Everybody Hurts
(On discovering a child’s illness)


Daddy and Elderchild

It came on slowly, back in May; stress would bring on stomach pain, and it could take hours for her to recover. By last week, my once willowy elderchild had lost 20% of her body weight; she was starving, but she said that she was afraid to eat, because it hurt her. And her doctors agreed: it was time to get some cameras in there, to see if we could figure out what the hell was going on.

It was still dark when we arrived at the hospital this morning. It was bright when we left. It didn’t seem fair.

There are worse things to hear, I know. But when a doctor has to make it a point of turning you away from the bed to tell you that your daughter will still be able to have children, and lead a normal life, and then starts her next sentence with “but…” it’s time to accept the fact that things have changed forever.

The tentative diagnosis is an autoimmune disease; it has a name, and its own foundation. Her medical team is sure enough for now to be putting her on pills, and seem carelessly unaware of how much pain they’re threatening her with when they suggest she can begin taking them four times a day, with food, right away. And although we’ve been told that she’ll be able to manage her condition with a combination of careful dietary habits and medication, if the doctor confirms her initial diagnosis when test results return on Wednesday, my daughter will spend the rest of her life teetering on the edge of pain.

My first child has been lucky enough to live to her eleventh year experiencing personal illness as a temporary state; in her heart and mind, there’s always been time and tides, Mama and medicine to make things better. Now, I see the growing realization in her eyes when she asks for a sandwich, and we suggest soup. I see the way the horror rises, and is quickly swallowed, so it does not come out to haunt her.

I am proud of how brave she has been today, and how prescient. My daughter is like me: we seek to understand the world, and we come to our realizations quickly. Rough seas sparkle on the horizon, and she can see them, too. But like any parent who discovers that their child will be forever hurt, I’m hurt, too.

We give so much to our children. We ply them with care and attention; thoughtful answers; gentleness; structure. We model and talk about the values that are important to us, so that they might develop generosity, curiosity, an appreciation for beauty and joy. We give them the safety of our homes and bodies, and the promise of bottomless, enduring, unconditional love.

But solace is not succor; bad things happen to good people, and there are some things we cannot give. And so I practice the gift of withholding, saving my tears for the other side of the doors and walls that keep me from her side.

I will never again tell her that everything will be all right. But together, we will find other ways to soothe. I will carry her forever. And we will soldier on, determined and courageous, our fingers entwined, and our heads held high.

Everybody Hurts: A Cover Lay Down Mix [zip!]


Category: Mixtapes 24 comments »

24 Responses to “Everybody Hurts
(On discovering a child’s illness)

  1. Steve MC

    I’m so sorry to hear this and know of both her pain and your own.

    The best thing you can both get right now (besides each other and her medicine) is the understanding of those who’ve been in the same place and who can help guide you through it. Seek them out, whether through the foundation or forums.

    Also, her condition reminds me of Beth Orton, who has Crohn’s disease. I found her on this list here.

    http://rateyourmusic.com/list/barlights/musicians_who_suffer_from_crohns_disease_or_ulcerative_colitis/

    I wish your family much strength, patience, wisdom, and love.

  2. Leighton

    Wishing you and your girl the very best during this terrible time

  3. Angi

    Steve and family,as difficult as this is for you, I appreciate that you shared this with us. My heart aches for the pain you are all going through and I too am sending wishes of strength and patience.

  4. Tempest

    I’m sorry your daughter must deal with this sometimes disabling disease. I’m glad that the doctors discovered what is going on so they can treat her and help her live with it. Best wishes.

  5. Karen

    Very sweet post and I am so sorry. The music collection is so touching. We do give so much to our children.

  6. Rolf

    Please give my – a complete stranger’s – kisses to your child and tell her that there are, for sure, a lot of folks out there who will support her in their thoughts.

  7. Niki

    may light be always on your side…
    and make the pain more human-ified.
    our thoughts are with you …..

  8. Simon

    Sincere best wishes to your family for the battles ahead – love will get you through.

  9. GR8FK

    Your post and playlist have really moved me. Wish you and your family the very best.

  10. Christy

    Your blog has been a long time source of joy to me. I wish there was something I could do to return some of that much needed joy to you and your family. I will hold you all in my thoughts.

    “And the songbirds keep singing / like they know the score” — beautiful cover by Rosie.

    May you smile when you hear the birds singing their songs to you…
    ~Christy

  11. Kurt

    Hang in there…..

  12. Ann strickland

    Huge amounts of love and light to your daughter. and you, and your family.

  13. Lewis

    I am so sorry to hear about this. Sending hugs from Georgia.

  14. Private Beach

    May I join those others who appreciate your blog in wishing you and your daughter all the best. I have nephews who suffer from serious food allergies, so I can sense a little of what you are going through.

  15. Kevin

    God bless.

  16. Scott

    After my son was born, because I have such unconditional love for him, anything having to do with children suffering makes me cry.

    I know how much this is affecting you, and how you just want to protect your child.

    From one father to another, I wish you and your family the best.

  17. Josh

    Your blog has long been a favorite and I’ve followed the storms and other hardships while looking to the music you’ve posted. I’m father to a young girl so can all too easily imagine how you and your family are feeling. I wish you all the best.

  18. Anna

    I feel for you, something similar happened to me when my son was 18 months old. I hope I’m not overstepping, but I strongly suggest that she be tested for celiac disease (if she hasn’t already). Doctors tend to ignore it or wave their hands and say it’s not very common, but it is. All the best to you and your little one.

  19. ScratchDad

    Reader of your blog for at least 5 years. Your posts on fatherhood have always been insightful and so obviously full love – often leaving me fighting back tears at my work desk. My oldest, and my only daughter, is a few years younger than your first born, so your ponderings and stories about life and changes in life with her get filed away in this dad’s brain for later use. I really do reflect on them often. Moments when my daughter wants just one more song sung or story told in the dark well after I’m ready to move on to my nightly chores, I make myself remember your nostalgia for these requests now that the big sister in your home puts herself to bed with books. There are more. I don’t know if this can fully explain why I feel such empathy for you in this situation, but I do. And I hope that the process of adjusting to this new challenge goes as well and quickly as it can for everyone in on your family. Best from out West.

  20. Geoviki

    I am truly sorry to hear about your daughter’s illness. I know something of the same feelings because my son was diagnosed at age 10 with type 1 diabetes, another autoimmune disease that shook up his life and ours. Twelve years later I can say that I learned how resilient and adaptable kids can really be and that their parents learn and adapt right along with them. Best wishes to you and your family as you learn a new normal.

  21. kjc

    dude that was beautiful. i don’t have any kids and don’t want any but you don’t need any to feel your pain. I’m sure you’re a great dad.

  22. jeff

    You and your daughter sound stronger than i could ever imagine being. thanks for sharing. Praying for you both.

  23. The Year’s Best Coverfolk, Vol. 1: Tribute Albums and Covers Collections (2013) — Cover Lay Down

    [...] at large, and keeping us from blogging regularly. Of these, sadly, most have been ongoing: the elderchild still struggles to adapt to a life of pain and medicine; my students still struggle to take ownership of their [...]

  24. Lord, Protect My Child: Songs For Our Children, Covered In Folk — Cover Lay Down

    [...] and fatherhood in the face of my older daughter’s encounter with Crohn’s disease [Everybody Hurts: On discovering a child's illness], many of you wrote in to lend support and solace, and I am grateful for the grace, ever thankful [...]


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