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

It's strange. We work long hours for companies that can easily replace us. If we're lucky, we like what we do and receive a fair wage. If not, we do it anyway.

We choose joy.

Sometimes after work, we continue the work required in our family. We respond and act quickly when our child is in distress. We don't sleep when our child is in respiratory distress. Yet, we listen when others tell us how tired they are.

And we choose joy.

Life with a medically complex child often forces us to slow down. Sometimes, life slows to a complete stop. These times are difficult as we watch the world around us move on while we stand still.

But still, we choose joy.

A trip to the zoo means loading more medical equipment into our vehicle than exists in an average hospital room. Suction machines, spare batteries, trach vents, pulse oximeters, nebulizers, etc. The list goes on and on. For our family, it includes transporting two power chairs in a borrowed pickup truck (to be driven separately) with a ramp that works but is super sketchy because the chairs weigh 350 pounds each. By the way, a trip to the grocery store requires the same load. We're spectacles of society, sometimes pariahs.

Time and again, I meet other fathers in our extended community, from all different backgrounds, all different professions, with all different anything - you name it. We not only share our experience of having a child living with spinal muscular atrophy (SMA), but also we share our joy. Not all of us for sure, and not all of us all of the time, but enough that I'm compelled to talk about it. Maybe some of us are faking it, but I'll receive it all the same. Our joy is what keeps us connected to our family and to each other.

Our joy inspires me.

I have always had an entrepreneurial spirit. As a little kid, I was always collecting, trading, and selling things to make money. In my teenage years, I was the go-to babysitter, and I did some side jobs here and there. I worked as a telemarketer during and after high school, but never pursued a career. Money management and financial independence were some things I learned and valued from a young age. I always knew I wanted to be financially independent, but having spinal muscular atrophy (SMA), I faced some challenges.

Over time, I realized I had some mental roadblocks and some entrepreneurial fears that were standing in the way of my creativity and motivation. I was too concerned about the future and was stalled in my own fixed mindset that SMA made me feel stuck or confined. I knew that being in the present moment and figuring out the root cause of my limiting self-beliefs was the only way I would be able to let go of those fears, be successful, and follow my passions.

I started using social media more and interacting with other people in the SMA community. It was and still is empowering seeing other disabled moms and people with SMA putting themselves out there, traveling, and living their best life. My community was giving me encouragement and support. The fear I had of being my authentic self and pursuing my passions was slowly but surely fading away.

When I had children of my own, the feeling of financial confinement I had always felt, started to flood in even stronger. I wanted to be able to offer my children the best life and experiences that I could. I had dreams and goals for myself and my two children that included buying a wheelchair-accessible van, a house, and taking my kids on trips... all things I strive to do. Before having children, as a single person, decisions were a lot easier but now a choice needed to be made on how I was going to live life with my family.

Motivated by motherhood, I gained the courage to move forward. To not focus on my disability, but instead, use my skills and abilities to build a business that helps other people and moms with disabilities to start and grow their businesses. I love networking and building connections. The relationships I've built with different people have helped me get where I am today with my business and life in general.

If there are a few things I've learned about starting a business or bringing a current business to life, they would be:

1. Have a clear vision.
2. Join or build a community.
3. Decide how to balance work and family life.

Having a clear vision is more important to me than ever. It keeps me motivated to continue doing what I need to do and to get where I want to be. I want to encourage my children as my mother did for me, to have fearless dreams and aspirations. Throughout school and into adulthood, I want them to have inner strength and a strong sense of self. All I can do is continue to love and encourage them and their belief in themselves and be an example.

I'm Kristen, single mom to one very incredible boy, Jack, who is six years old and lives with spinal muscular atrophy (SMA) type 1. Until you're a parent to a child with a medical condition, it may be hard to know the depth of your strength, determination, and resourcefulness.

I gave birth to the most precious boy, Jack, in August of 2015. I often found myself daydreaming of a life with just my little boy and me. I dreamt about adventures with him at the beach, riding roller coasters, going to soccer practice, and traveling, just the two of us. Jack and I have lived with my parents since his birth. I'm so glad we do, because I didn't know what the future held. When Jack turned a month old, we noticed something different about his body. Our pediatrician also took note of Jack's lack of head control and the changes in the movement of his arms and legs. The next day, we were sent to a neurologist, who immediately thought he had SMA. Two weeks later, Jack received his official SMA type 1 diagnosis.

As SMA started to show in Jack's little body, I quickly realized the power of educating myself. The experienced SMA community shared real-life stories with me and others in my shoes. Virtually, they taught me ways to fit physical therapy and the tips we got into our lives. They told me what toys were best for someone with little movement. I learned how to make our house accessible. The community is a wealth of knowledge and support. I felt strongly that I needed both. I quickly made close bonds with lots of parents; after all, we had so much in common. They have provided so much insight into my motherhood and parenting journey.

As a single parent, I've needed to build a village of family, friends, doctors, nurses, therapists, SMA families, and use online resources. I am so grateful for my parents' help that I have labeled them "co-parents" of Jack. I love them so much, I wouldn't have it any other way.

