These are the gifts that truly matter for someone living with SMA

If you’ve ever been unsure of what to give someone with spinal muscular atrophy (SMA), you’re probably not alone. But I have good news: The perfect gift doesn’t always require a hectic holiday shopping trip or mindless internet browsing.

Often, what we want most won’t be found in a store or online.

Gift experiences

Some of my favorite gifts have been experiences. When you take the time to find out what a person enjoys, you give them the opportunity to experience something they’ll never forget.

Experiences are gifts that keep on giving — truly— which is one of the reasons I love them so much. Because what you’re actually gifting are memories and special moments.

Every experience is an opportunity to spend intentional time with you, friends, or other family members. And for people with SMA, getting out of the house might be its own kind of treat.

Experiences also offer a welcome change from the everyday. While SMA still demands consideration, it gets to share the spotlight as fun, laughter, and togetherness take center stage.

Recognize our differences

Of course, SMA is different for everyone. We all have very individualized needs, even when we’re diagnosed with the same SMA type.

While one person may have decent lung function, another might have better arm mobility. Comparing one person with SMA to another is like comparing apples and string cheese. It just shouldn’t be done.

Recognizing and respecting our differences in abilities and limitations makes it easier to understand and accommodate our individual needs. It also takes the pressure off of us to keep up with peers, disabled and non-disabled alike.

How we each choose to address our healthcare needs and design our lifestyle with a rare disease also varies. Our choices won’t all be the same, nor should they be. We’re unique individuals just like everyone else, and what works for some won’t be right for others.

That is why one of the best and most supportive gifts is to simply embrace our differences, respect the decisions we make (often with professional advisement), and trust us to know what we need for our SMA journey.

See people instead of patients

I hope those in the medical community will consider gifting the perspective of seeing us as people, not just patients.

Yes, we come to you for medical treatment, but we have lives outside the hospital and doctors’ offices. Providing the best care possible requires looking beyond a chart filled with health conditions, lab results, and scans.

After you’ve addressed our symptoms, ordered tests, and refilled our prescriptions, why not try asking about our non-medical life? Perhaps we’re excited about a new project, our recent vacation, or what we’re reading or binge-watching. Maybe you have a recommendation for a post-appointment snack — my pulmonologist enjoys swapping restaurant recommendations during our visit.

Because when you get to know who we are as people, you’ll more likely become better informed about our healthcare needs, too. It’s a win-win.

Remember the caregivers

As society gets better at communicating with disabled people, I’ve noticed that caregivers get pushed aside and ignored. While we encourage disabled people to be independent, we fail to acknowledge those who enable and empower that independence.

Truthfully, many of us are alive and thriving because of the selfless caregivers who get us out of bed, care for us, and set us up for success every day. Forcing them into the background isn’t the reward they deserve. There’s plenty of room for everyone to shine equally.

This Christmas, appreciate a caregiver. Then try it again the next week and the one after that. Continue to regift over and over.

Trust me, it’ll never go out of style.

Spread joy like germs

Actually, keep the germs, please. But an equally infectious and much healthier alternative is joy. Living with SMA isn’t always easy, and it’s important to acknowledge that. But that doesn’t mean the hard stuff takes up so much room that we can’t make space for joy, too. And you can help us fill that space to the brim because you have the potential to be a beacon of joy.

Share your life with us, and invite us to be part of yours, even when we can’t say yes. However you do it — telling a joke, being a good listener, bringing a treat — remind someone that they matter to you.

Become the reason someone smiled today. That is the most priceless gift of all.