A diagnosis of spinal muscular atrophy in his infant son led this father to a new outlook on parenting.
Momentum and acceleration.
These words surface thoughts of physics, a topic that means so much to Donovan, my 4-year-old son. It is amazing to see how much he knows about the subject — more than many 4-year-old kids — and continues to learn as he grows.
You must be thinking that this boy is a genius (you aren’t wrong). Or perhaps he comes from a family of scientists (that’s not the case). The truth is, momentum has defined Donovan’s life, from his first month to this minute, as I watch him maneuver his wheelchair with deep focus.
Nothing about Donovan’s birth seemed abnormal to his mother or me. But at his 1-month check-up, his pediatrician noticed that he was floppy.
In no time, the pediatrician was calling every floor at our local children’s hospital to see who could admit Donovan and help us understand what might be wrong.
Our baby boy’s unexpected diagnosis of spinal muscular atrophy (SMA) type I at 4 weeks old brought us to our knees. We soon learned that if this disease goes untreated, it leads to death or permanent ventilation by age 2 in the vast majority of cases.
Imagine the pure horror of being told your child will lose any strength he already had, followed by his ability to swallow, then to breathe. A doctor told us there were no approved treatments for his disease, and that we should take Donovan home — and love him for as long as we could.
We eventually learned about a clinical trial for an SMA treatment that could be given to Donovan. It sounded promising, and the uncertainty of what the outcome might be felt better than giving up hope. We decided to participate in the clinical trial.
Despite the waves of emotional trauma that had engulfed the prior weeks, I remember the moment the tide turned. Donovan was lying on his changing table one day, still unable to move.
Suddenly, we saw his hand just barely lift. Maybe this was a sign from above, reaching out to let us know that we would somehow get through this. It felt like there was some forward momentum.
Years later, Donovan is now nearly 5 years old and grows stronger each day. I watch in awe as he sits up completely on his own, feeds himself, and moves around in his wheelchair. Each movement is a milestone that opens the door to big possibilities.
Donovan finds great joy in tracing letters and writing — pastimes requiring fine motor skills that we’d never imagined he’d have. He is so enamored by bugs that he wants to hug them — he even asks if he can tickle them!
He loves science and anything related to physics. After he goes to sleep, I spend my time studying the subjects he has become so enamored by so I can make sure I still have things to teach him. I still cannot believe this inquisitive, sensitive child is mine.
Parenting Donovan continues to be a balancing act between cultivating his character and acknowledging his limitations. It can be overwhelming sometimes — at times Donovan has more physical therapy homework than there are waking hours, but the promise of small changes in a forward direction is a driving force.
My homework for Donovan is to be a kid. Before his treatment, I accepted that I needed to be there for him, however short our time together. But after it, I let myself dream about his future as I live out my dream of being his dad.
I wanted to share lessons that have guided and comforted me not only as Donovan’s dad, but also as a dad of a child with a rare disease:
Accept that you will lose control
In my experience, dads tend to measure themselves by their children’s outcomes, or the sum of our beliefs plus our actions.
If our kids look and act like they should, then we feel like good dads. But if the outcome is bad, or surprising, we spiral inward, wondering where we took a wrong turn.
That equation doesn’t work for so-called “typical parents,” but it completely dissolves when you throw in a rare disease. Our kids will create cycles of shock, amazement, and sorrow, and they will never end up like we imagined, which is okay.
Special needs children will never look or act like we thought they would, which does not mean we are bad dads. It means we are measuring our success incorrectly. Success as a dad is measured by loving your child and being present, not by how the child turns out.
Even though the same rules don’t always apply, the principles do
My other beautiful child, Elizabeth, does not have SMA or special needs. Our principles are to teach both children to grow into mature, independent adults, though the rules we apply to accomplish this is different with both children.
We try to limit her screen time so she can learn to explore and interact with the world. With Donovan, we can’t make that call as easily. His screens help him learn how to explore and interact in a world that wasn’t built for him.
Teaching independence means different things for Elizabeth and Donovan. We’re teaching our daughter how to tie her shoelaces. We’re showing Donovan how to ask for help… politely. Both children need to master these skills to grow into mature adults.
Struggling and thriving aren’t mutually exclusive
I still don’t know how to cope with my perceived feelings of failure. My default response to fear is to shut down and be in denial. After Donovan’s diagnosis, I was in a mental daze for more than one year.
Parents of kids with special needs should know that the margin of error is exponentially smaller.
If I turn my head away and Donovan falls, he could end up in the ER. If he has a contracture in his hip, I’ll assume we hadn’t stretched enough that week.
If I turn my head and Elizabeth falls, she’ll probably pick herself back up, and I’ll never know it happened.
We hear a lot about the great job we’re doing, but that encouragement doesn’t always land. I’m sure all parents feel like failures sometimes. There is no perfect parent, the good news is your child doesn’t need you to be perfect. They need you to be present and love them.
I am trying to learn to simply enjoy Donovan, rather than focusing on all the mistakes I feel like I have made. I’m thankful that psychologists and therapists exist to help us start to forgive ourselves.
Enjoy every atom of your child
I’m working hard on my relationship with failure because I refuse to let it rob me of the happiness Donovan brings. It’s easy to get lost in the disease when so much of your time is spent trying to “fix.”
I was devastated when I came to terms with Donovan’s diagnosis and the impact it would have on my plans for him. I couldn’t have been more excited to teach him baseball, and that had been taken away from me.
But for as long as I live, I’ll never be disappointed in him, even if I am disappointed for him.
I watch a lot of movies with my kids; many have a hero who makes sacrifices and fights for a greater cause. I get inspired by these heroes, who remind me of the person I try to be for Donovan.
I know that Donovan was put in my life for a reason. The sacrifices I make in my career, sleep, housing, and countless other areas for the greater cause of his fight against his SMA, makes me the hero of the story to Donovan.
To all the parents with kids with special needs out there who are sacrificing and continue to fight when they feel like they have nothing left: You are spending your life doing something even more important than any hero in any movie. You, flaws and all, are your child’s hero.
That brings me back to momentum.
There is no shortage of it in Donovan’s SMA journey. Or mine. We can’t wait to see where it takes us.
Matt Weisgarber is a dad of two living in Columbus, Ohio. In addition to spending frequent time outside and watching movies with his kids, his favorite pastimes include playing baseball and being active in his local church community. He is a strong advocate for special needs parents everywhere.