Sunday, October 21, 2012

The Second Anniversary

Always in the deep woods when you leave familiar ground and step off alone into a new place there will be, along with the feelings of curiosity and excitement, a little nagging of dread.  It is an ancient fear of the unknown and it is your first bond with the wilderness you are going into.  What you are doing is exploring.
          Wendell Berry

Tomorrow marks the second anniversary of Matthew's death. In some ways it's hard to believe that two years have passed, and in other ways it seems like the longest two years ever. Whichever way I look at it, it doesn't seem fair. As anyone who has ever lost a child will tell you, there's no making sense of something so out of the natural order of things.

As you might imagine, October takes on a new significance for our family, and it's one I am trying to come to terms with. Two years ago when Matthew got sick, it became the longest three week journey of our lives. From two different ER's to three different hospitals, to ICU's, to a long open-heart surgery and to a week in a coma, it was beyond anything anyone could have prepared us for. Last year, as we approached the one-year anniversary, I found myself reliving each day of those difficult three weeks. At any time, I could tell you where we were a year ago, which doctors we saw, the nurses on duty and, of course, conversations with our boy. And while that reliving may have been important to do last year, I was determined not to do it again this year. It's not the way I choose to remember Matthew.

So as we entered the month of October this year, I tried to focus my energies elsewhere. In the beginning of the month, we went on a few walks and hikes in the Olympic Peninsula and on Bainbridge Island, which I found to be incredibly therapeutic. When I'm outside I am so much more able to feel a part of a larger piece of the cosmos. And in turn, I feel Matthew's presence in a way that I'm unable to in my more day-to-day routine. When I'm outside and walking in nature, it's as if the veil that separates us (the living and the dead) is lifted a bit and appears to be more translucent. Everything and everybody appears so interconnected. Life's biggest questions start to reveal themselves to me as I step out in nature.  And while I don't pretend to have any of the answers, I find that oddly comforting. I feel less alone out there. 

Further on into October I went to Estes Park, Colorado for work. I was so fortunate that my husband was able to join me for part of this, and we were able to spend time outside with the Rockies as our backdrop.  We were there during elk mating season and the sounds of their bugling reverberated over the rock outcroppings; their echoes filling the thin air with their ancient sounds. We walked amongst scenery dotted with the amber glow of the aspens and saw the first snows of the season deposited on distant peaks. Again, I felt the presence of Matthew.

So now we find ourselves in the final stretch and we are in Canada for a few days. The weather is not as cooperative as the beginning of the month, but that doesn't matter. In fact, being outside in the rain and cooler weather seems oddly appropriate. We will time it so that on the 22nd we will be with our other two children up in Bellingham, at the school that Matthew loved so dearly. The four of us will be together, well actually it will be the five of us.

In closing, I want to share a poem that a dear friend of mine wrote upon learning of Matthew's death. Parker Palmer is a founder of the organization I have worked at for the past 14 years. He was leading a retreat for us in Washington D.C. on October 22nd, 2010 and wrote these words which mean more than you can ever know. Thank you Parker.

For Matthew, in Memory and Hope
With great love to Robin, Israel, Jordan and Aviva...

I never met you, Matthew,
but still I weep for you,
knowing you as I do now
through your family's eyes of love. 

You died with so much life unlived
no words will ever do. I only want
to promise you that, as we grieve
your absence, we will do our best

to live well for you, to hold with
special care everyone who suffers,
knowing we are one with them, to
be of comfort to your family even

when there is no comfort to
be found, to live our own lives
keen-aware of the precious gift of
life we hold in trembling hands. 

—Parker J. Palmer October 23, 2010 

Monday, October 8, 2012


“Everyone must leave something behind when he dies, my grandfather said. A child or a book or a painting or a house or a wall built or a pair of shoes made. Or a garden planted. Something your hand touched some way so your soul has somewhere to go when you die, and when people look at that tree or that flower you planted, you're there. 

