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


  1. Thank you for writing this, Robin. A legacy of some kind is a real, driving need in bereaved parents, and it can be (as Matthew's scholarship is) a blessing to the larger community.

    After five years, I am finally feeling a sigh of relief about this. We have Katie's bench, and there are many places that have been touched by her spirit and memory (memorial plaques in various places, speeches, book, endowment & such), but I think that the progress in cancer research has given me the greatest sense of this terrible wrong being put right, in a small way. It's certainly not enough to make up for her absence, but it is a real movement of the Spirit for good, and it helps.

    I love your blog. I always feel understood and respected when I read your thoughts. Thank you!

    1. Thank YOU, Karen for your friendship and support. It means the world to me.

      I menat to tell you that I finally saw Katie's bench this summer. I saw in it and looked out over the water and thought of that spunky girl of yours. It's a beautiful place to sit and ponder all the mysteries of life.


  2. Hey Robin, its Trevor, I love reading what you write on this blog. Your postings hydrate my soul! Matt is one hell of a guy and gave so much to me as a friend. I got so much love from him and can honestly say becoming friends with Matt will always be a happening in my life that I am forever Grateful for! Matt always was a plus in my life and I cannot imagine those years that he was present in my life unfolding without him. I still hear his voice in the back of my head whenever I come across a situation I figure he would chirp in on. I love you Gaphnis so damn much!

    On another note, something truly amazing happened to me the other day.....I got my cell phone turned on! OH... MYYY.... GOD!

    Yeah,,I was hoping that you could let Israel know because he was going to send me some readings or whatever and my phone was not in service at the time. THX
    I look forward to reading more of your posts and carry Matt in my heart every day. Thank you cannot even begin to express it for me, but Thank You!

    1. So great to hear from you, Trevor! Your words about Matthew are truly music to my ears. Thank you!!

      I hope to see you around the island. I did pass on your note to Israel. Hope all is well with you.


  3. Dear Robin,

    Though I rarely comment on blogs anymore, I want you to know that I continue to be a faithful reader of yours. I think I wrote myself out on my own in a fairly successful attempt to cathartically expel a portion of my grief over Erin's death. The grief isn't gone by any means! If only it were that simple! I'm just finding ways to channel it into more action-based activities rather than words as we're approaching the third anniversary of her passing in December.

    Your posts are all so relevant to experiences I've had in the past and continue to live through each day. Thank you for giving voice to the feelings of so many of us whose children were taken at such a young age. You do so with intelligence, grace and depth. I always look forward to reading your thoughts. You don't stray from your theme of Grief and Gratitude, substantiating that often-delicate balance with your life experiences in the aftermath of Matthew's death.

    Per this post, we've raised thousands of dollars for both the Sarcoma Alliance and Bear Necessities Pediatric Foundation, and have collected hundreds of units of blood at our Annual Birthday Blood Drives, all in the attempt to help those who now walk in the steps we did for three years with Erin. Yes, our children live on through our actions, and there is some comfort in that.

    Congratulations. What a blessing Matthew's scholarship will continue to be - for its recipients and for you.


    1. Thank you so much Mary for your comment. I know that when I first discovered your blog in the very early days after Matthew's passing, I clung onto your words. You were a little over a year ahead of me and were proof to me that life goes on despite the worst possible loss. I'm glad to hear that you read Grief & Gratitude. My hope is one day we can meet in person!

      Thank you.