Stories

Part of what has helped us face this uncertainty together is accepting that the book that we’re writing might be very different from other families’ stories.

It's really difficult to put yourself out there and form your own community. But if you can find people that are interested and people who need that community as much as you do, it becomes a lot easier.

Traveling is a feat for anyone. Now, throw in a disability – throw in caregivers, equipment, terrain issues – and you have another beast altogether.

Accessibility, in the end, comes from folks putting others first and working together to find creative solutions.

They are not perfect. But they are mine. And therein lies their power. My stories are a curious amalgamation of dreams and experiences.

My Burden Complex was simple: growing up, from the ages of about 10 to 25, there were times when asking for help from others created a feeling of immense guilt within me.

We often joke that we have spent too much time together. If we can read each other’s mind, something’s got to give, if only to preserve our sanity.

It's all about a mutual friendship and relationship, and encouraging one another to go further.

The key is to see people—truly see them—and let the value of your relationship be deeper than whether or not they help you with your wedgie.

Over the past four years, I've learned that caring for your partner can strengthen a relationship and it is not a burden.

Throughout our relationship, Hannah and I have definitely used humor and loving support of each other, and flexibility to handle all kinds of frustrations.

SMA isn’t a barrier to living a fulfilled life; it simply means finding what a fulfilled life means for Kaysen.

Today, we want to share with you some tips for keeping the love alive and communication open in your relationship.

Finding your passion in life can often feel incredibly difficult, but if you know what to look for, it doesn't have to be as hard as you think.

It’s hard to find your passion in a world that tries to erase you. It’s hard to find your passion when, most of the time, disabled people are relegated to hospitals and living rooms.

Through this experience, I learned the beauty of enriching the lives of others.

So much of who we grow up to be is derived from the people who raise us, the world they shape around us, and the ways they help us navigate through that world.

Raising children with disabilities looks an awful lot like raising able-bodied children. At least, it can with the right tools and mindset.

Grief is something you have to process, whereas having SMA was the only life I’d known.

I didn’t immediately realize my peers were getting an entirely separate curriculum tacked onto their education. It was a gradual revelation for me. Subtle indicators until eventually, it was undeniable.

Neither disability nor queerness are choices, but we do get some say in where our journey with each takes us.

While I didn’t stick to a career in the music industry, I’m still active in the community. Instead, my experience as a music journalist jumpstarted my career as a writer.

Feeling afraid, doubtful, overwhelmed, or even just plain tired—it’s all normal.

At one point, I no longer knew what to do, but I knew I had to stand tall and here I am still standing tall, still fighting for my son.

We are quite aware that we will have to make adjustments to our living space if we want to keep our child at home with us.

I prefer to give people the time to offer to help on their own as opposed to making them feel obligated to help us. Sometimes, a little thing like asking if we slept well is a nice gesture.

Daily care for Jasmin requires the use of many supports including cough assist and suction machines, and love from family and friends.

Dinner is a time for us to be together at the table as a family and to eat with Jasmin, even if he has a tube. A time to see that we are a normal family, that the four of us sit together at the same place.

I am the mother of a sweet baby boy named Kaysen. He was diagnosed with SMA Type 1 roughly when he was about 8 months old and he, today, is now almost 3, he’ll be 3 in July of 2021.

I have a supportive community around me and I have ambition—those are the things that matter to me in life.

I don’t think I’ll ever tire of seeing Ben doing the things he loves with the people he’s chosen to surround himself with.

Something in my life that I think is extremely important is activity. That started out in a family setting.

Oftentimes, disability and travel don’t go in the same thought together but, we’d like to challenge that narrative so….

Buying a home is a stressful process for everyone. We did our best to have fun with it, and to remind ourselves that – stressful as it may have been – it was also exciting!