It doesn't matter what you do, he said, so long as you change something from the way it was before you touched it into something that's like you after you take your hands away. 

Everyone has a desire to leave their mark on this world. It's human nature to want to leave our planet a better place for future generations. I think many of us start thinking about this seriously in our fifties as our own mortality comes a little more into focus. For bereaved parents, this role is cruelly reversed. Suddenly you are faced with the death of your child and you become painfully aware that you want to make sure that the world doesn't forget them. You think of ways to create something so that your child's legacy lives on. 

Numerous organizations have been founded  by parents after the loss of their child. One of the best known is Mothers Against Drunk Driving (MADD). MADD was founded by Candy Lightner in 1980 after her daughter Cari was killed by a repeat drunk driving offender. Today, it's one of the most widely supported non-profit organizations in America. It's an excellent example of a parent taking a tragedy and turning it into something with the potential to benefit many in the future. 

I have two friends who have lost daughters to different forms of pediatric cancer. You may not know this, but cancer is the #1 cause of death by disease among children. I have learned much from my friends Reba Ferguson and Karen Gerstenberger. Karen's 12-year-old daughter Katie died five years ago this past August from adrenocortical carcinoma. Reba's 12-year-old daughter Hannah died of an anaplastic medulloblastoma brain tumor in August of 2010. Both Reba and Karen (and their husbands) are involved in raising people's awareness about pediatric cancer, and both have been involved in raising substantial amounts of money for the cause. They are particularly excited about a thrilling development in pediatric cancer research taking place at Children's Hospital in Seattle, WA. The Ben Towne Center for Childhood Cancer Research at Seattle Children's Research Institute is devoting millions of dollars "to accelerate the pace of pediatric cancer research--changing the way childhood cancers are treated and cured." The Ben Towne Foundation was started by parents Jeff and Carin Towne after their three-year-old son Ben died of a neuroblastoma. Through their parents' efforts, the legacies of Katie, Ben and Hannah  will live on forever and hopefully eventually eradicate pediatric cancer.

When Matthew died, we too were faced with how to honor him. He didn't have a disease that we could raise money for, and yet days after he died we were beginning to be asked where people could donate in his honor. After much deliberation, we decided  that the best way to honor Matthew would be to ask for donations in his name to the school he had been attending: Western Washington University. Matthew had just started his senior year up at Western when he got sick, and it's a place that he had truly come into his own. He loved WWU and we thought it would be appropriate to suggest that as a place where people could make donations in his name. Imagine our surprise when just a few weeks later someone from the Development Office at WWU called to say we should consider endowing a scholarship in Matthew's name. The response had been so great that we were very close to having this become a reality.  We were blown away.

The scholarship was endowed, and we've now had two well-deserving young people receive money towards their first year of tuition at WWU. Both recipients-Christopher and Macy-are paying their own way through school, and the money they received from this scholarship is money they don't have to borrow and repay. We know Matthew would be proud that he is helping them fulfill their dreams of a higher education at a school he so dearly loved. We also have a bigger goal in mind for the scholarship and that is to fully fund tuition for someone for a year. It may take years to get to this point, but we hope to continue to add to Matthew's scholarship so that one day, a student will be able to say that it was because of Matthew Gaphni, that he or she was able to attend Western.

On October 22nd, it will be two years since Matthew died. And while it's difficult to see a silver lining out of our tragedy, I can honestly say that the scholarship has been a gift for our family. We are grateful to everyone that has helped make this a reality for future students. 

Here's a link to WWU. Or you can send a check into:
WWU Foundation
MS 9034
516 High Street
Bellingham, WA 98225-9034
The gift should be designated for the Matthew Gaphni Scholarship. 

Here are some links to organizations supported and/or founded by my friends Karen and Reba to fight pediatric cancer:

Katie's Comforters Guild
The Pink Polka Dots Guild
Pediatric Tumor Research Fund
Ben Towne Center for Childhood Cancer Research