Once a month, I write an online "column" for a website called Hopeful Parents. It's a wonderful community of people who write about life with children who have "special needs." I write about our situation, which was having a child who has cancer, and is now grief.
As I was writing the piece for this month, I shared what we are doing in Katie's Comforters Guild, so I thought you might like to read the piece. You may also know a family who would benefit from reading the blog, and being part of the Hopeful Parents community. If so, please follow the link above, and/or pass it on to others. Here is what I wrote for this month:
"I’m writing this on an airplane, returning home from celebrating Thanksgiving and two birthdays with my family (our son’s 17th and my mother’s 77th). It was a time of rest, recreation, breaking of bread and reunion with grandparents after their move to follow the sun for the winter months.
Thanksgiving is my favorite holiday for its simplicity…no gifts, no cards, no elaborate preparations or festivities…just the nourishing of the body with good food, and soul with service, sharing and gratitude.
But in grief, it is often difficult to enjoy the holidays, because for all of our gratitude for what IS, we feel acutely what is missing…or, I should say, WHO is missing. Grief can be especially intense during the holidays. For us, these days without Katie will always be inferior to the days when she was with us - the days before her illness and her death. That’s a fact. Yet we are thankful for what remains: people who are dear to us, traditions that are beloved in their familiarity, and the comfort of memories that include Katie.
It’s amazing that a young lady who we knew for only 12 years could so profoundly change us that we will live the rest of our lives missing her. Gregg was 40 when Katie was born, and I was 35. Yet we will always feel that the light in our lives is diminished since her passing. That is the impact of a beautiful, light-filled girl.
In missing Katie, I have been impelled to reach out to others who are suffering by making blankets for other children in the very cancer ward where Katie was treated. This sewing project has now become a guild, which exists to provide a homemade blanket for every single patient who enters the hospital. This guild is groundbreaking, because it is “virtual,” does not require meetings or donations of money, and is not for fundraising. It is part of Katie’s legacy; her quilt - and the comfort she derived from it - inspired me to start sewing for the hospital.
I have been working to let people know about the guild, to rally support, writing and producing promotional materials. This work has reminded me of the enjoyment I had in my former working life. It energizes me. It’s not something I want to do all day, every day, but it gives me joy and a sense of accomplishment, every time I receive a “Yes,” and a “green light” in support of the guild. This is a direct effect of Katie’s life (and her death) on mine.
So this Thanksgiving, I have been particularly grateful for my family, friends and colleagues in this work. I am thankful for those who treated Katie and cared for her and our family when she was sick. And I give thanks to God for giving me an answer to my prayer: “What am I to do now?”
For all Hopeful Parents, I am thankful for you, and for this place where we can share our stories and support. Here is my prayer for all of us, quoted from Wayne Muller’s book, Learning to Pray:
“May all beings be healed.
May all beings be at peace.
May all beings be free from suffering.”
May it be so.
And may you enjoy the coming holidays, filled with love."