Have you ever looked back at your life and wanted so badly to erase a moment in time, but also can’t imagine who you would be today if you were able to do that? Maybe it’s something you said, or something someone else did to you?
In 7th grade, I got caught cheating on a test. It was mortifying and for the longest time, I wished it never happened. Looking back now, that was a pivotal moment in my education. I learned a valuable lesson and it changed the way I studied. I became a really great student. I should have known cheating was wrong before getting caught, but I hadn’t put in the effort to prepare and I was afraid of failure. Would I have adjusted my study habits if this moment was erased? I hope so, but I don’t know how long it would have taken.
This past year feels like one I would like to erase. I spent more than half of the year living in the hospital with our son Brooks, which meant countless nights away from my husband and our daughter. We watched our son battle viruses and lung collapse, get poked, prodded, tested, you name it. We’ve had to navigate through the mess that is the Medicaid system. Of course, the worst news came in February when Brooks received a devastating diagnosis that forever altered our existence. If you were to ask me if I could, would cure I Brooks of SMARD? Absolutely. In a heartbeat. We are fighting every day to do just that.
In the meantime, however, our lives have taken an alternate course. We did not get to have a say in this change of paths. Diagnosis day is one of those moments in time I wish I could erase. I try to picture our lives without SMARD, without the trach and vent and g-tube and all the other medical needs. Life would be different for sure. Would it be better?
This is a really tough question. I think about the friendships we’ve made, from nurses, doctors, and therapists to other SMARD families. I think about the new perspective we’ve gained about life and love. I think about the lessons I’ve learned in empathy. I’ve seen firsthand the daily struggles of special needs families that I was blind to before. We’ve met some really amazing people that are impacting the world in big ways because of what they’ve been through. We’ve met people battling every day for just one more day with their loved one. I think about my faith and how it’s been tested, but also how it’s grown.
I guess in the end, I’m glad we don’t get to decide all of the things that happen in our lives. We are not in complete control. We do, however, get to choose how we respond to difficult circumstances. Some people say we’re strong, but God has a history of using people in the midst of weakness for his greatness.
I don’t regret the love and support we’ve been shown. I don’t regret the joy we feel when Sadie plays with her brother or when Brooks musters all of the strength in his arms to clap his hands and smile with pride. I don’t regret the lifelong friendships we’ve gained. I don’t regret the responsibility we feel to make the future better for other families facing rare disease.
I want to keep Brooks in this world as long as possible and to give him the best life we can. I know I can’t change what happened this past year, and I know I’m not in control of what happens in 2020. I can’t provide the millions of dollars of funding needed to save Brooks’ life on my own and I can’t do the preclinical research to make sure he gets treatment this year.
I can, however, bring an attitude of strength, hope, humility, and perseverance. I can make the best of this life rather than wishing for a different one.