Troubles {guest post}

The first time I encountered Matt Mooney was through a YouTube video, 99 balloons, that made me cry for fifteen minutes straight after I had finished watching it. The video went viral, and has had more than 4 million views. It tells the story of Matt’s eldest son, Eliot, who was born with an extra chromosome (Trisomy 18), had many special needs, and lived for just ninety-nine days. (I have put the video at the end of his story – do check it out.) And then I read his book, A Story Unfinished (affiliate link), an exquisitely-written memoir telling how he and his wife made sense of that experience spiritually. I am honoured to have him here to tell a portion of that incredible story:

I’ve made so many people feel awkward since I lost my son.

I think I used to be more couth- maybe even suave- but not anymore.  And I’ve quit with the trying- too tired from years of grief now to catch back up to normal.

I’m the guy who stops conversations at parties when the other asks what seemed a simple enough question about kids.


And here’s what never ceases to amaze me.  It’s the Christians that are most dumbfounded by my loss, by my grief and by my painful present reality.  I am surrounded by so many that are accustomed to our story- those who miss Eliot along with us, but when I push outside the boundaries of those closest to me, I am reminded that those who have remained closest are the rarest of kind indeed.  Because outside the circle of our dearest friends lies another group of people that the friends have insulated me from.


In the fable of my loss, I have labeled this most diminutive of people as the “never worries”.  They are a society of smiles.  Feasters upon cornucopias of calmness.  They are the friends of Job.  And I cannot tell if they actually have never been through something painful (and I really do hope this for them) or if they have known ache but feel pressure to conform to the status quo by bringing a casserole and a grin and a shout in unison of their favorite go-to verse for pain and suffering.


And I can forgive them.  I am days away from the calendar telling me that it has been 7 years since I held him.  It has taken ample work in each and every minute of my loss, but I am at a place that I no longer want to choke the little necks of these people.  I can now see that I was one of them.  It’s the worst parts of me that I always hate in others.  I avoided pain and sought happiness.  I believed that God’s will aligned with my best-case scenario of what my life looked like.  I scurried past the verses on suffering as fast as I scurried past those who suffered.  I had answers for the pain of others but little time to sit and listen.


I’ve ventured into this strange club of folks whom life has stuck it to.  A community of brokenness that we all avoid like the plague.  We are “them”- the ones whose stories make others cringe.  But I see now that, given enough days, we are all “them”.  Every life on this earth will know depths of pain.  It is merely a matter of time.  If you do not agree or do not want to believe this, then just know that I don’t want to be the one who tells you otherwise.  I prefer it when kids believe in Santa.


In this world you will have trouble.

– Jesus


Though I have moved past most of my unhealthy feelings for Christians who cannot account for pain, a certain portion of frustration has grown at an increasing rate at the same time.  Because pain has been the tool to bring me closer to a God that I no longer pretend to understand.  This where my leftover resentment still resides.  And though I would like us all to call it a righteous anger- admittedly, I cannot be sure.


But dear Christians, when we rob the faith of all pain and tell others instead that Jesus wants them to have bigger cars…we rob the gospel of its power.  Because I have lost my son and I miss him every day.  And seven years hasn’t begun to heal the hurt of not being able to hold him.  And Jesus is still enough.  My God has been near in it all.  Not giving me what I wanted, but never leaving me.  His promises endure. His goodness is evident.  And that is the gospel.


In this world you will have trouble. 

But take heart! I have overcome the world.



matt mooneyMatthew Lyle Mooney is the author of A Story Unfinished.  He and his wife Ginny founded 99 Balloons, an organization that engages children with disability locally and globally. Many know him through the story of his son, Eliot- whose 99 days on this earth were commemorated with 99 balloons.  He lives in Fayetteville, Arkansas, where he busies himself raising Eliot’s siblings- Hazel, Anders and Lena. You can follow the story at his blog –  the atypical life



Over to you:

  • Have you ever had an experience where it felt like Christians were ‘Job’s friends’, and didn’t understand what you were going through?

Watch Eliot’s story:

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15 Responses to Troubles {guest post}

  1. Lynn Kauppi 16th October, 2013 at 3:29 am #

    This sort of situation is one of many reasons that I no longer identify with the evangelical community. I suffer from chronic depression but was not diagnosed in college. My “friends” told me: “Just smile.” Or the endless repetitions of “Be happy. Jesus loves you.” These people need to read Jeremiah, Lamentations, Ezekiel, Job, the Gospels (especially the Passion Narrative), and Paul closely.
    I have firmly and completely returned to my own tradition (Lutheranism) where we learn that Christ, and thus God, suffers with us and that while we are not to seek suffering for its own sake nor for our own egos. Instead we are to enter into the suffering that we are given and use it to love our neighbor as we love ourselves.
    Matthew, my son is still alive. But everyday I miss and grieve for both my Dad and our dog, who was one of my closest friends.

    Grace and peace


  2. Stephanie 15th October, 2013 at 11:51 pm #

    I am so sorry for the loss of your son.

