The Lessons I Learned During My Son’s First Year of Life With SMARD

Our son turned one this week. This is an especially significant milestone because at just 4 months old, Brooks was diagnosed with spinal muscular atrophy with respiratory distress (SMARD), an ultra-rare life-limiting degenerative disease that has been described as ALS for babies. In his first year, he was revived with chest compressions multiple times, including twice by me. He now breathes 24/7 on a ventilator and has minimal muscle function, but his cognitive abilities are unaffected.

I don’t know what lies ahead in Brooks’ second year of life, but this past year has been our hardest one yet. Oddly, it was also a year filled with love, family, community, purpose and joy.

I’m sure you’ve read something like this before. You’ve read about someone with a life-altering diagnosis and they’re pleading with you to look at things differently, because life is so, so precious. I’ve read those posts before. They’re great, tear-jerking. When I close the browser, however, I go back to my daily struggles. Don’t do it. Stop worrying about things that don’t really matter. Connect with God, connect with your family and friends. Be joyful in spite of what’s going on around you.

All that said, I doubt these thoughts will change your life, but maybe they’ll make you re-think your day:

1. There is more good in the world than people are willing to believe. We are living in a time filled with division, but at the end of the day, so many people genuinely want to help.

2. Be willing to let people help you. Connect with others and build a community. We weren’t meant to live this life alone.

3. Innovation and creativity are vital to human progress. From the researchers working to find a treatment for SMARD to the therapists who find ways for Brooks to play like any other 1-year-old, I am thankful for people who think outside of the box.

4. We as people are capable of so much more than we think. Stop putting limits on what is possible.

5. Time is relative. “I don’t have time” is a lie. It really means “that’s not important enough,” which is OK if that is how you feel. For the past year, I have had to realize what is really important and that I just don’t have time for some of the other stuff.

6. I believe God really does show up when you’re at your lowest of lows if you let him. When we stop seeing him as a genie who grants wishes, but instead as a Father who loves us immensely, independent of our circumstances, we can be at peace and experience true joy even when walking through valleys.

7. You never know when someone is having the very worst day (or month or year). Be kind always.

8. Life may not go according to our plan, and we don’t always have to understand why. God is faithful and the twists and turns we take can be more beautiful than our original plan. From the outside looking in, our situation may seem to be all “sad,” but we are overjoyed to be Brooks’ parents and equally proud of both of our children every day.

9. Every day is truly a gift. Every smile, every snuggle, every moment together.

10. Sometimes greatness is disguised in a tiny body, fighting against all odds, doing common things with uncommon effort.

Life is really precious. I’m telling you it’s true, and I wish I could have lived before with the perspective I have now. I look back on “easier” days, but I know I didn’t think those days were “easy” when I was in them. I wish there was a better way to explain it, so everyone could live for today without having to face the difficult truth that there may be no tomorrows. I’m reminding myself to focus on what really matters as I’m writing this now.

Thank you to everyone who has helped us survive this year. From the doctors, nurses, respiratory therapists and other specialists who literally helped Brooks survive this year, to our family and friends who cooked, cleaned, donated and just sat and listened. We love you more than you know. We know you will continue to be there for us and we pray this next year you will get to see Brooks get gene therapy thanks to smashSMARD.

Follow this journey on Small But Mighty.