Every year in June, I can’t help but reflect on my fourth child Fulton's diagnosis with Spinal Muscular Atrophy (SMA) and his first birthday (which fell a little over a week after we got the news). My oldest daughter Addie was six when Fulton turned one. Having a house full of big kids seemed so far away, and there was a part of me that wondered would Fulton reach 9, 10, or 11? If he made it, what would his life be like?
As each year has moved forward, it’s become clear that his life, by all accounts, is pretty awesome. He's as happy as any other 11 year old I know. The painful emotions I wrestled with in those early weeks and months following his diagnosis, while easily recalled, are now a part of my past, not present.
I thought I would give a quick list of seven things that through the years have aided me in reaching acceptance, and ultimately peace and joy, with our situation.
1. Connecting with national charities and support groups related to my child’s condition. For me, that’s the MDA and CureSMA. Groups at a national level usually can help pass along information about treatment, drug trials, and standards of care that local doctors might not know about. Their fundraising helps fund new studies and programs that directly benefit member families (like MDA camp). National organizations usually put out publications and regular correspondence that keep families in the loop. If your child has a rare disease, it’s good to know there’s other families like yours out there somewhere, even if it’s not your backyard. They’re a good first place to look to make connections.
2. Connecting with local charities, organizations, and support groups. Personally, I’m connected with the MDA locally as well, and I’ve been working with Fulton’s nursing agency to help build up a local support network for medically fragile families. There’s also opportunities through his school to connect with other parents, and we’ll continue to participate in Challenger Sports. These groups might not be disease specific, but bring together people locally who can still relate to challenges of parenting a child with special needs. If you want to know about state programs, local opportunities, etc. these are your go to folks.
3. Reaching out to other parents directly on social media. Once I found one contact, I simply asked to be put in touch with other families and within a short amount of time I found another homeschooling mother with two boys with SMA, and numerous other moms I could message with my questions and concerns. It may seem strange to message strangers out of the blue, but when your children share the same diagnosis, you’ll find it much easier to introduce yourself and immediately launch into detailed medical histories. At the same time I was messaging people, I also joined several SMA groups on Facebook. Depending on your child’s diagnosis, you might not be able to travel, so asking questions online quickly becomes an easy way to learn and meet new people.
4. Reading blogs by people with SMA, and other adults living with various disabilities. I learn as much from these people, and sometimes more, than the other special needs parents. I’ve learned how I need to better advocate for my sons, and help them thrive in an ableist society. And most importantly, I learned that disabled people are happy and not spending all their time wishing they weren’t disabled. My sons don’t need to be cured to live happy, fulfilling lives, and there’s a lot of peace and freedom that comes from that realization.
5. Writing. It’s how I work out my thoughts and feelings – whether it takes the form of blogging, journaling, or scribbling down pages of random lists in order to organize my scattered thoughts. My keyboard has served as my therapist and if you’ve been with me any length of time, you’ve read the fruits of this journey as it’s manifested itself via my blog. Not everything has been for public consumption; however, sharing some of it, and receiving feedback, continues the growing process.
6. Making time for spiritual growth. Even when it was hard, and I could only go through the motions, I can see in hindsight how even that helped me forward. But there are times when it still requires a concerted effort. I never regret the time I put into prayer, receiving the Sacraments, spiritual reading, attending Adoration, etc., but often I can find many excuses to not do those things.
7. Making time for my marriage. My sons require a lot of time and care, and then I have three other children who need my love and attention as well. Plus I homeschool! And the house is a mess! But my husband Tony and I have never used any of it as an excuse to not spend time together and that’s blessed our relationship and our family. A serious medical diagnosis can wreck a troubled marriage and strain even the best. We’ve managed to survive, and thrive, and come out stronger through it all.
What has worked for you? What suggestions would you add?
Kelly Mantoan is the founder of Accepting the Gift. She blogs at thisaintthelyceum.org on Fridays.