Friday, June 4, 2010

The circles of parent hell

I've had a lot of sad thoughts these past few days, capped by Jeri's mention yesterday that she had a daughter, Amber, who had spina bifida and died of a respiratory infection. This week I also learned that Mama Pundit blogger Katie Granju had lost her teenage son. Gazing at photos of Henry Louis—so beautiful, spirited and full of life—was painful.

I first read about what happened on Her Bad Mother, Catherine's incredible blog. She's also dealing with a family tragedy: Her sister's son, Tanner, is dying of Duchenne Muscular Dystrophy (DMD). Kristen over at Shredheads started a cool campaign to help raise awareness about DMD, Tutus for Tanner; please check it out.

When I hear these stories I grieve for the children, but I'm haunted by thoughts of what their parents are going through. They knock any pity I have about my own life situation right out of me. Sometimes, you get so distraught by the challenges your sweet child faces and the drama of his disabilities that you forget there are far, far worse fates. Sometimes, when you're the only parent in your group of friends who has a kid with disabilities, you feel as if you were the only family struck by lightening, that "Why us?" question seared into your heart. Sometimes, when you sense people feeling sorry for you, you sink into the mire yourself.

Perhaps I do occupy a certain circle of parent hell because of Max's stroke and subsequent disabilities, like those circles of suffering I read about in Dante's Inferno as a college freshman. But certainly, parents whose children have passed away or whose children are terminally ill occupy far deeper circles of parent hell.

I used to volunteer in the pediatric playroom at Memorial Sloan-Kettering, a hospital that treats cancer patients. The kids there behaved like kids; they may have been gaunt, bald and hooked up to IVs, but they still wanted to play games, color and just be kids. It was the parents who'd sadden me. They were the ones who looked like the walking dead.

There are other circles of parent hell, in my mind. There is one inhabited by parents whose children have gone missing. And there is one filled with parents whose children have been abused. And there is one with parents whose babies have been stillborn. I think about these circles of parent hell whenever I hear a horrible story about a child.

I have no words left tonight, just thoughts of Amber, Henry Louis and Tanner, and their parents.



  1. I agree...there IS a parent hell. I am in one of the circles myself.My 14 year old son has autism, ADHD and some unidentified mood disorder. We have been trying for years to find the right medication cocktail to allow him to function in society. Yet I know that my hell is nothing next to the friend with 2 children with autism, or the one with a child who has CP, is vent dependent, and possibly blind and deaf.

    I don't know at what point Tanner is in his disease, but I had a friend who had DMD. One day he told me a little about what his parents had been told...

    when he was first diagnosed, they were told he wouldn't make it to age 10. When he made it to 10 they told his parents there was no way he would live to see 16. When he was 17 he was put on a vent after a cold caused a mucus plug he couldn't cough up.

    I met Robbie when he was 26. Several years later he finally got his 24 hour nursing so he could go to college. We lost track of each other after I had 2 kids. One day my mother called and told me he had died and there was a story about him in the paper--he was in his early 30's .

  2. Thank you so much for posting about Henry Ellen. I never met Katie or Henry, but we travel in a lot of the same circles, and after reading her blog and finding out he died my heart was ripped from my chest. I cannot even begin to imagine her pain. Losing one of my kids is my worst ever fear.

    Your post is very much like what mine was going to be for today. I have an old high school acquaintance losing a daughter to brain cancer, and a cousin who just gave birth to a 25 week little girl who is really struggling...after 8 years of infertility. But I am going to try and do something a bit lighter. Find some light in all this dark around me.

    My 'problems' are nothing compared to most. I have been given a reality check slap up side the head. I am going to go love on my kids now!

  3. Dammit.

    So glad I don't believe in Hell.

    Off to visit and grieve with these parents. I worked with a Mother to a DMD boy... it sucks the big one.

    Dammit again.

  4. That pit of pity is so easy to slip into. I used to question myself the same way. But it only took a brief elevator ride to the hemacology floor to see how graced i am. Both of my girls are thriving, despite one being challenged.

    My brother lost a two year old healthy little girl three years ago now in a devastating accident. His hell still persists. I pray for him and I will add Katie and Tanner to my prayers as well.

  5. we will say a prayer for these families.
    We have had our share of close calls with Junior and I am truly blessed that he is still here with me. two of his little blog buddies earned their wings this week. certainly reminds me to be thankful for everyday I have with my boy.

  6. I have a 4 year old son with Spina Bifida, his name is Caleb. Anytime I hear about someone with SB dying it makes me feel sick. I do not want to outlive my kids. I can think of nothing worse than losing a child.

  7. Hearing about Henry Louis saddened me too. Such a terrible loss.

  8. I cannot think of anything more devastating than losing a child. It just rips my heart out to think of it. It is far too easy for us to slip into a pity party for ourselves and our situation (whatever it may be).

    This post is a good reminder, that we need to focus on the things that we have to be thankful for. There will always be someone who has a better life than us, but there will always be someone who has far greater struggles too. It is all a matter of perspective.


