Balancing Hope for the Future With a Focus on Today
It’s not uncommon to plan for the future. Most of us have at least an idea of what we’d like our lives to look like five, 10, or 20 years from now. Some people even lay out detailed plans for how they intend to accomplish their goals regarding careers, marriage and family, travel, and more. But what happens when you need to factor a rare disease like SMA into all of your plans?
When I was diagnosed with SMA in the late 1990s, my parents were presented with a devastating prognosis: Their baby girl wouldn’t live past the age of 3. The medical world couldn’t offer anything except palliative care. There was no cure and no treatment. There would be very little future they could plan for, and their daughter would never have the opportunity to make plans of her own.
The odds weren’t good, but my family has a tendency to be hopeful even when hope appears to be lost. That’s not to say we aren’t realistic. The prognosis the doctors gave was typical at the time, and it often proved to be accurate. While we’re always aware of the realities and risks of living with SMA, we find that there are still reasons to hold on to hope. For us, the greatest reason is our faith.
Through a combination of faith, love, resilience, and good medical care, the age of 3 came and went. With each passing year, we find ourselves experiencing more and more of the future that was far from guaranteed.
There were plenty of moments when it seemed like we might not make it this far, though. I’ve had my fair share of risky (but necessary) surgeries, severe illness, and other close calls related to my health. One of the most notable scares would have to be my hospitalization in 2011 at the age of 13.
During a time when my peers were focused on their education, extracurricular activities, and being teenagers, I was fighting for my life, and my family was busy fighting for it, too. All of my plans for high school and beyond had to be put on the back burner until I recovered — if I recovered. And I wasn’t the only one who set my plans aside. My mom also frequently changed her trajectory to care for me as my condition rapidly changed and the new extent of my needs was discovered.
After being released from the hospital, my condition was still rather rocky, and the days were filled largely by managing my extensive care. As my ventilator breathed for me 24/7, life continued one day at a time.
Maybe there’s a lesson to be learned in that. Now that I’m healthy (at least by SMA standards), the past can serve as a reminder to continue living day by day, at least to a degree, so that I can take time to focus on what’s happening now and savor each moment as it comes.
There’s also some practicality to living in the present. With SMA, each day requires combining the usual work, social, and family activities with breathing treatments, tube feedings, rest, and more. It would be impossible to tackle caregiving needs and normal daily activities without a game plan, but sometimes it’s easiest to just focus on today and worry about tomorrow’s details when it gets here.
And it’s important to be flexible and adapt when you need to because even with a solid plan for the day, life is unpredictable — with and without SMA. Do your best to roll with the punches.
While planning for a single day with SMA tends to be fairly precise, planning for the future isn’t an exact science. My future has always held so much uncertainty, but that doesn’t mean there isn’t room for hope. There’s always room for hope.
I don’t know what the future looks like, but I hope it’s filled with love, joy, laughter, and time with my favorite people. I hope it offers ample opportunities to keep traveling, be a part of amazing communities, and make a difference in the world. I hope it helps me grow and be the best version of myself. I don’t have a plan for how I’ll reach that future, but it sounds like a good one to strive for.
Focusing on today and dreaming about tomorrow are both important. The key is balance. Don’t get so consumed by one that you forget about the other. Leave space for both, and always remember to have hope. Hope for today, tomorrow, and every day that comes your way.
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.
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