Wednesday, January 1, 2014

Not Counting

In November, before Sam's relapse (BMT +65), I wrote:
I think we're always waiting for the other shoe to drop. We are here now. In this place between normal and not-normal.
I knew we would always live with that waiting…with that "other shoe" over our heads.
I knew that when we rang the bell last January that we were not "done" and that nothing would ever be the same. I chafed a little against the jubilation that so many people expressed to me. There was always a fear in the back of my mind, a worry that wouldn't go away.

After all, I knew the statistics. I knew that 50% of all AML kids relapse. I knew the odds that were not in our favor.

I also knew that childhood cancer survivors face many many long-term problems. Yes, I was glad to have the luxury of thinking about "long term" problems, but I was also terrified of what was to be.

When Sam relapsed in April, when we began the journey toward transplant, there was always that second shoe hanging over our heads. When would it fall? There is no bell-ringing with BMT for leukemia. Yes, there are days that are milestones, and there are days that a survivor can breathe easily. There are ways to feel secure that leukemia isn't on the horizon…but I also knew that I would, forever, examine every bruise and bump, every cough and wheeze. I knew that after BMT, Sam faced a world of new complications and problems in the "long term" -- we were facing secondary cancers, cataracts, growth issues, brittle bones…you name it. I was very fearful of a life for Sam that was painful and uncomfortable.

And then the shoe crashed down.

There's nothing left hanging over my head any more except the terrible vacuum of grief.
It's different. It's unbearable but in a totally different way.
I'm not waiting for the other shoe to drop.
It did, and I am left tightly holding a brand-new pair of tear-stained shoes.

So where are we?
We're about halfway through our sheloshim period, the first 30 days of mourning.

I just told a friend that I'm trying desperately not to count the days since I last kissed my Sammy.
She said, "you? you count everything!"

Every day forward is another day without Sam…and I can't stop time.

Many many people keep hoping for 2014 to be a "better year."
I'm not sure there can be a year better than the one that just ended.
Because there will never again be a year with Sam in it.

September 2007 
Always in his pj's...
Sam's famous grumpy-silly face
(Look, I'm fully aware that down the road, we will have good years. In that very pragmatic part of my brain that is still firing on some rabbinic cylinders, I know that we will process and heal and come to many days of great joy. I get it. I'm not teetering on the edge of a cliff, here, I promise. But for today…)


  1. You are allowed to feel however the hell you want to feel. You are allowed to say whatever you want to say. The other shoe definitely dropped. And hard. It makes sense that there will never be a better year because Sammy won't be in it. And, in a way, there never will be. There will be simchas galore in coming years, but they won't be Sammy's simchas. You posted an article the other day from another mother who experienced loss of her child and she said that it does get better. She would know more than me, but she still doesn't know for you. My guess is that there will be some really, really, crappy days ahead and that there will be some awesome ones (thinking David becoming a bar mitzvah as one of those REALLY up there ones), but there will always be a tinge of sadness. Another thing that will always be there? Us. Me. Your friends and family who have been there for you. Don't forget that you can fall back on us. Love you bunches.

  2. Someone once told me, "No one tells me how to grieve," and I think that's a pretty wise statement. Your feelings are always legitimate, and I hope that writing things down is as cathartic for you as it is for me. Always thinking of you. Always.

  3. We're here, and we hear you.

    May there be some comfort for you, somehow, as 2014 continues to unfold.

  4. Remembering that "Grumpy Face" with a smile :). Thinking of you all as you navigate these difficult times. There are no right answers, just taking it one day at a time. Your strength as individuals and as a family will help you move forward.

  5. Having just completed our first calendar year without our precious daughter, I completely agree with you, Phyllis... I thought nothing could be worse than Shea's death, but this year, this year without her, has been the worst in my life. Which is not to say that there haven't been good times, good laughter, good memories. It's just that Shea wasn't a part of them. Every thing to come is a mixture of bitter and sweet, but we continue to move forward... without "looking forward" to things, the way we used to. I can't say I understand what it's like, losing Sam, but I do know how it feels to watch, helplessly, as a deeply loved child succumbs to cancer... that I do understand. I'm so sorry... It does get better, and sometimes, it gets worse. The unanticipated blessing is the new friends that come from this journey, and the understanding, as never before, of the innate goodness and caring and compassion that surrounds us.


  6. Yes, yes. A thousand times yes. <3.

  7. Hugs for you, today and all days.

  8. I feel through your words how much you miss your boy. All the years with Sammy will never leave you. He's always with you and will be through all the joys to come. All my embraces and love.
    Thinking about the grumpy-silly-adorable Sam a lot every day.

  9. Everything you feel is 100% legitimate and normal. I think it's good that you write it. It helps those who don't know how to express their feelings and get hard and sick. From my friends who have lost children I know that it's a scar that never goes away.

  10. I'm listening and praying and whatever you feel is not right or wrong. It is the reality you live with. Thank you for trusting this space to share .

  11. sending you warmth and feelings. thank you for continuing to share with us.

  12. I just want you to know that I read your blog and re-read it and hug my 16-month-old son so hard I am afraid I'm crushing him. You are so eloquent, and loving, and just an amazing mother. The depth of your grief is so deep because the depth of your love is infinite. And I am crying as I write this, but every year will have Sam in it, always - you will never let his memory disappear. I pray whatever brings you comfort surrounds you.

  13. I keep visiting...keep praying...keep you all in my thoughts.

  14. Counting, I do a lot of it. I note the day my son Chemo first showed up at my house, our first visit to a cardiologist in Tegucigalpa, his first day at school, the day his adoption became official, his hospital stay for a virulent fever, his open-heart surgery, every one of them "count" as birthdays in one way or another. Any and all days and dates for Sam I want to count, too, since I feel you have allowed us to "adopt" him into our own forever-changed life.

  15. Blessings to you while you heal. And you will heal, although the scars will always remain. We're praying for many joyful events for your family in the future.