Saturday, January 18, 2014

This Old Life

Throughout the last two years, Sammy used to say to me often: "I miss my old life."

I feel that way all the time now.
I miss my old life. 

I miss my family of six. Desperately.
in the Sukkah, 2012
But which "old life" am I missing?

Do I want to turn the clocks back to May of 2012 and be in our "normal" life? Oh yes, I miss the oblivion of a "charmed" and "perfect" life with four healthy children whose biggest problems involved birthday parties and math problems and potty training. I desperately mourn for the sheltered existence of my children and their friends, of my loving circle. With each pregnancy, with each birth, with each generally happy moment of my "boring" life that I chronicled in my own personal blog, I knew that I was unbearably blessed…I was annoyingly happy, even with cranky toddlers or the everyday bumps in the road, and I had never truly known sorrow. 

And I can't even imagine returning to that life. What would it be like now? And since I can't turn back the clock, I can't go back, I can't hit the "reset" button…I'm here now.

Am I missing the "cancer parent" life that I was living up until November 12th? (I know for sure I'm not missing the "terminal diagnosis" life that we lived for that last terrible painful month. We don't even have to go there.)

Oh the pain and guilt of telling you that I don't know that I would want to give up some of the last two years. We made friends -- real, beautiful, powerful friendships -- with families in crisis, people who helped us, doctors, nurses, staff and volunteers at so many organization....all of the people that touched our lives and became our community. How could I beg to erase that even as much as I wish I could turn back the clock? 

There were people who were constant forces in our world for months at a time...and now they're just not. Some of them still are…and there's a whole new element to our relationships….

When Sammy was in treatment, we knew kids who died. I tried not to imagine their parents slipping out of my circle, I tried not to imagine what it must feel like to know that MY child was still in this, MY child was doing well…when theirs had died. So I tried to be gentle and respectful, keep my distance and yet not shut them out. It was a hard line to walk.

When Sammy was in remission, we knew kids who were still in treatment. I tried desperately not to flaunt our happy…nay, JOYOUS, feelings that all had come right with the world. I held onto their reality just a little bit, so I would always know that my own bliss could be popped, so very easily. And because of who we are and how we function, I wanted to think of ways to make their lives better; we completed a few projects and brainstormed others that we were going to accomplish and money we were going to raise. We imagined the future, keeping their reality in our minds, and the ways that we, with Sam, would triumphantly return, in honor of milestones and happy occasions.

And when Sammy relapsed…oh.... not only did we meet even more families, make more friends, we were even more immersed in the hospital world. Our life at Ronald McDonald House was terrible but beautiful, and we were constantly aware that everyone we met had a scary story to tell, and we wanted to help them all.

And now?
So many of the kids that we knew on the HOT unit, RonMac and in the wider cancer-and-illness-parent-world are still in treatment.
Some of them are doing great, still plugging away at chemo and fluids and line flushes…getting good scan reports and having MRIs and going on Wish trips and receiving packages and gifts and celebrating the everyday moments….
Some of them are not doing so great. Difficult decisions, scary hospital admissions, new procedures, not-so-good results, waiting...

As Sammy was dying and in the aftermath, I heard a lot of our cancer-and-other-illness-parent friends talk about "survivors' guilt." We're a silly bunch, us parents of sick kids. Because how could we be feeling guilty that our kids are still undergoing poisonous chemo treatments and bearing the badges of ports and central lines…still getting labs and tests and scans…but there's a guilt there, a feeling of "why is my kid alive when Sam is not?" Through our experience with Sam's brief remission period, I get it. I really do. And I want to tell you all this, right here, today:

Keep going! Live! Live! Live! Your child's living does not make me sad. Your child's living gives me hope. Your living fills me up with the breathable air that there is a light for all parents at the end of the long tunnel of this hell that is pediatric illness…that someday there will be cures and inoculations and something more than the not-quite-right methods we're working with now. The pictures of kids off treatment now with their gorgeous chemo curls and their everyday-ordinary-happy stories…they are so beautiful to me. And the stories of our friends who are still in treatment? I feel with you, I hurt with you, and I know how you feel…and I pray for you. Oh, how I pray.

The day before Sam died, I cried with another parent in the clinic. And I told him, "I want your child to live because her living will be a remembrance of Sam. Each child who knew him and shared this experience with him is another memorial to my son." Okay, maybe I wasn't quite that eloquent through my tears on that terrible day. But it's what I really wanted to say. Childhood illness isn't shiny ribbons and bald heads, and it isn't a commercial with pretty music and hopeful movie stars. These kids know it, and when they are grown and still remembering their forever-8-year-old friend Sam…they will not give up the fight to help eradicate these diseases.

And now I'm going to share my own confession on the other side of this: there's guilt here too. Michael wrote so beautifully about his "loss of fear," fear that he would be the one to set Sammy down a long spiral of decline, that the future would be uncertain, fear of the unknown. My guilt is similar. Aside from the pain of missing my son, my problems have suddenly returned to the "normal" ones from before, from that magical Time Before Cancer. I'm thinking about well-child visits and ice skates and birthday parties and homework and play rehearsals and Bar Mitzvah planning. I booked a ticket for a plane ride without having to consider how clinic appointments and pharmacy deliveries will fit in. I schedule appointments without fear that a fever will land us an unexpected hospital stay, and I am a little less stressed and worried when a kid starts to have a runny nose.

