On Father’s Day, I’ll be preparing for another ‘New Normal’
Life of a dad with identical twins who have unique form of muscular dystrophy
Father’s Day is here, and although we’ve all been bombarded by advertisements about sales and suggestions for “what to get Dad for Father’s Day,” I’d rather focus on what I get the rest of the year.
I don’t mean a new shirt or an electric screwdriver. I mean the intangibles, the things I experience and learn. As a dad of children with special medical needs, I’ve learned not to be afraid of the next “new normal,” whatever that may be.
Our 7-year-old boys, William and John-Raven, are identical twins with a unique form of muscular dystrophy. As identical twins, they inherited the same genetic variations, so their neurological development has been almost the same as well. They are non-verbal, non-mobile and tube fed. To go into the boys’ full history would take much more than a blog entry, but suffice it to say, they’ve logged quite a few surgeries and hospital stays in their short lives. In the last nine months alone, we’ve spent almost 90 days inpatient at Cook Children’s. I’m writing this from William’s room right now, actually, having been here over a month. During this stay, William got a tracheostomy, so we’re getting thoroughly educated on the ins and outs (literally) of trach care.
From before the boys were born, we’ve had to learn to adapt to new developments that most parents don’t encounter. The kinds of things that mean you have to shuffle significant parts of your life (both emotional and physical) to make room for new day-to-day processes and situations. From the very first sonogram, when we found out we were having twins and that they might be monoamniotic (sharing the same amniotic sac, which is risky for the fetuses), we learned not to get too comfortable. As it turned out, they weren’t monoamniotic, but they did have hydrocephalus (excessive fluid buildup in the brain).
They received shunts shortly after being born to treat the fluid buildup in their brains. They were hospitalized with aspiration pneumonia and received feeding tubes a year later. In the coming years, more things would change. They had corrective eye surgeries. They had their tonsils and adenoids removed. They contracted RSV and went to the Cook Children’s PICU, where both boys had to be intubated, and John-Raven spent several days on life support. Eventually, we received the genetic results that informed us our boys have muscular dystrophy. We’ve had to make numerous 911 calls and taken quite a few ambulance rides. These experiences have taught us to keep ourselves always prepared for a “new normal.”
I take an active role in the care of my kids, and that applies equally to when they’re home and relatively healthy as it does to when they’re at the medical center. For that reason, I am a big fan of the family-centered care approach at Cook Children’s.
I appreciate the way the professionals here involve me in the decisions that are made about the plan of care for my children. I wouldn’t have it any other way. With all of our stays, Cook Children’s has basically been our home-away-from-home. Certainly, we wish our boys did not have to be hospitalized so frequently and for such prolonged periods, but if they have to be, Cook Children’s is our preference. Being in a familiar place with people we trust helps us deal with the challenges that occur so often for a family like ours.
I’m also a member of one of the Family Advisory Councils, and in that role, I get to be more directly involved and improve the connections between the medical center and the families served by it. I think of that as my opportunity to give back and participate in a different way as a parent-partner at the hospital.
I think of Father’s Day as a time to celebrate the joys and opportunities and adventures I’ve had as a father, even the things that are difficult. Thanks to the guidance of the professionals in the Transitional Care Unit, my wife and I have finished our tracheostomy training so that we’ll be better prepared to care for William and his recently acquired trach. It’s just a matter of time before we’re back home again and adapting to our new situation. It isn’t easy, but to me, being a father means celebrating the little wins and making sure I’m ready for the next new normal, regardless of what that is.
About the author
Matthew Plummer Cobb is the father of two identical twins, William and John-Raven, and a member of one of Cook Children's Family Advisory Councils.