Send in the Clown! The Crying-on-the-Inside Clown!

Cathleen has been gone four years now – since July 29, 2006. The grief, however, is not gone, nor do I expect it ever to be. I still cry over what I consider to be the ecclesiastical injustice of her dying so young but Pol Pot making it to 89. I still mourn the loss on a regular basis. But as time has passed, I’ve started to realize that the anger and grief that I feel can be channeled into something positive.

Now, it goes without saying that there is nothing positive about watching your child suffer and die in your arms. (But I’ll say it anyway, because I love to hear myself talk.) If I didn’t have Josie and Kari, I likely would have let the situation paralyze me, and I’d bet that most of you would understand why. In the last year, though, it’s become clear that although Cathleen was only physically with me for 18 months, she left a legacy that needed to be carried on. A life that short could still have a powerful meaning.

The challenge: define that meaning. Of course, I’m not even sure what the meaning of my life is, much less the meaning of life of a little girl who could only say two words. (“Hi” and “No”, if you’re wondering. The contradictory nature of the two words just shows how complex she was.) And if even if I could figure out what that meaning was, what could I do to live up to it, to share it – to make her legacy live on far beyond her time on earth.

It was like figuring out Fermat’s Last Theorem: The Grief Version.

Kari and I considered starting a foundation. The problem with that was we didn’t have time to do it right, particularly with a newborn, and if we didn’t do it right it would not honor Cathleen the way we wanted it to. We sponsored a team for a brain tumor run and I donated money through my office. I can’t speak for Kari (and since this is my blog, I don’t have to), but for me none of these things, though worthy, were enough.

Although it took almost the whole four years, the answer came, delivered not by providence, but by the U.S. Postal Service.

We get quarterly newsletters from the Children’s Brain Tumor Foundation, or CBTF. This is a small organization based in New York that uses a network of people – parents of patients, survivors, doctors, and the like – to advocate for and fund pediatric brain tumor research. It also provides support to families who are going through brain tumor treatment, not only to the patients but to the parents as well. During Cathleen’s treatment, they provided a great deal of help and information to Kari and me, as well as bags of treats and toys for Cathleen.

But after Cathleen died, it was hard for us to identify any support groups that understood about what we went through as parents of a brain tumor patient – the suffering, the wasting, the good days, the bad days, and then the worst days after we lost our child. We joined a terrific bereaved parents group that was identified through our hospice. The group is great, but as it is for parents who lose kids in varieties of ways – not only diseases like cancer, but car accidents, brain hemorrhages, and bulimia-related cardiac arrests – it didn’t quite offer the focus that I needed. There were also a marked lack of men in the group, particularly now. Most of the dads that were coming when I was there initially have stopped coming. Only one dad comes regularly, and he usually alternates months with his wife.

As should be no surprise, men and women deal with grief differently. As time marched on away from Cathleen’s death, as time is wont to do, an idea began to germinate in my mind. I wondered if it was possible to help other parents as they grieved. I am a battle-scarred veteran with empathy and insight, I thought grandiloquently. Can I use that for someone’s benefit?

It turned out that the most recent quarterly newsletter from CBTF had a note that caught my eye. It turns out that they have a parent-to-parent grief mentoring project. I had no idea such a thing existed. I would have availed myself of it.

What’s interesting is that in our last group meeting, held about a week prior to getting this mailing, I had talked about how much I ached to do something to honor Cathleen’s legacy. And all this time it appeared that the first step in doing so was to call a toll-free number.

I know that there will be some of you who will assure me that God put that newsletter in my hands. You can believe that if you want. While the postal service put the newsletter in my hands, I believe it was Cathleen making sure that I read the article and saw the phone number.

Clearly, Daddy’s Girl is still looking out for him.

I made the call, talked to the lovely lady who is responsible for coordinating the parents, and I am now awaiting training, which will likely happen sometime in September.

Whether or not I’ll be able to specialize, as it were, in working with fathers, I finally have found something that I would hope would make Cathleen proud. It also gives me an opportunity to talk about her on a regular basis.

I’m not sure what it is going to mean, being a grief mentor, once I am doing it. It feels a little like being in the grief airborne division, jumping in to provide whatever succor I can to someone who is in the rawest part of their personal war.

But I’m pretty sure I don’t have to worry too much. Cathleen helped me this far. She’ll help me figure it out the rest of the way.