I knew this day would come, but I imagined it differently, of course. I imagined that I would be giddy with relief to focus on these mundane details because it meant that Sam was "all better." It happened too fast, it came too quickly. And so I continue to be sad and scared and worried for my friends who are still moving through treatments and unknowns. And the only word I can come up with is "guilt" to describe the feeling…not that I wish I was still in the throes of it, but heartbroken that others are. And grateful, too, that they are. Because it means that their kids are living, living, living. And I want that, I latch onto that. I eagerly await their updates because I want to hear how well they are doing…and I cry and rail and pray when their news is bad. And you might say I should stop reading, I should stop talking to them, I should stop…but I don't want to. They are my people, my community, my family. How can I step away? I know that eventually, as time goes by and treatments conclude and remissions are declared…our direct connections to the patients will fade. And that will be okay. I won't forget that even though I don't know their names and their stories, there are 24 beds on that unit and countless other kids all over the country fighting for their lives. And we will continue to do something about it….(See here, for starters.)

I miss all of my old lives.

Just some of Sammy's hospital friends…this doesn't even begin to cover it. And at RonMac…and the kids' schools and camps and everywhere we went, so many many many people that loved and cared for us…and still do. Thank you all.


  1. tears, hugs and prayers
    Your blogs are a kiddush Hashem.
    My sons both went through periods of hospitalization, which are ingrained in me physically, mentally and spiritually. B"H they both healed which I see as miracle. But parents don't heal, we just learn to go on no matter what the result of the challenge.
    May G-d give you, Michael, your children, family and friends the strength and faith to continue to live fully.

  2. Beautiful post. I find it so strange to look back on the "normal" of our family. It feels almost ghostly. A shadow time I can barely remember. And yet I'm constantly aware of the blessings of our cancer life -- something I never, ever could have expected or imaged during that old, normal life.

    I hope you will come to love your new normal life. I have faith that you will. And you know, as a parent still going through this (who, yes, feels survivor's guilt), YOU give me hope. That even if the worst were to happen, there is life beyond. You are proving that. You are an inspiration, still.

  3. I can't wait to be a nurse and help families like yours. Thinking of you, stranger.

  4. Phyllis, your words, always so full of grace and so carefully, thoughtfully, beautifully written, are also a great help to parents like me. Not a cancer parent, but the close friend of one whose daughter died 7 months before Sam did. We know we helped in being there for the living of the last months, and for the dying and its aftermath, and we know we are helping as our friend and her son continue to live. But I sometimes feel scared I've gone too far when I mention my kids (even the one who has had mental health struggles); it helps to know that our living is ok. Thank you, and Michael, for writing with such honesty.

  5. I have learned so much from your writtings. may you continue to have strenghth to reach out to pple . may you be able to shower love and warmth to all those close to you, and all that are still waiting for a refua. may your reaching out to so many pple and their needs be l'illuy nishmas sammy.

  6. Relish your normalcy. All your emotions ate soooooo normal for the situation.

  7. Thanks for checking in and these beautiful words. I have been wondering how your family was doing. We don't know each other, I am just one of the lucky people out here who has been privileged to read your blog via Rabbi Latz.

  8. Darn it, I think the internet ate my comment!

    I'll try again. I think I said something like:

    Thank you for this post. For saying these things, for articulating these complicated truths. Thank you so, so much for bearing witness to this awful-miraculous-painful parenting journey that you are on.

  9. Phyllis, thank you for writing these beautiful words and sharing your heart and soul. I think of Sammy everyday and Solly lights up the whole school with his deliciousness. The people you met along your path the last two years are so blessed to have you in their lives. xoxo

  10. Phyliss, feel free to contact me at your leisure. It's been 14 years since Danny lost his battle with AML and I am here for you.

  11. You are amazing!

    May all of us, in our living, living, living, call to mind the wisdom of Henry David Thoreau and do so with the spunk, gusto, sweetness and snarkiness of Sam:

    “On the death of a friend, we should consider that the fates through confidence have devolved on us the task of a double living, that we have henceforth to fulfill the promise of our friend's life also, in our own, to the world.”

    xoxo from NYC (perhaps the place to which you booked a ticket?!).

  12. You may not be trying for this, but you, your story and Sam help me on a daily basis.
    Thank you.

  13. Thank you for writing this blog. I am a survivor of childhood bone cancer, and enjoyed over 20 years cancer free, during which time I got married, had 3 kids, and lived life!!! Shockingly, in May I was diagnosed with stage IV lung cancer, apparently unrelated to the childhood cancer. I am doing quite well on targeted meds, but I know what the outcome of this will likely be (though I hold out hope for the miraculous, be it divine or medical). Your blog gives me hope that a family can go through the terrible pain of losing a member, and somehow find a way to keep going and healing. Thank you for sharing your journey.

  14. You are making a whole NEW life! a whole new way of living, giving, and believing. You know, somehow I KNEW you would do this, even though I only know you through your words--but such words! They plumb the depths, and they leave nothing out. Thank you for letting us in, into your Sammy-life, your whole family life. I feel at home, and I'm making my donation as soon as I finish this "reply"…! It's a little money, but I'm praying the Psalms every day, filling my life with your love.

  15. You and Michael are such incredibly selfless people. We will all help you continue to do something about it. Beautifully written!