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We Are Writing Our Own Book img

We Are Writing Our Own Book

Kaysen, Lana & Mark

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.

Kaysen, Lana & Mark
Kaysen profile img
Filling the Gaps and Building a Community img

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.

Kevan explores the Reed Flute Caves in Guilin, China with four of his friends. Kevan is being carried in his backpack by one of his companions as they all stand beside each other looking straight into the camera.

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

Kevan sits in his wheelchair, below a flight of stairs, with no accessibility for him to get to the top.

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

A photo of a card with a caption that reads “No One Is You and That Is Your Power

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

Shane sits in his wheelchair in the middle of a fully stocked supermarket aisle.

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.

Brianna poses in her wheelchair. Her Dad, who is also her primary caregiver kneels beside her; both are smiling at the camera with sunlight streaming in from a window in the living room.

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.

The Power of Friendship img

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

Kevan sits in his wheelchair at his favourite local coffee shop. The image shows him smiling in the middle of the shop with wooden furniture, table flowers and warm lighting.

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.

Caregiving Is a Two-Way Street img

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

Finding Love and Humour on Challenging Days img

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

Focus on What You Can Do img

Focus on What You Can Do

Kaysen, Lana & Mark

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

Kaysen, Lana & Mark
Kaysen profile img
Maintaining a Healthy Relationship img

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

My Journey in Finding Passion img

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.

Brianna poses in her wheelchair in front of a bookshelf filled with hundreds of books. She is smiling directly at the camera.

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.

Kevan being carried in his backpack by his friend, Tom, while on a trip in Paris. The Eiffel Tower, a popular tourist landmark can be seen behind them, with tourists milling around.

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

A photo of Kevan and his sister as toddlers, holding hands and smiling at the camera. Both Kevan and his sister have SMA Type 2.

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.

Kevan relaxes in an outdoor picnic, surrounded by greenery and trees. He sits in his wheelchair flanked by two friends.

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

Fulfillment in Many Forms img

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

Intimacy is for Everyone img

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.

Friendships, Identities, And Self-Acceptance img

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

Communication: Where Talent & Passion Collide img

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.

You Can’t Run on an Empty Tank img

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

Kaysen, Lana & Mark
Kaysen profile img
My Child Gives Me Strength img

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.

Commitment, Creativity, and Courage img

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.

All the Puzzle Pieces Fit Together img

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 To-Do's for Jasmin img

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

Facing Every Day as a Family img

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.

Play Time is Family Time img

Play Time is Family Time

Kaysen, Lana & Mark

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.

Kaysen, Lana & Mark
Kaysen profile img
University, Here I Come! img

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

You Are Not Alone img

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.

Finding Community Through Sport img

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

Disability and Travel Aren’t Mutually Exclusive img

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

Shane and Hannah smile in front of their newly purchased home with a sold sign next to them. Shane sits in his wheelchair and Hannah stands beside him with her hand on his shoulder.

Home Sweet Home

Shane & Hannah

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!

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