In life with SMA, it means a lot to give even a little

For many years, there was a quote hanging in our local zoo, but I no longer remember if it was by Edmund Burke, who (rightly or wrongly) is credited as saying, “Nobody made a greater mistake than he who did nothing because he could do only a little,” or Sydney Smith, who said, “It is the greatest of all mistakes to do nothing because you can only do little.” Either way, the message is the same, and it always struck me as profound. The zoo applied the concept to rainforest conservation, but it resonates in many aspects of life.

As an adult with SMA, I’m accustomed to receiving care and kindness from others, and I strive to be gracious and grateful toward these people and their efforts. Whenever someone selflessly offers something that enhances my life and wellness, that is a valuable gift.

It takes a lot just to meet my basic needs, let alone my desires, and I deeply appreciate those who give of themselves to help me accomplish that. As my chosen full-time caregiver and care partner, my mom constantly gives her time, energy, skills, and more to provide for me in every way possible, and that sacrifice should never go unrecognized or underappreciated.

But what about people who can’t offer that much, even if they want to? Can they make any difference? According to the apparent logic of Burke and Smith, yes. Everything we give, individually and collectively, adds up to far more than if we gave nothing at all. It could grow bigger than we even imagined.

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What giving looks like

Let me give you an example. In a recent column, my friend and fellow SMA News Today columnist Ari Anderson wrote about how he recruits home healthcare nurses and touches on some reasons why they might choose not to work in his home. An additional reason I’ve encountered is that some people can only cover a couple of shifts per month and therefore feel they wouldn’t be helpful enough to my family.

I respect anyone’s decision not to accept a nursing position in our home, regardless of the reason. I want my nurses to feel comfortable working here and don’t want to take time they don’t have to give. I can’t help noticing, though, that the value of even a few hours that people do have available is sometimes underestimated.

It might not seem like much, but that little bit allows my mom to work, rest, attend to other responsibilities, or do something she enjoys, all of which she might otherwise miss out on while caring for me. She loves being my caregiver, but she should also have the freedom to invest in herself, other relationships, and anything else she chooses to.

It could also end up being precisely the time that needs to be covered at the last minute because someone else couldn’t come to work, thus saving us from having to rearrange our plans for the day. And if we had multiple people willing to work just a couple of shifts, it could potentially cover an entire week while a regular nurse is on vacation.

What looks small could make a big difference in our lives.

Of course, not everyone can provide caregiving services, and I don’t expect them to. There are other ways to provide a meaningful contribution to people living with SMA or other disabilities and their families. It could be as simple as saying a prayer, intentionally reaching out, offering other skills or services, or sharing unmet needs with your circle to help find people who can fulfill them.

Even with our physical limitations, those of us who have SMA are also able to serve others through giving. We just might have to get creative. I consider it especially important to care for our caregivers. November is National Family Caregivers Month, a great opportunity to give back to our caregivers. However, let’s remember to show up for them consistently throughout the year, just as they do for us.

A few ways we can do this are supporting their interests, careers, and needs, giving our full attention to conversations, being their cheerleaders and advocates, and being present in the time we spend with them.

At this time of year, thankfulness abounds, as it should, but let’s not forget there are two parts of that word “Thanksgiving.” The reason we’re thankful is because someone cared enough to give us something we need or enjoy. And perhaps one of the ways we can express our gratitude is by offering our own contribution in turn. It doesn’t have to be big or fancy, but it can be. No matter the size, it just needs to be genuine and loving, and over time, I promise the impact will grow.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.