Sunday, December 14, 2014


Dear Sammy,

It's been a year.
A whole year since we last held you. A whole year since we heard your voice and your laugh.

The other day, Solly came into my room in the middle of the night. Something in the quality of his voice, I truly thought it was you when he asked me a question...I wish I could hear your voice just once more. I wish I'd asked you to make more videos for me.

A year has gone by, Sammy, and we've done so much to help the whole world remember you. So many of our friends and colleagues shaved their heads and each one of them did it because YOU inspired them. We've raised a lot of money for research, and we're definitely not done yet. I know that you would have been an amazing speaker and presenter at all of these events and for all of these organizations. I can only imagine how it would have felt to have been your entourage, bringing you, the featured speaker, up to the stage each time. I'm sure there are lots of kids who like mustaches, googly eyes, frogs and turtles, but I also know that there are lots of people who now think primarily of you, Sammy, when they see any one or combination of those things. You wanted to be famous, and I can think of a million-billion ways I would have rather helped to make it happen.

A year has gone by, and we have done "the first time without you" for so many things. Each milestone, each day that has passed on the calendar, each day moving farther and farther away from you and your physical presence in our lives. I don't think we'll ever get used to missing you, but I think that we're figuring out how to live each day without you here with us physically.

A year has gone by, and each and every day your siblings remind me of you so very much. I see children your size and I think about where you would be, what you would be doing. I hear of the accomplishments of your friends and I often turn to share that information with you....but you're not there to see the pictures. When Yael lost a tooth the other day, I couldn't help but think of how you would have reacted to the whole thing. Would you have helped her to continue to believe in the Tooth Fairy? Would you have burst her bubble? I'm not so sure!

We're leaving for Israel soon, Sammy, on the trip that inspired your request to go there last November. For so many years, we've talked about this Israel trip, about taking our whole family together. I even discussed it with Dr. M when we headed toward you think that Sammy will be able to go to Israel next December, I asked him. It seemed so far in the future, and now we are here. It's not the trip that I imagined it would be, because you won't be there with us, but I am so incredibly grateful that we were able to have our "first family trip" to Israel with YOU last year. I know the trip was difficult and not what you hoped it would be. But for the now, for today, I am glad that I can say to your siblings and to ourselves, "remember when we were here with Sammy?"

On what would have been your 9th birthday, we served dinner at the Ronald McDonald House, a meal that you probably wouldn't have even eaten (chili! baked potatoes!), and on this day, the last day you breathed, we will do some of your favorite things. We're going to watch How To Train Your Dragon 2, and we're going to eat your favorite Indian curry for lunch. We don't need one specific day to remember you, but this day feels heavier, harder, sadder than all the rest. We'll hold hands and we'll snuggle on the couch with popcorn, and we'll all miss you together. We'll go to your grave, not because I think that you are there more than here (or anywhere), but because I think it might help us all to be in that place....

It's been a year and I can't quite wrap my brain around 365 days without you.
It's been a year and until you died I'd never spent more than 10 days apart from you.
It's been a year and I can't understand how we're going to do this all over again for years and years.
It's been a year and I wish you were here.

Oh, Sammy. It's never the same without you.
I miss you and love you every day.


P.S. I ordered a new shower curtain today and I made sure it was flowered.
since Sammy died....


  1. with you, all over again, this deep, deep day, and always

  2. With heavy heart for you, especially today. May you find comfort in each others' presence and the knowledge that so many are thinking of you and Sam, today and always.

  3. This is beautiful. I hate that you had to write it, that it all has to be.

    Sending tears and love.

  4. Sending love and comfort from Amsterdam.

  5. Many times I've added my voice to the chorus of those around the world who wish to extend their support to you, and every time, I come up with nothing new to say. Thank you for sharing your broken hearts and challenging journey with us, and for all the good you do in Sammy's name. May his memory continue to bless and inspire you and so many others, always.

  6. Love and comfort from Boston. I only knew Sammy through this blog, but it's not an exaggeration to say I think of him every day, and I can't imagine how much you miss him. How we all wish you were all going to Israel together this year!

  7. Hugs and warmth to you and your family, Phyllis.

  8. Thinking of you and your family from England. Hugs

  9. Thinking of you and your family today. May God comfort you.

  10. Know that Sam is remembered by so many including those of us who only knew him through your blog. He will not be forgotten

  11. I read your blog without fail....have since my precious 6 year old granddaughter was killed by cancer 10 months ago, only 3 months after diagnosis. Your words break my heart, of course....but they also inspire and uplift. I'm so very, very sorry that the world has lost the opportunity to know your beautiful Sammy but please know that you are representing him well and that scores of us have come to love him through you. Bless you and your wonderful family.

  12. I have been reading your blog for well over a year. I am sure that I am one of countless people around the world who think of your special Sammy regularly. I am constantly in awe of your strength, sensitivity and wisdom as you struggle to move forward - all the while missing a part of your heart. May Sammy's memory be for a blessing and may you and your family find comfort in your memories.

  13. Thinking of you daily - lifting you in prayer. Lisa Weisman

  14. Was thinking of you at this time of year. Still heart-wrenching to read your posts and seeing the picture of his headstone. Sending lots of love and prayers to you and your family.

  15. Thank you for sharing with us your brave and sacred journey of continuing on. Wishing you and your family much love and comfort.

  16. A beautiful, heart-wrenching post. I cannot imagine how you all carried on, hour after hour, day after day, and yet somehow, 365 days later, you're all standing, remembering, honoring Sam's memory and the millions of other things you're doing to help kids and families. Prayers and hugs.