Thursday, January 29, 2015


This week I discovered something else that Sam's death took from me.
It took from me something that is actually very important to me -- the ability to feel helpful.

Before Sam relapsed and died, I was a Resource.
I could share my knowledge and experience about being a cancer parent, about cancer treatment, about hospitals and doctors, about siblings and pharmacies and inpatient snacks.

I was useful to other parents and families.

And while I actually figured this out a while back, it hit me hard this week.

Our experience, my very existence in fact, embodies their worst nightmare. No one wants to learn from my experience because no one wants this experience. EVER.

And I would never ever ever wish it upon anyone.

Maybe it's just a selfish thing, this way that I'm feeling.
There are other very useful, wonderful, and oh-so-lucky Resource-people out there.

But it's one more thing that I'm missing. It's one more way that my life has changed, even in the brief period that I was useful and helpful...and now I'm not. I wanted our family to be that beacon of hope, I wanted us to be that shining light that helped others to see what was possible. I had imagined was part of what kept us all going. After this is over, we would say.

And the whole thing makes me angry. It makes me cry frustrated tears over feelings that I didn't even realize mattered to me....

Sam is a St Baldrick's Ambassador this year and it makes me so angry that he is the DEAD ONE.* It makes me so angry because he would have been amazing, awesome, simply fabulous as an LIVING Ambassador. It makes me so angry that Sam isn't here to make videos and send messages to kids who need encouragement. He was so good at making videos. He loved helping.

It makes me so angry that his story makes people cry tears of sadness instead of tears of joy. It makes me so angry that we thought he had a whole lifetime in front of him and it turned out that lifetime was only 8 years long....

*Please understand that we are so honored and glad to be working with the St Baldrick's Foundation this year to honor Sammy's LIFE and to help with their very important work. The one thing that I've realized in this new feeling of helplessness is that while I can't serve as a "beacon of hope," I know that the research dollars we raise can and ARE that hope.
Collecting movies from the mail at RonMac. He was so proud of how many you all sent.
Helping to unwrap all the RonMac movies and label them. 
Some more of those donations. Love that look on Solly's face.
Learning to take pills. He was very proud of the skill, and we talked about how he would be able to teach other kids.


  1. Pill swallowing is one of the most underappreciated pediatric developmental milestones. Sending love.

  2. It's that feeling of failure. But you are wonderful at keeping your family going and thriving. G-d willing that feeling of success as your other kids grow and succeed with overcome this feeling.

  3. I am holding you in my heart and sending love.

  4. But you are a beacon of hope. The role you play in pediatric cancer fundraising and the grace and humor and honesty and *real* way you've shared Sam's story and your own make us all hopeful that in time (less, not more) no kids and no families will ever, ever have to go down the road you have gone down.

    Sending xoxo and wishes for a Shabbat shalom to you from NYC.

  5. This comment has been removed by the author.

  6. You are a beacon of hope even if you feel represent a parent's "worst nightmare". As someone else mentioned, you are a tireless fundraiser. You have also endured the worst. You could be, when and if you are ever ready, a sounding board for parents that need someone to just listen to them talk about their journey. You experienced triumphs and defeats on your journey and know what that was like, you have been there and sometimes that is enough. The truth is your ability to be helpful has not been taken away as much as it has changed, it is not the same nor should it be because you too have changed. However it is not any less useful. I am so very sorry for the pain you and your family have. I have lost my own brother so I am all too familiar with how much that loss hurts. Please know you are all in my prayers.

  7. Phyllis, we have so many friends in common and we have met twice, but I couldn't bring myself to tell you that I have absorbed your every word since the beginning of your blogging.....because how do you tell someone you know them without having ever met. I have been one of the silent millions following your every step but on this blog, I must respond. Just this week I had two of my very close friends have a child diagnosed with a second bout of cancer. Because of you, and Michael, and Sam, and your family, I knew from the moment I heard how to support them and make them feel community. You teach everyone how to love, how to parent, how to spouse, how to friend, how to community, how to Jewish in times of sickness and in health. The ripple affect of your impact is beyond measure. That this concept even gives you pause makes me wish I had responded every day on how much your words and actions mean to me, my friends, and my community. On this Shabbat please take comfort in knowing that you are the ultimate resource, teacher, hero, mom, friend and more. You are a resource to me. Shabbat Shalom.

  8. I am sure the friends Sharon mentions above are the same ones whose situation brought about these feelings this week. They are friends of mine as well... You have taught so many of u how to respond and deal when you are hit with a horrible, challenging situation. You let us have a window into your journey and showed us all of your emotions. Because of you, I donated in the child's honor immediately and put together a care package for her and her siblings... because of you, I am trying to envision what they are going through and figure out any way possible I can support them. Don't underestimate your helpfulness or your impact on millions...

    1. Yes! Sarah said it well. Don't underestimate your impact. You help in ways you may not know. But I hear you.

  9. from helping to be-ing, even deeper roots; I came to Honduras to "help," the poor taught me how to be. You are "Samming" us now, a whole new life.

  10. Dearest Phyllis,
    YOU are a beacon of light to broken moms like me.
    you give us a voice with the gift of words you have!
    As our chasidic masters thought us"there is nothing more whole then a broken heart" you bring so much wholeness from within the brokenness.
    you give me strength!
    Love you so much!!!!!