Monday, May 5, 2014

Living Life Backwards

I feel as if I'm living my life backwards.

I wonder if on that last night as I kissed Sammy goodnight and he said "David, Dad's kisses on a bald head are the best. You should try it sometime," if I had known that was his last coherent moment would I have kept him up all night and talked and held him until morning light?

If I had known what December would bring would I have spent months snatching his iPad away more and telling him we had to dance and laugh and scream as if there were no tomorrows?

If I know what I know now would I have yelled less when he had trouble taking his myriad of pills and spit one up in the sink, knowing that no amount of pills would be enough to keep him alive?

If I knew what I knew now would I have fought harder for parallel holistic and naturopathic means of helping him fight his leukemia or researched each night until dawn until I uncovered the secret cure for all children for all times?

If I knew the transplant was going to work but not work would we have just stayed on outpatient chemo as long as we could, living strong in the moment and run through every day as if it were our last?

If we had looked up and known the truth for a moment would he and I have written more stories together and sang more silly songs?

Would we have demanded everyone in the family to put their iPads down and look up, look each other in the eye and acknowledge that this was one of the last precious moments we had to look out and see ten familiar eyes looking back at each other in awe as a loving family?

Would I have yelled less and hugged more, and would he have been happier and felt that life was fair sometimes because there was more laughter and less toddler frustrations?

If I lived backwards would I be able to change any one thing that might have made all the difference in the world?

I feel as if I am living my life backwards, looking back over eight short years, and touching certain moments that I wish were lived differently and wish I could change with just the gentle touch of my mind.

In case you are reading this in an email, and you missed the video link yesterday, please click here to see it.


  1. (weeping here.) that way madness lies, michael. you were and are a wonderful father, and phyllis a wonderful mother, and that came thru and comes thru in every blog post. i don't think life is really a choose-your-own-adventure book. yes, individual moves could be different, but with the illness sammy had it was going to lead to this ending. the true narrative is this: sammy knew utterly and without a doubt that he was loved. judging from your own phrasing ("until i discovered the hidden cure for all children for all times") you know you're musing about impossibilities. you DID do everything you could, and please don't go spiraling off into the abyss of what-if. in the times that you noodged him to take his pills, not knowing what the future held, you were also telling him that you loved him, just as you did when you wrote stories with him. more "don't second-guess"ings: everyone needs to retreat to his or her iPad now and then; everyone needs to yell now and then; no human can actually live every day as if it were his or her last because we aren't built that way. i mean, it sucks and it's good, simultaneously, that we don't know the ending of the story while we're living it. no one should have to live what you guys have. but even though i have not met either of you IRL i am completely one billion percent confident that you did everything you could in the big picture of everything. (and the low moments when you weren't the parent you wanted to be -- well, those moments are something a child Sammy's age and with Sammy's wisdom could understand -- he clearly knew his parents were people.) full-stop, life can't be lived backwards. as Tony Kushner wrote, the world only spins forward. for better and worse. wishing you love and healing, along with so many other of your invisible friends inside the computer.

  2. I hear you. And -- I know with certainty that you were the best dad you could possibly be, and the best dad Sam could ever have wanted, even when you weren't perfect, even when you didn't insist on putting down the iPad, even when you didn't know the implications of the decisions y'all were making -- which were the best decisions you knew how to make. I am holding you in my heart as you continue to grieve.

  3. Nothing like the gift of hindsight to make you second guess yourself. Please remember decisions are usually made because we truly believe that at that point and time it is right thing to do.I bet there is a lot more that you would not change. It would be lovely to see a list of things that you feel were perfect, I bet it was a lot longer list.
    Blessing to you.


  4. No matter what you could have done, the result would have been the same. You all did the best you could. Love your other kids to the max and give them freedom at the same time. Love everyday G-d gives all of you. See the best.
    There's no choice. Those are the cards you've been dealt. It's not a computer game with "undo."

  5. Life your life backwards FROM NOW ON. Do all your "if's" every new day.

  6. thinking of you and your family. sammy was loved by you all and his grandparents, family, and extended family. you were there protecting him as much as you could and that is what counts.

  7. My experience with adults who've had cancer is they have a strong desire to live normally and be viewed normally. I suspect that parenting Sam and his siblings as you "normally" would, which, sadly for all of us does sometimes include getting mad, probably reassured him that you were still there for him as a parent and that you believed he would get better which, by itself, was a gift to give him. There's not a parent out here who doesn't wish we could do some things differently, but I also think if we constantly lived with the thought of "this could be the last" whatever, we would drive ourselves crazy and not necessarily do our kids a favor. You let Sammy be a kid as much as you could, allowed normalcy where you could, and your kids all know how much they are loved.

  8. Torn between wanting to validate your emotional process and wanting to reassure you that you and P (and the kids) did all you could - that's clear from your online reports and in that moving, sad and meaningful video. Also noticing that whether or not you'd meant to, you actually have written a reverse Dayenu of sorts - wondering what would have been enough, or what wasn't enough, or how you feel you could/should have done more is a natural part of the inquiry, if perhaps not particularly helpful. Just know that as you are living forward and here, in this infinite internet space, that many of us are reaching back at you in support, more of us every day.

  9. My heart breaks for you, Michael!

  10. Michael, you gave your love with every kiss to Sammy keppy. You always did your best, and continue to do so. You are a loving dad to Sammy, and I know he felt it and feels it still. My heart is with you.