Sunday, July 4, 2010


There are so many surreal things about having a child with cancer. One of them is that suddenly, after not knowing anyone who had a child with a life-threatening disease, those families are everywhere. The entire oncology inpatient floor, in your same stinking boat. The outpatient housing. The clinic population. It's very easy to look around and think, "Well, I know my kid has an aggressive cancer with only a 25% chance of survival, but at least we're not THAT family."

Horror, fear, sadness, central lines, infections, bald heads become the norm. Most families discuss schools, teachers, sports, while your family chats about chemo, fevers, and MRIs at the clinic. You're not the only one.

As "real life" has enveloped us again, a welcome thing to be enveloped by, we are the only ones. While I am careful to avoid the "Why me?" line of questioning, knowing that it has no acceptable answer, I am having more and more trouble not feeling really singled out. This time of year is healthy well child check after healthy well child check. Kids at the pool. The neighborhood kids out in the yard. I look at all those kids, at all those parents, and I can't help but let a little bit of "why not them?" creep in.

I have particular trouble with a family we know whose youngest had cancer. He was being treated roughly at the same time as Henry, with a much more curable leukemia. He's a year older than Henry would have been, and doing great. He was at soccer tryouts this year, running, giggling, pestering his mother for candy. It's really hard for me to act normally around him. I certainly don't wish anything but the best for him, for his family, and I'm glad he's doing so well. But envy seeps into me as I look at him...why isn't Henry also running around, giggling, rolling in the grass?

This isn't the envy for your best friend's cute new shoes. It sours my emotions. It eats at me.

Yesterday I went walking, and listened to a podcast of Terri Gross' Fresh Air. I happened upon the story without knowing what it was about. She was interviewing Dan Gottlieb, a paraplegic psychologist, about his life, and his books (though she pretty much ignored the books and focused on him). I really enjoyed the interview. Mr. Gottlieb has looked death in the eye, looked grief and loss in the eye, and come out OK on the other side. Better than OK, he's good with it. He spoke for a while on the subject of envy, and says he envies no one. He suffers greatly and often, but envies no one.

I'm apparently not there yet.


bostongirl said...

Feeling for you, Dr. Smak. I wish you had your beautiful boy rolling in the grass, too. It's so terribly hard to NOT be envious. I've failed miserably at this, but I like to think that I am trying to improve. It is a journey for me.

socks said...

I cried as I shared this post with my husband.
He commented that "you will never be there". The perspective is not the same when you are the victim, as it is when your loved one (child) is the victim.

Jen said...

I love my friends' kids, and my nieces and nephews and young cousins and most kids that I meet day to day. I wouldn't wish any of them harm in the slightest degree.

And I still feel ill at times that my kids are the ones who have dealt with preemie issues, then autism, then cancer. I wouldn't wish it on any other families and am very glad that the people close to me have healthy families, but I do get pains that are almost nauseating at times because I wish so much that my kids hadn't been faced with everything that they have. It's not exactly jealous- just a 'why my kids?'

I guess that I'm not there yet either.

rlbates said...

I caught that interview too, Dr Smak. I don't know how he manages the no envy part. I certainly think I would "envy" anyone who could still walk, run, and dance.

I have often with great gratitude wondered how my family (my mom had eight children) managed to escape such tragedies. We had the childhood illness (chickenpox, mumps, measles, etc) and some broken bones, but no major illness. A car crash did take my older brother when he was 28, but we escaped the childhood cancers, etc as have (so far) my nieces and nephews.

I marvel at that and am grateful.

...tom... said...


"I'm apparently not there yet."


It is important to remember that, at the time of the interview, Gottlieb had been living with his condition for twenty five-plus years.

His education and training also have put him in a unique place to experience, understand, and 'work through' his own loss.

Gottlieb said...
"I think though, all of us ... have been hit with a big, black thing coming out of the sky."

I think mourning the loss of one's own powers, the loss of what we once had would be much easier to deal with than the loss of what we expected might or should have been.

The loss of the future seems much more painful than the loss of the past. If that makes sense...

Anyway, rambling now. Thanks, as always, for allowing us to 'eavesdrop' on your musings.