Wednesday, June 4, 2014

Say His Name

One recent Sunday, Hannah, Noah and I made our way to Clinton Cove Park for the 5th Annual Hope & Heroes Walk. Every year, Jeremy and I form a team to honor our son Jacob. For those of you reading my writing for the first time, Jacob died several years ago from childhood cancer. Jeremy was already at the walk because this is a busy workday for him.

We were wearing our Team Jacob tee shirts. Jeremy lovingly designs a team shirt every year, with my input, around a theme we both come up with. This year's theme was a waffle, one of Jacob's favorite foods. Jeremy developed a very special high calorie, nutritious recipe for Jacob because during treatment, he needed to gain weight. The recipe appears on the back of our shirt.

As the three of us approached the event, we noticed the usual number of enthusiastic volunteers. Most were extroverted young women, and all were smiling widely and cheering as walkers entered the balloon festooned event. They clearly were having a great time, making happy spectacles of themselves, wearing shiny wigs and other colorful accessories.

As our little party of three got closer, the cheering and clapping grew louder. Go Team Jacob! They screamed. They waved their pom poms and jumped up and down. My teenagers found the scene a little overwhelming and cringe worthy. I loved it. I waved and clapped and cheered for ourselves, Jacob, and the day, which was brilliantly sunny.

Last Year's event was marked by bone chilling torrential rain, but the same number of volunteers were out then, cheering and encouraging, making me feel better than a celebrity on the red carpet.  It’s one of my favorite parts of the walk.

Since I've noticed before how much I love the cheering sections, there was no mystery that I would enjoy it again this year. But there was something about the thrill of electricity I got when they shouted the words Team Jacob that made me a bit more thoughtful about it.

It wasn't until the next day, when the busyness and excitement let up a little, that I realized what was going on. The jolt of happiness was all about hearing his name. I heard the name Jacob from the cheering section. I heard the name Jacob in conversation as we walked. I saw the word Jacob on signs, tee shirts and stickers. His name was everywhere. I could see it. I could hear it.

When you have children, people ask you about them all the time. You take hearing their names for granted. They ask you how they are doing in school, what they are doing for the summer. Their names are banded about casually, many times a day. I enjoy talking about Hannah and Noah in all sorts of ways. When children are alive, there is always something new to report.

But when your child dies, the name you so lovingly chose, the one you proudly shared on a birth announcement and party invitations, heard called at the Pediatrician, later the hospital, and finally the memorial service can seem conspicuously absent.

You learn quickly after the child dies, that the name of the child you still love, can silence a room of people and startle those not expecting to hear that you are the mother of three. Many people haven't gotten the memo that it is okay to talk about this child.

The Hope & Heroes Walk is not the only place I feel comfortable saying Jacob's name, but it is one of the easiest and best.

Jeremy and I have attended various bereavement retreats and support groups since Jacob died. These have been lifelines for us. They are places where it is completely normal and encouraged to talk about your child who died.

At one of the groups, they have a tradition of everyone in the group holding hands and each person saying the name of their deceased child. If there are 30 people in the room, I have a sense of mass tragedy by the time everyone is finished. That is because that is exactly what it is.

I think that this is a poignant and important thing to do. At the same time, it leaves me devastated. I'm like a dishrag by the end. Then it is over. Going to lunch and socializing after such an experience feels surreal.

The walk stands in contrast to this. I'm not saying that the walk is better than the support group. There is clearly a place for both in my life.

The walk reminds me so much of Jacob himself. Jacob was a very sunny person and a social butterfly. He was popular and well liked. Everywhere he went, people were happy to see him. And he was happy to see them.

That larger than life personality of his reminds me of the cheering sections, the upbeat music, the sun of 2014, the driving rain of 2013. Seeing doctors and nurses there, even though if they aren't from his medical team, remind me of him.

People who actually knew Jacob are very special to me. Many of these important to Jacob and important to me folks are there. As we walk alongside them and share snacks and conversation after the walk, I'm reminded of their relationship with him. The ones who brought him toys. The ones who babysat in the hospital. The one who played music and danced with him. The ones who kept us company in the surgical waiting room.

Jacob was no shrinking violet. Walking around with enormous signs with his name and favorite food emblazoned on them is quite appropriate. If he were shy, I feel like we'd have to represent him in a quieter way.

I'm not much into sports like baseball and football, but forming Team Jacob and doing something positive as a team feels natural. I am much better at raising funds to help kids with cancer than I am at pitching or tackling people.

Like many sporting events, there is a healthy and fun sense of competition between teams. But here, there is also a sense of everyone rooting for and supporting one another. Team Jacob, Team Sienna and Xander’s Orange Crush have different stories, but the same goal.

There is some sadness underpinning this event because let's face it: childhood cancer sucks. Even so, the walk is relentlessly upbeat. Jacob himself was like this a lot, even when things were hard. So while Disney may be the happiest place on earth to lots of people, I think that for me, the Hope & Heroes Walk easily fits that description.

Jacob is a beautiful name. Jeremy and I had it all picked out years before having children. I'm still very much parenting this child, in my own special way.

You will never be wrong in asking me about Jacob, sharing memories if you knew him and allowing me to bring him into conversation.  Jacob is the opposite of a taboo subject. So go ahead. Say his name. It's okay. Really!


  1. New people I meet will often ask "do you mind talking about Alexander?" I reply - "not at all! I love to talk about him!!!!" There isn't a week that goes by that someone doesn't post an Oreo recipe and tell me they are thinking of Alexander (and even if they don't actually say "thinking of Alexander" I know they are just because they posted the picture!

    1. I'm so glad to read this Cookie Gal! Always good to know I'm not the only one. And I think of Alexander EVERY time I eat an Oreo because it's one of my favorite desserts. That means I think of him OFTEN.

  2. Thanks for this because sometimes I don't know what's okay or what's appropriate but I really want to know and this really helps. I just discovered your blog via Jeremy's post on Facebook and I'm so glad I did. I just received a lovely card from you with the waffle recipe on the back. It meant a lot to me. All my love to you and your incredible family. Ali Williams