What follows are but one Christian's reflections on our first Easter with Duchenne. I'm not out to convert anybody, but only to share with those who share our beliefs.
This Sunday will be our first Easter with Duchenne. Not that its ugly face wasn't there before; we just didn't realize it.
Since last Easter, my wife and I have experienced a great deal. Bitter tears, dark nights of the soul, doubts, desperate prayers, DNA tests, diagnosis, healthcare shuffling, speculations on home additions, delivering painful news, courage, joy, faith, hope, love. We've witnessed the kindness of strangers and the profound strength of a child who is on steroids but will never lift weights or play football. We've traveled several times from our little farmhouse to the big city children's hospital. We've learned words like "exon skipping" and "dystrophin" and "stop codon." We've learned names like Prosena and Acceleron, Pat Furlong and Paul and Debra Miller. We've lurked through pages of discussions on the PPMD website, finding hope and comfort, and feeling admiration for so many good people who have long been fighting a battle we are just now joining. We've even rooted for a Packer, even though we are die-hard Bear fans.
You'd think that, since we already have a daughter with Type 1 diabetes, we would have recognized something else already. And it's not as though we haven't fretted over looking both ways or jumping in the pool or any other danger that lurks out there. But it was only in this past year that it really sank in: Our children are mortal. We pray hopefully every day for a cure; but even if it comes, our sweet boy is guaranteed no tomorrows, and neither are the rest of our children.
But not just our children. Meeting Duchenne has opened our eyes like never before to the suffering of others, the fragile mortality of kids all around us who struggle each day. We have looked too long at our own little world, at our own petty needs, and Duchenne has changed us. Is changing us.
So this Easter, we're thinking in new ways on two things. First is Our Lord's suffering for us. "One will scarcely die for a righteous person," writes St. Paul, "though perhaps for a good person one would dare even to die." Before Duchenne, I didn't really see the suffering of good people the way I do now. With Duchenne in my life, I want to do more for those innocent children who don't deserve a debilitating disease. But the Good Friday glory belongs to Christ, who died not for the righteous, but for sinners like me. Sinners who fret over televisions and vacations and silly things while boys are struggling to walk or to breathe. They that are well need not a physician, but they that are sick . . .
The second is the reason for Easter itself. My mortal children may precede me in death, and if that happens, my life will never be the same. But that is the very reason why Christ rose from the dead: to conquer death not only for me and my wife but for my children—for Carl, who has Duchenne, and for all boys with Duchenne. For anyone who faces death, there is hope beyond a cure.
We've never known pain like we've known it this past year, having met Duchenne. I look forward to the day when the cure comes and we can kick that monster out of our house for good. Duchenne is evil, and we hate it. But through what was meant for evil, God is doing good. And because of that, we have joy like we've never had before. Easter will never be the same, and that's not all bad. And I pray that every boy with Duchenne, and every family that lives with it, will know that peace and joy this Easter. Christ is risen!