Saturday, October 31, 2009

Standing water

Several weeks ago I mentioned that I was doing much better. Grief cycles seem so cyclic, I was a little afraid that I was just in the middle of a few good weeks, but the pattern has persisted, for which I am thankful. For a long while, the waves of grief would hit, unpredictably, intense, for hours or days, so intense that it almost translated into a physical pain. That doesn't seem to happen often anymore, and when it does, I don't feel so lost in them that I can't find my way out. The feeling is familiar, and while not pleasant is welcome as a part of me, a part of my loss of Henry.

I feel much more myself, with all of my assets and handicaps intact. I'm back to forgetting friends' birthdays (never really stopped that, but I had an excuse), avoiding exercise, actually caring enough about work to let it stress me out. Regular life stuff.

But it feels as if I am walking in three inches of standing water. It's not harder than it is for everyone. I'm not debilitated. In some ways, especially parenting, I think I'm doing a better job than I've ever done. But every time I move, every step I take, every thought I have is followed by sadness that he's gone.

I wished and wished for some relief when the grief was so intense. Sometimes I did not feel like I had the strength to carry it much further.

But I don't honestly know if this stage will ever pass. If it doesn't, that's ok. This is something I could do the rest of my life, hearing the splash, watching the ripples every time I move. Maybe I don't want it to go away?

Tuesday, October 20, 2009

Ringing the Bell

My last post generated some comment conversation about Henry ringing the bell. I thought I'd give some details.

Henry's radiation at Hopkins took place in the same arena for kids as well as adults. He received excellent care there. We felt so very well cared for everywhere we went at Hopkins.

The radiation oncology suite for me was an odd place. There wasn't much privacy, and since Henry needed to have a general sedative for each session of radiation, we were often there for 2 hours to get 3 minutes of radiation. So we met a lot of people.

The first group was what I called the Prostate Club. I of course have no idea what their diagnosis was, but there was a steady group of well appearing sixtyish looking men in their business suits who would show up in the morning, quietly and without speaking change into a hospital gown, enter the radation room, and be off to their day. Then followed a motley crew of outpatients who showed up in various degrees of health, some in wheelchairs, mostly walking but looking tired, for their treatments. Occasionally, an inpatient rolled by in a stretcher, usually looking pretty sick. Sometimes we chatted and got the story, always sad, and sometimes they were too sedated. Everyone smiled at Henry (which is not to say that he always smiled back).

Near to the treatment rooms was a bell on the wall. When treatment was over, you rang it. I'm not sure if it was a thankyou or a f*ckyou to most patients, perhaps a weighted combination of the two. We saw many people ring that bell, from the prostate club to little old ladies clawing to get out of their wheelchairs and ring that thing. The staff, the patients, anyone around would stop and clap everytime it rang.

Henry loved to watch. He knew he would get to ring it on his last day. He used to whisper to me so no one could hear, "She got to ring the bell. I'm gonna ring it three times."

He didn't ring it three times. He rang it four times.

This is the poem that was posted next to the bell. I don't have a good shot of the bell. I'm not sure why he looks so serious in this picture, he was all smiles this day.

Monday, October 12, 2009


Tomorrow is the two year anniversary of Henry's diagnosis.

This time of year is so hard. The smells, the leaves turning, the crisp air, all brings so much back. His diagnosis, his surgery, our utter shock and horror, and then his relapse the following year coinciding.

Halloween is even worse. For the last two years I've put on a strained happy face so the kids could enjoy it, hating every minute. Henry was so scared in 07, it was just after his craniotomy and he felt awful. Last year was our Disney trip, we were trying so hard to feel happy, especially for the girls, but he again felt terrible.

This has been a hard week. A dear friend has received some bad health news related to her own child. I can feel her anger and confusion, it mirrors my own two years ago.

We have our bereavement group again this week, I have been looking forward to it since the last one. I'm hoping for a little relief.

Sunday, October 11, 2009


Shameless Product Endorsement:

Any knitters out there?

You have got to try Dream in Color.

Superwash wool, toss it in the washer, toss it in the dryer. Warm, comfy, mostly non-itchy.

I've only used Classy (worsed weight), but there's also Smooshy (sock weight) and Groovy (chunky weight).

Try it, you'll like it. The colors are to dye for. Ba-dum-dum.

Saturday, October 3, 2009

Cancer Mom

I don't follow many blogs about kids with cancer anymore. I knew a long time ago that pediatric cancer support is not the place for me to put my efforts. And frankly, more than half of the kids that I got emotionally involved with are dead.

But there are a few that I follow, kids who are doing great. And I feel great about that.

A few months back, one of the moms who blogs wrote of her guilt surrounding the complaining that she does regarding her surviving child. The constant anxiety about recurrence, the worry about scholastic achievement, fertility many things that seem small when compared to losing your child, but in day to day life are so, so big.

In the past, I've had what I see as sociologically primitive moments where I will see a child, Henry's age, and wonder why it struck my family. Uniformly, this happens when I see a child who, due to genetics or circumstances, is exceedingly likely to become intimately familiar with the federal justice system. Bad kids with awful parents. They aren't hard to spot. And I think about Henry....he was so smart, so strong, so handsome. He would have been, in all likelihood, an upstanding member of society, contributing, enriching my and other peoples' lives. It's not that they deserve cancer, hell maybe they deserve a break more than Henry did, but it seems a waste.

I don't feel good about those thoughts, but as with all things, it is what it is.

But I have never, NEVER, seen a cancer survivor and even for a millisecond wished for their prognosis to be switched with Henry's. I have never been angry at them, or felt malice toward their parents for their victory. I have nothing but joy in my heart when I hear about a kid who kicked it.

And though I would have done it for the rest of my life, gladly, taking care of a kid with (or who had) cancer is a merciless journey. And I don't miss it, even a little. The constant underlying anxiety, fear, desperate terror of relapse ate me up. It doesn't seem right to even say it, but dealing with that was harder than grief for me.

If any cancer moms or cancer dads follow my blog, know this: those of us who have lost a child are your biggest supporters. We love your children, and we want NOTHING but the best for them. Your victory is our victory.