Wednesday, September 26, 2007

Intimacy and Uncertainty

I prayed my heart out on Yom Kippur.

Since Toby got sick, I’ve had an ambivalent relationship with God. On good days, I understand that God didn’t send this disease. On bad days I rail against God’s silence. And most days I feel a tremendous loss in my connection to God.

I haven’t been able to pray on my own. And so on Yom Kippur, I went to synagogue, in search of my community, in search of warmth, in search of a space where I could have a talk with God. I chanted the melodies and let my soul be lifted by the beauty of ritual. I felt myself enter the lines of text, winding through the letterforms like the paths of a most beautiful garden.

It was during the amidah that I felt myself open up to the possibility of something. So I covered my face with the prayerbook and let God know how I felt. When I came up for air, Yoni remarked that I had tattooed the book with my tears.

What happened next surprised me.

As is customary, the ark remains open during the entire concluding service of ne’ilah. But at PSJC there’s a wonderful opportunity for families, couples and individuals to ascend the bimah during this time, to share a moment alone/together in front of the open ark and Torah scrolls. For more than an hour, I watched as the ark became a shaftway to God. Again and again, parents wrapped themselves around their children, whispering their wishes and prayers and dreams. Couples embraced, hands reached out to touch the scrolls. It was pure theater and I watched hungrily, with joy and sadness. Personal became public and intimacy crowded out every other feeling in my heart.

I desperately wanted to be one of the families hugging each other in the sweep of narrative, history and hope.


In many ways uncertainty has crowded out intimacy in our lives. We wake up each day, unsure of what will happen by evening. And this morning, for the first time in a long while, I can unequivocally say that Stephen and I feel hopeless.

Yesterday we met with Dr. Kushner, to discuss the much-anticipated next phase of treatment: 3f8 antibodies. After 6 cycles of high-dose, highly toxic chemotherapy and after 14 rounds of radiation to Toby’s shoulder, we are ready to move on. Toby still has refractory disease, but some children do go into antibody therapy without being completely “clean.”

Instead we heard more bad news. Although most of the scans came back stable, one of the bone marrow aspirates showed neuroblastoma cells. This is very, very unusual and Kushner is uncomfortable giving Toby antibodies at this stage. He would like to do a 7th cycle of chemotherapy, in a final, super-aggressive, off-the-charts attempt to kill the cells in the marrow. He admitted that MSK doesn’t do this often. He admitted that Toby is highly unusual. And he admitted that he doesn’t have much data to show whether this will be an effective course of treatment.

We still have a lot of unanswered questions and are unsure what our next steps will be. My brother will most likely post some of the medical details over the next few days.

Intimacy is what makes me feel human, but it is uncertainty that sits on all our shoulders. Yoni worries, asks a million questions, demands the whole truth with no sugar coating. Stephen and I open a bottle of wine at 5 pm, walk to the corner together and stand in the middle of the sidewalk as the tears fall. Toby senses the vibrations of uncertainty and cannot sleep. Last night I lay in bed with him after he told me that he was nervous and scared. I reminded him to think of good things: Randy and the whoopee cushion, the mango smoothies at Lonelyville, harvesting a potato in Prospect Park. But he cried and said, “the bad things are too big, Mommy.” Over and over I tell him that everything will be alright, We curl up together and see the moon through the blinds. It’s a full moon, full with experience and life and quiet. Toby eventually fell asleep.

And today we blink into the wide gaping hole of a new day, heavy in our hearts, craving intimacy for our family.

We ask again for your support, presence and love. You have done so much for us already that I hesitate to ask again. I will never be able to write all the thank-yous for the beautiful, thoughtful gifts, the delicious meals, the blood, the money, the letters and visits. Please forgive me. And know that through you, we can experience life as it should be.

Love, mooki and stephen


Anonymous said...

This is just so, so awful. Like you, I cannot understand why such a beautiful and wonderful child is going through this - I'll never understand why any children go through this. Please know that I am praying my heart out for your family and for your dear boy. Your love and tenderness for Toby reverberates through your words. I cannot imagine your pain. I can only pray for it to cease.