    As one who walks through the valley of pain every day, I am quite familiar with “Job’s friends”, though until you brought that out here, I never quite knew what to call it.

    I had a dear friend who watched her husband struggle with his last breaths this past week. Her grief is raw and real, and yet I see Job’s friends writing such silly things on her facebook page it makes me cringe. She just needs a hug and someone to wipe her tears, not some trite quotes, Scripture verses that do not apply, and meaningless words from those who don’t understand her pain.

    May I just be glad I have been in this valley and can walk with her while in it too, and while suffering is hard, being able to have compassion and understanding for those who do suffer is truly a gift.

    Thank you for this beautiful post!

  3. Mark Allman 15th October, 2013 at 9:05 pm #


    I never want to “get over” someone I lose. Love will not let me. The pain of loss to me is a good pain for it calls to heart the depth of love for that which is lost. I shall never get over those I love….. regardless where they reside.

    “Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” —- Kahil Gibran

    • Ragan Maxwell 24th October, 2013 at 4:40 am #

      I very much appreciate how you stated this. This is exactly how I have felt since I lost my husband. People have been very uncomfortable talking about him with me, seemingly for fear of how I might react. I want to be able to talk about him and yeah, I might cry, but that is ok!! I welcome it. People have told me that eventually you will get over it and move on. I don’t want to get over it!! I want to get through it and move differently. I say move differently because, yes, life does go on, but it is the same life, it just goes on in a different way.

  4. Janice 15th October, 2013 at 3:14 pm #

    Matt, tomorrow my Jack would have turned 6. He lived 63 days and died from a heart defect. Your story is so familiar from the stopping of conversations to the wanting to strangle people quipping verses or platitudes to the knowing that it was me before Jack doing the exact same thing. I know i used to equate God’s goodness with my comfort. And now his goodness is the one thing to cling to.

    If you’d asked me 7 years ago, and I’d been completely honest, I would have said I frankly wasn’t super excited about heaven. But no longer. Oh, for the place with no more tears or sickness or dying. And the place where one of my babies is. Thank God for heaven.

    Tanya – did you know today is Pregnancy and Infant Loss Remembrance Day in the US? This was a timely post. Thank you, as always, for making a voice for suffering that is surrounded by the goodness and grace of God. (I’m just remembering that it was through your series on Job that I found you here. And I’m so glad I did!)

    • Matthew 15th October, 2013 at 3:38 pm #


      I am so sorry to hear of your loss. Jack sounds like he managed to change you in unspeakable ways as did our Eliot. I love your description of longing for heaven. It is so true. It easy to be comfortable here until this world is no longer what it once was.

      • lulu 15th February, 2015 at 10:24 pm #

        Dear Matthew
        I’m 13 and I lost my brother Elijah 8 years ago ten days before my 5th birthday. Its going on 9 years and it stings just as much as it did 8 years ago. I never met Elijah. I didn’t get to hold him, meet him , see his first steps, hear his first word or see his first smile. When people ask me how many siblings I have I am so quick to say 3 brothers because I forget I have a fourth. He didn’t deserve to die he doesn’t deserve me forgetting him. I don’t know how you can miss something you never had but I do so much every day especially coming up to my birthday. I am so sorry about your Eliot but I would like to think Elijah and Eliot are up in heaven playing together and that they are happy and at rest with God.

  5. Jen 15th October, 2013 at 9:08 am #

    thank you so much for being so generous with your pain. I’m so grateful that God has given you such good friends to love you well, and so hurt for you for all the glib answers and the people who love themselves and their own comfort more than they loved you.

    the date you posted this is my brothers birthday. we lost him 10 years ago this year and I still miss him. he was born with many health difficulties too although we were blessed with many more days with him. I know that he is well now and with his Lord.

    many people crossed the street when they saw us, 2 of my oldest friends never called from that day to this and many Christians were quick to tell us that it was God’s will and probably for the best – God managed to keep me from causing them any serious harm (!) but it’s sad that people – particularly Gods people – so often seem so unable to cope with the reality of life and pain and our very present need for Christ.

    Thank you again – we will see them again soon xx

    • Matthew 15th October, 2013 at 3:35 pm #


      I so appreciate your telling about your brother and of the reactions of others to your reality. I am sorry to hear that some headed out. I do hope others stayed put and have walked with you….I have these folks and I am so grateful for them.

      I agree that it is sad….mostly, because they miss out on the blessing and we miss out on their presence in our pain.

  6. Alia Joy 15th October, 2013 at 8:43 am #

    Thank you so much for sharing your story here. I have dear friends whose daughter Amaya was born with trisomy 18 and went to be with the Lord shortly after her birth. To see the hand of God in the midst of their deepest pain was something to behold. I am better for knowing a God who can handle the suffering of this world even when we have no understanding but that He is good.

    • Matthew 15th October, 2013 at 3:30 pm #


      Thanks for telling me of Amaya…God has been nearest through some amazing children we have met along the way. Honored to know of her.

  7. Helen 15th October, 2013 at 8:39 am #

    No words, just prayers that we will always be what others need. x


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