  9. Yep--no matter how tough we think we have it (notwithstanding that the occasional pity parties are understandable, and allowed), there's always someone for whom life REALLY, TOTALLY sucks. We've had death in the family, absolutely asinine poverty to the point of desperation, illness, bills up the ying-yang, but I make a habit out of reminding myself that we have dealt with the tragedies and gotten through the tough times, and we're totally OK now. We've got my folks and my brothers and sisters and all of our other cousins/aunts/uncles to lean on, and even though we'll never be rich unless I start buying lotto tickets (eh, wealth is for wusses!!!) , life is pretty damn good.

    When I hear about a child with terminal illness, it breaks my heart, for both the little one and their parents. I also have a lot of admiration for parents with kids who have major mobility issues--I can't imagine the hell some parents go through every day simply when it comes to CAREGIVING--particularly as their children become adults and it's more difficult to care for them round-the-clock (I did a brief ten month stint working in a nursing home before I got the job I have now, and all that lifting--with lots of HELP, too-- wasn't easy on my back--makes waitressing look like a day at the beach). I so admire their resolve/fortitude/determination, each and every day, with no let-up, and feel like they deserve a reward or something--I think this is because I don't know how good I'd be at it, dealing with that reality day in/day out. Sprints are easy, it's marathons that really test the mettle--that's how I see it, anyway (notwithstanding the metaphor, the only places I run are at work and to the bathroom!).

    I also wonder how the hell people managed before the internet! Having children with special needs can be isolating, particularly in a small town where you stick out and can't go anywhere/do anything without everyone noticing and having something to say, but the computer helps us realize we're not alone--it's so helpful! If I didn't have to work I'd probably be on it a lot more. I don't know if that's a good thing or not!

  10. My brother passed away a few years ago. It forever changed my parents. Whenever I'm feeling sorry for myself for having a kid with autism, I think of him and know things could be much, much worse. I also remember his grace and strength through his illness, and try to make him proud of the way I am with my own children.

    Thank you for reminding us how lucky we are.

  11. I so sometimes feel like I am in Parent Hell when I'm dealing with CP/stroke/special needs garbage. However, at the end of the day, I'm one lucky mom.
    Monkey Boy was supposed to be a big brother two and a half years ago. Unfortunately, the baby we so badly wanted passed away during my second trimester. It still feels like a piece of our family is missing. And so, while the special needs world does get overwhelming at times, I do try to stop and remind myself that it's not so bad. After all, Monkey is here - alive and here to here for me to cuddle every day. As long as I have that, I can deal with everything else.

  12. So so sad to read about those children who have died or are terminally ill or are missing. As for parent hell, even one of my best friends recently commented that she thought I had a 'terrible life'! I was really surprised that it looked so bad from the outside. I think that you are so right, Ellen, no matter what we have to deal with, our children are alive and with us, and that beats everything!

  13. Thank you for the perspective! I am going to check out the links.

  14. Oh, Ellen. I will visit the sites. And, I am praying for all of these parents.

  15. I lost my step-daughter in 2001 to osteogenesis imperfecta. I watched as my husband grieved for his only child. Those types of tragedies really puts things in perspective. My 6 year old has had 11 surgeries since she was born. She has a rare genetic disorder, but mentally, she is perfect. We have just spent the last 2 months playing in a challenger division of little league baseball, and it helped put my/our life in perspective. My child seemed almost normal compared to the difficulties some of the others have to face. I'm going to miss our little support group we had on Wednesday evening practices, and can't wait for the next season to begin. My thoughts and prayers are with the families who have lost their children.

  16. ellen, i can't stop reading your blog. you are an AMAZING writer.

    i do this constantly - think of other parents' hell. it sounds awful but it makes me feel better because i feel less alone. right now, my son is 4 months old and suffered a stroke before birth. i don't know what will happen to him but i sit around and torture myself with horrible thoughts. i picture my friends feeling sorry for us. people tell me "enjoy your baby, you won't get this time back" but i NEVER want this time back. i never want to go through this infancy stage again because it is AWFUL. i am jealous of all my friends & relatives with their perfect healthy kids. some have 5 kids and they're all healthy. what kind of luck did i end up with?! so then i think to myself, you know...things could be worse. the other day, i was flipping channels and saw "america's most wanted" and i thought of john walsh's story. his son adam was murdered when he was 6, all they ever found was his head. ok now THAT is worse. sometimes i'm really crazy and think to myself, "would it have been better if my child was born neurologically perfect but later developed leukemia?" or "would it have been better if my child was perfect and healthy for years but then died at 18 yrs old?" sometimes i actually think i'd feel better if the cancer thing happened only because then i wouldn't blame myself. that's something that happens. the stroke happened in-utero so i can't stop blaming myself. it KILLS me.
    i guess i should be thankful that my son is doing ok right now. i just can't help feeling all this self-pity. i am so miserable.


Thanks for sharing!

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