I've made myself a person of service to the community, which has brought me so much happiness. Community events are my happy place. Just seeing everyone together (SMA-affected, unaffected, parents, family, and friends), it's an emotional experience.

My parenting journey has been all over the place. We went from being told Jack may have a shorter life expectancy to realizing that there is so much hope for those with SMA. I do my best to make sure that Jack is happy and comfortable. I find power in focusing on the things he can do, instead of the things that are difficult. Then finding solutions for things that seem difficult. Jack has been on some scary roller coasters, walked the beach in a hiking backpack, and has been on many vacation adventures. Jack and I even went on our first solo trip earlier this year! So far, we're doing pretty well at accomplishing all the daydreams I used to have and creating new ones.

All lives are special, but I like to think that we are some of the lucky ones. We are lucky to know the value of every single day and every little and big milestone. I get by with a lot of help from my family and friends in the SMA community. How do you get by?

When Céline was diagnosed with spinal muscular atrophy (SMA), her neurologist told my husband and I that physical therapy could, without a doubt, be beneficial to her. From that day on, we committed to focusing on physical therapy at home and incorporating it into our everyday lives. There are so many aspects of SMA that simply can't be controlled. Committing to doing physical therapy is not one of them. Since we can commit to doing it, I've put a lot of energy there.

I'm not a physical therapist. I'm simply a mom, improvising ways for my disabled daughter to reach her fullest potential physically. I get a lot of questions about Céline's exercise regimen, so thought it might be helpful to share what has worked for us.

In some ways, this role comes naturally. I'm a fitness enthusiast and health nut. Exercise was already a way of life. The real challenge was making this a way of life for a tiny person. Getting a toddler who has a lot of physical challenges and her own agenda to do physical therapy day in and day out is not an easy feat, but Céline is a trooper - and because she has been doing this since she was six months old, it has become a way of life for her, too.

And she frankly won't cooperate if she doesn't like something. In the beginning, the majority of our physical therapy happened during bath time because that time already existed in our schedule, and she's always loved water. Now, bath play has turned into swimming, weight bearing exercises have turned into walking, tummy time has turned into crawling and so on. No matter what particular skill we are working on, I try to make it lighthearted and often provide rewards.

I can not take sole credit for Céline's exercise regimen. It is a team effort. If Céline doesn't cooperate, nothing happens. She is the most important factor in this equation. We work with physical therapists at home and in facilities that help us create short-term and long-term goals and exercises to accomplish them. I keep in touch with other SMA parents and we share tips, tricks and news on the latest equipment. Nothing motivates Céline more than trying to keep up with her peers, which is why she spends a lot of time in school, on the playground and doing extracurricular activities.

Now that Céline is in school, fitting in daily at-home exercise has become a bit more complicated. We generally do physical therapy before school, depending on how the morning is going. On Saturdays and Sundays, Céline does exercise with her nanny, who is a student working toward her degree in physical therapy.

There are days when we simply can't or won't do physical therapy, like holidays, sick days or when we're on vacation. On those days, we sneak in physical therapy in other ways. We might ask Céline to walk instead of using her stroller. On vacation, we may spend extra time in the pool. On rare occasions, we may not do physical therapy at all. However, we all need a break sometimes. But when vacation is over, we're right back to it, refreshed and ready to rock and roll.

Like every overachieving high schooler, I had dreams of attending a fancy, ivy-covered college, with sprawling libraries and a quad to boot.

It didn't take long for reality to temper my dreams. My college of choice had to be within driving distance of my suburban home. Then there was accessibility to consider, and scholarships, ad infinitum.

My college experience wasn't nearly as sparkly as I'd hoped it would be. While the campus was accessible, the faculty wasn't used to providing accommodations. By the end of day, I was exhausted - physically, mentally, and emotionally.

So, I left.

It wasn't an easy decision. It felt like I was giving up. Like I was disappointing the high schooler in me, who still longed for lecture halls and study dates. I wanted to be like everyone else in my graduating class, with their picture-perfect Instagram profiles. I wanted to be normal.

But I wasn't. I would never be. So I transferred to an online program and never looked back. Time and time again, I see this conundrum in life with SMA. I want things to be a certain way. I grew up expecting things to be a certain way - a certain education, a certain job, a certain house in a certain city with a certain way of going about my day. I pretend, if only for a while, that I am in control of my life.

Then I remember.

It seems that, whenever I learn this lesson, it doesn't take me long to forget it. Years after I transferred schools, I was faced with a similar dilemma: rack up tens of thousands of dollars in tuition so I could get an M.A. that would land me a job I probably wouldn't be able to handle or accept that some things I cannot change.

I cannot change my university's willingness to accommodate disabled folks.

I cannot change my body's ability to withstand a regular work week.

We can spend all our energy trying to make something work - shouting at the world until either it hears us or we lose our voice. We can try to be normal and beat ourselves up over things we can't control.

Or we can try something new.

I don't know about you, but I'd much rather hold life lightly - letting go of certain outcomes, and embracing whatever comes our way, trusting that we can make the best of any less-than-ideal situation.