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Today Chase has been gone for 610 days….or 1 year, 8 months, and 1 day. Closer to two years than one. As I think we all do, today on this New Year’s Eve I awoke and thought, “Wow another year gone by.” But my immediate second thought was, “2018 is the first full calendar year that my Chase was not here.” Tonight the globe celebrates another year gone by, some grateful it was a good one and many others thankful the nightmare is over-hopeful that 2019 will bring better days. We grieving parents live somewhere in between. For each year is a nightmare of sorts and marks another without our children. We are glad it is over.  But unlike other people’s “bad” years, we can’t look forward to the next one being brighter and better because we know they aren’t coming back. So we look back at a year without them, and look to the coming year…without them. But we welcome another year closer to being with them again. 2017 was by far the worst year of my life. It was the year Chase died. But on New Year’s Eve last year, I recall at least taking some solace in the fact that he was HERE that year. He lived. I got to hold him and smell him and kiss his angel face. There are pictures of him. I knew 2018 would have none of that to offer. But here I am at the end of it despite.

Chase is always with us.

A lot happened this year. I went back to work full force, which is both hard yet helpful.  I left the house where Chase spent almost his entire life and died in. I mustered the courage to attend Chase’s 5th grade graduation and watched as his beautiful classmates said goodbye to elementary school. We survived his first birthday without him, and the first full year without him. An old and close friend dumped me in fairly horrific fashion. Ryder went to 7th grade, the year they were supposed to be together again. Every day he walks home alone, and he remembers that Chase should be walking with him. He remembers that he should be telling Chase about which 6th grade teachers are the best ones and which ones to look out for. Watching him hurt is almost as heart wrenching as missing Chase. A year of holidays, vacations, first and last days of school…it all happened without Chase. Gallons of tears shed. Every Single Day was hard, some bearably hard and others impossibly hard. When the Bush’s both died this year it became more well known they had lost a daughter to cancer in 1953. 1953. They lived sixty five years without their Robin. On his death bed, 65 years later all George HW had to say is that he was happy to finally see her again. It is brutal to think of living 65 years without Chase, and frankly I am thankful I am too old to live even close to that long without him. But statistics show it may still be decades, thus I-like so many others-have to find the way through it.

I read Viktor Frankl’s book Man’s Search for Meaning last winter while participating in grief therapy based on his observation that even in the darkest-of-dark, people who are able to find meaning can prevail. Just a few of the many quotes from this book that spoke to me:

“Love goes very far beyond the physical person the beloved. It finds its deepest meaning in his spiritual being, his inner self. Whether or not he is actually present, whether or not he is alive at all, ceases somehow to be of importance.” 

“Humor was another of the soul’s weapons in the fight for self-preservation. It is well known that humor, more than anything else in the human make up, can afford an aloofness and an ability to rise above any situation, even if only for a few seconds.”

“When a man finds that it is his destiny to suffer, he will have to accept his suffering as his task; his single and unique task. He will have to acknowledge the fact that even in suffering he is unique and alone in the universe. No one can relieve him of his suffering or suffer in his place. His unique opportunity lies in the way in which he bears his burden.”

Dr. Jeff and I at the lab where Chase’s cells live.

This past year I certainly did not always bear my burden well, and I am not even sure the ratio didn’t favor that. But there has been laughter, precious moments with Ryder, and the tremendous love for both my boys has not wavered. That truly is the meaning of life. I have found meaning again in my work helping people heal their relationship with food, and in continuing to parent both of my incredible sons. Parenting a child who is not here with you is not something one prepares for, but I am finding that is one of the things bereaved parents need to learn how to do. Death does not change the fact that we will always be their parent. We can no longer pack their lunches or teach them to drive or send them to college, yet we still deeply yearn to parent them. When they are gone, parenting lies in being the caregivers of their memory. I am still figuring out exactly how to do that, but I made a start of it.

I was able to get the Children’s Brain Tumor Family Foundation five NYC marathon slots, which they had previously been denied. In doing that I helped our team raise over $60K for the cure (thank you again to all who donated!!!), and somehow (with the help of my sister-in-law, my cheering squad, and surely Chase) pushed my body through a marathon I didn’t have the heart to train for-an example of not always bearing my burden well. I started making jewelry again after many decades, which has proven meditative and brings me closer to my incredibly creative son, who I am sure helps his far-less creative mom. Ryder is learning and has a better attitude about school than he ever has. We even get through homework without fighting and tears for the first time since kindergarten. Throughout these 12 long months, Chase has shown his continued presence-to me and others who knew and still love him- in many magical ways. Those moments give bittersweet comfort. Ryder and I continue to feel deeply loved and surrounded with support. There is much still to be thankful for.

No Laughing Matter. Fundraiser for the CBTP. Jim Gaffigan performed. Chase was honored with many other children gone too soon.

Marathon Shirts

So, 2018 is over. It’s hard to “look forward” to another year in many ways, because it just too daunting to look ahead to a year without Chase-isms, drawings, snuggles, and that incredible giggle. But it’s coming anyway, so I brace for it and even have some goals for the coming year.  I don’t know how long I will be here-none of us do-and I certainly don’t know why I am here and Chase isn’t. It’s not always easy for me to find meaning and gratitude, but Viktor Frankl taught me that for sure doing that is the only way through this. That, and a whole lot of grit. Happy New Year. May you all have health, laughs, and love, and seek meaning in 2019.

Chase’s 5th Grade Yearbook

Gratitude. April 30, 2018. Surrounded by love and wonderful memories. Chase’s teacher honored him with all things green and a wonderful gathering.