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!

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Comment by Tammy Angel on June 14, 2011 at 5:33pm

Aaron, thank you for your words.  I have been down the road each and every one who has a child with duchenne's is l travelling, and I must say, take time, each of you,  to enjoy your sons.  Enjoy everything you do with them, make the best of every situation.  Make certain to let them know they are not burdons, but blessings.  Make sure you are honest with them every step of the way.  Make sure they are involved in the decisions regarding their care, make sure they understand that it doesn't really matter what physical things they are unable to do, only what they are able to accomplish.  Who cares if you can't run a marathon?  Who cares if you can't play football?  Who cares if you can't ride a bike?  What can you do?  Whatever it is, do it the the absolute best of your ability!  Make sure they know every person they meet they will leave an impression.  It's up to them to decide if it will be a good impression or a bad one.  My oldest son passed away at the age of 20, having a blood clot go to his lung.  He did not suffer, thank God, but he did leave a legacy behind.  There were over 700 people at his funeral, and is missed daily.  Jeremy was the same...also passing at the age of 20.  I love them so much, and miss them, but oh, the memories I have...God Bless you, each and every one...

Comment by jessica santini on April 25, 2011 at 12:21am
wow thank you for those amazing words.
Comment by Lorrie Wolf on April 23, 2011 at 12:21am
Thank you, Dear.  You always know how to say what I'm feeling. Love you!
Comment by Aaron Wolf on April 22, 2011 at 10:35pm

Thank you all.  I'm honored that Pat read my post.  God bless you, warrior for our boys!

 

Yes, Veronica!  Thank you!


Staff
Comment by Pat Furlong on April 22, 2011 at 4:25pm

Dear Aaron,
Thank you for this beautiful blog. 

Warmest regards,

Pat

Comment by Veronica E. on April 22, 2011 at 10:06am

Would it be OK with you if I share this with my Facebook friends?

 

Comment by Veronica E. on April 22, 2011 at 10:05am

Aaron, bless you for sharing your thoughts with us. You have been able to say so elequently what I've been thinking but didn't have the skills to express. In the almost three years since Max's diagnosis, I have struggled with my faith and what I always believed. In this Easter season, a desire has come to become closer to God and try to come to peace with Max's diagnosis. I was particularly inspired when you wrote, "For anyone who faces death, there is hope beyond a cure." Thank you so much!

 

Comment by Susan Rathfelder on April 21, 2011 at 10:30pm
Thank you for sharing. Since Jon's diagnosis almost 11 years I have found that my faith is much stronger and deeper than I ever imagined.
Comment by Catherine Collins on April 21, 2011 at 9:56pm
This is our first Easter with Duchenne too. You are right -  it will never be the same again but that it's not all bad. We missed so much of life in the cocoon of good health. Here's hoping we can keep living in color instead of black and white. I must admit I find it exhausting and exhilarating every.
Comment by Jason G on April 21, 2011 at 9:29pm
yes!  :)

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