, it was certainly a story worth telling and I was happy to do it; second, I was hopeful that it might grow my audience and that audience would then say, “We see your value as a writer. What other stories do you have?” However, the battle continues.

Last summer, I had lunch with a fellow-writer, and we were sharing with one another our latest projects. I told him about the new book I was working on, and mentioned that one of the minor characters was a man with a disability. My friend’s initial response was that I should scrap the rest of the book and refocus my energies on telling that character’s story, with my unique insight on the subject.

I tell you all of this to say that, if you are an artist of any sort with a disability and you don’t want your art to be all about said disability, I understand your desire and I understand your frustration with a world that suggests otherwise. Whether you are a writer, musician, actor, poet, painter, sculptor, basket weaver, whatever, you are more than the disease in your body and your craft has the capacity to express more than the disease in your body, even if a lot of the world is too short-sighted to grasp that.

Every artist deals with this issue of consumers’ expectations.

But there are people who truly see you—those couple of friends who really get you. And you will find the same to be true with your art. Through the cacophony of people asking about your wheelchair, there will be a voice or two that celebrate your craft simply for what it is. Those couple of voices are more refreshing than you can imagine. If you pay attention to them, you will be revived, inspired, and carried along just fine. So keep an ear out.

We live in a culture of self-advocacy and self-preservation. But countless giants of history, including Theodore Roosevelt, have spoken of courage and “daring greatly” with direct correlation to putting others first. And the funny thing about putting others first, it means you don’t get to be first.

It is, admittedly, a hard pill to swallow. I have trouble with it every day, but I’m thankful for friends and family who are constant examples and inspiration for me to put others before myself.

I’ve been blessed with an amazing community around me, friends who pour into my life and care for my needs any way they can. My buddy Josh gets off a busy third shift job just in time to swing by my house and get me up in the morning. Last year, my neighbor Danny left his wife and kids for a week and flew cross-country with me to attend the wedding of my cousin – someone Danny didn’t know “from Adam.” At my local coffee shop, the baristas are happy to help me in the restroom, and the other patrons meet my needs like it’s just part of their daily caffeine intake.

And I’m asked on a regular basis how I do this, how I build my network or advocate for my needs. But the truth is, I don’t.

It may be cyclical, and kind of a chicken and egg situation, but we care for each other. I listen to them, I hug them and invest in their hearts. I ask how they’re doing and help any way I can to make their lives better. My friends go out of their way to shower me, dress me, travel with me, move a chair or pour my tea for me; they care for me because I care for them. If we put each other first, everyone gets taken care of.

Another aspect of building community is that it happens naturally. My community isn’t my doing alone. I’m just one of the guys, one of our crew, and any of us can invite others into the experience of our friendship. My job in all this is to be present and love those around me, and I too invite others in as they come by. And when it comes to your needs as a person with disabilities, as you spend time with new people, and they see your needs met by others, your needs become normal to them and next thing they (and you) know, they’re helping out too.

So, I’d say don’t worry too much about that side of it. Just love people, and don’t hide your needs, but put theirs before your own. Ultimately, it’s not about how people treat you, but how you treat them. That’s what builds community and changes the world for the better.