My firstborn child just celebrated his first month of life. A few days after his birth, my wife and I weren’t sure what that life would look like. In many ways we still don’t know.
My son Edan was born with a gap in his DNA. A very important gene called SMN1 is missing, giving him a rare genetic disease called Spinal Muscular Atrophy (SMA). A statewide newborn screening caught the anomaly, and five days after birth our doctor called us with the news. We had never heard of this disease before, yet both my wife and I were recessive carriers.
His little body doesn’t have what it needs to keep his motor neurons alive. A few years ago this would have meant that his expected life span would be somewhere shy of 20 years. 90% of people with SMA never walk and don’t live into adulthood, with 50-60% not expected to live past 2. Just a few years ago, our doctor’s advice would have been to cherish whatever time we had before Edan’s chest muscles would no longer have to power to make him breathe and he would die.
Today, because we live in one of only 6 states that are currently screening for this disease, getting this news means that as soon as possible after birth he was started on one of the most expensive drugs in the world. It’s being injected directly into his spine every 2 weeks via a spinal tap. It’s the first drug ever shown to be effective against SMA and was approved by the FDA less than 2 years ago.
Learning that your child has a rare genetic disease that you’ve never heard of before is an experience that I wouldn’t wish on anybody. It takes your healthy child and turns him into a ticking time bomb of grief. Each day I have to wonder, “Will this be the day he starts to weaken? Will this be the day the medicine doesn’t work and his motor neurons begin to die?” Doubt and fear are constant companions, because while getting him treatment has shrunk them, they will never completely go away. Hopes and dreams for the future are arrested. The future becomes horrifyingly uncertain.
I had dreamed of doing so much with him. I had dreamed of camping, hiking, and playing football. Now it will be a miracle if my son even walks.
In my darker moments my mind dwells on these things. Thankfully those moments don’t seem to last. He’s still a crazy cute and awesome little newborn boy who keeps me on my toes and my mind on the present. “Don’t worry about tomorrow. Tomorrow will worry about itself. Today’s troubles are enough for today.” When I’m present in the present, the weight of this trouble doesn’t seem so heavy, and I can see the multitude of hopes and dreams that have not been arrested by disease.
One such dream is my dream of introducing my son to the wonders of tabletop roleplaying games like Dungeons & Dragons. This is one game that doesn’t depend on how mobile his body is, only how sharp his mind and how beautiful his imagination. I am thankful for a game that isn’t limited by physical ability. I’m thankful for a vehicle that invites him to imagine himself however he pleases, with or without disability and disease. I’m thankful for this game that gives him an arena where he will not be limited, perhaps the only such arena he will find in life.
It is a gift and a blessing.
A Hard Left
Being a person of faith in Jesus Christ has given me a strong foundation in this difficult time, and believe it or not, I think being a Dungeon Master has too. I remember the first time my players really threw me for a loop. I had prepared a multi-layered mystery in the port town of Tarsis, complete with warring city factions and a graveyard that refused to keep its dead within its gates. I was already laying groundwork for the naval adventures that were going to come after that when the party of PCs surprised me by taking a hard left turn. They left the town as quickly as they had entered and struck off into the midst of a vast and unmapped forest.
In that moment I had to improvise. I had to set aside my plans for how things were going to go and be in the moment with my players. I had to listen to them and respond to them and help them discover what it was that they were looking for.
Having my son get this diagnosis is a lot like being the Dungeon Master for a party that takes a hard left when everything you had planned was to the right. I’ve had to set aside my plans for how things were going to go. I’ve had to find ways to just be in the moment with him and my wife. As he continues to grow I will need to listen to him and respond to him and help him discover whatever it is that he is looking for in life. It might be different than what I had in mind.
The skills that you hone when you are playing a game like Dungeons & Dragons have proven valuable to me time and time again. There is so much more to this beautiful game than meets the eye.
5 thoughts on “My Firstborn Child”
God bless and keep your family as you navigate this difficult journey. You are surrounded by a faith community lifting your family up in prayer each day. How fortunate to live when and where Edan’s diagnosis and treatment are being done. Also, fortunate for Edan to have parents and family who can be proactive in his treatment. Best of all is the love which surrounds all of you.
We will keep you in our prayers! What a beautiful baby boy with such great parents!
Thank you for sharing about your beautiful baby boy, and about Dungeons and Dragons. Sending love and hugs to all 3 of you! I hope to see you and meet little Edan sometime soon. Please let me know when you are in Omaha. Patti
Rory and Carolyn..you are awesome parents and Edan is such a joy! The few days I spent in Minnesota were not enough. Edan is special. Play and enjoy him, enrich all of his senses! Babies are sponges , absorbing stimuli and shaping their brains. I have so much hope for him, for all the new medication, new gene therapy being developed. Positive thinking..I know it will work.
I can’t wait to see him again! Wish I was closer!
Love you !
It is hard. It never quite gets easier, just different, as having a medically fragile child redefines your world. Being “good” is suddenly more than we ever believed possible, because God has entrusted you with something awesome in the most literal sense, being both terrible and wonderful. Life’s trivialities finally seem trivial. Best wishes to you and your family, and may God’s blessing be upon you.