Anonymous said...

three other people i know checked the blog this morning. we all called each other and cried. and prayed. none of us know you, toby, or your family. the power of prayer......we are praying praying praying. Please g-d, heal this little boy. Please g-d, heal this little boy. We are thinking and praying all the time.

Anonymous said...

Dearest Mooki and Stephen,

I have waited and waited for a posting, and worried that it was taking too long. I hoped that the holidays were the reason, and not bad news. I am so sad that Toby is speaking of the bad things that are too big. I am so pained that Yoni must carry this burden in his young heart. I am beyond words in acknowledging the agony the two of you experience every moment. I can only speak of love, and of desire. Casting about for an understanding of how I feel and what words I might use to express myself, I looked up the word “desire” and found the Latin root, de sidere, "from the stars." Each of us, in our particular ways, is wishing upon the stars, waiting for what the stars will bring. We pray that God intervene, we pray that the physicians heal, we pray that the universe becomes merciful. Our hearts are with you every day, and our love for all of you is abiding.

Betsy and David

Anonymous said...

I just closed the door of my office and cried my eyes out. I would do anything to make all this go way and to have a healthy Toby back. If I could take your pain away I would.

--Susan, Aniella, Ina Zaslavsky

Gisele said...

i too stood at the ark and prayed. i prayed for my family, especially my father, who faces continous health challenges. I prayed for my mother and my brother and me to be strong for my dad. i prayed for my new husband and his family. and i prayed for toby, and for you mooki, and stephen and yoni to find peace, health, and happiness in this new year.

please carry the hope that sloan kettering does things that other places don't do, and that they are the best. know that they are doing every single thing they can for toby, and trust in their abilities.

mooki, you are such a strong role model for me, and even though we haven't seen in other in some time, i think of you often as I go through life, trying to model certain behaviors after you.

my thoughts and prayers are with all of you.


Anonymous said...

Dear Ones,
We sit here crying until our eyes are red and swollen. We picture you standing on the street corner in tears, and we weep again and again. If only we could make this pain go away - if only. Dear precious little Toby think about Randy's songs, the funny noise the whoopee cushion makes, the love of big brother Yoni, the tender arms of Mommy and Daddy folded around you and of grandparents, uncles, aunts and cousins who cherish you.
You bring us such joy. We watched the same moon that you saw through your blinds. It was the Harvest Moon, so bright and full. That night we wished upon the moon for your return to good health and a happy life.
Love, Grandfather Bernie & Grandmother Merci

Anonymous said...

I sit here at work, tears streaming down my face. You don't know me, but I am a Park Slope neighbor with a child Toby's age. I think about your son and your family on a daily basis and pray, pray, pray. I cannot imagine this terrible thing your family is experiencing and I have no soft thoughts or answers. But know that there are many who are sharing at least a small piece of your agony with you. The arms of this community are around you. Much love to Toby.

Anonymous said...

I am crying and praying right now for a miracle. They happen every day, to ordinary people like us, and I see no reason why a huge miracle couldn't take place for Toby right now, today.
FROM MY MOUTH TO GODS EARS- Please Please Please.
You are all so loved!
Perhaps one of the miracles that happens is the love that Toby brings to all of us. Friends, family, neighbors and strangers. It's a beautiful thing. For that I am thankful, yet I wish so much more for you all.
I pray for you to find hope again, and know of all Gods love.
I pray Toby will come to believe & experience that the bad things are never too big for God to handle.

Anonymous said...

I am a friend of the Witts: Gretchen sent me to your blog.
As I sat in services this Yom Kippor morning, the music swept me to the beauty of all the children I had seen at MSK on Friday...and to the parents waging their battle with them. I will keep you and Toby in my thoughts, and I will fervently hope for you that the year ahead turns this agony into a memory with a happy ending.
May your year ahead find your beautiful Toby travelling on a path toward wellness.
I will keep you in my thoughts.

Anonymous said...

I've been saying for months that this blog is not "work safe" and today is yet another validation, so many people spread out far & wide sitting at their desks crying in response to your beautiful words. Your writing is so moving, yet it's so hard to swallow the content it conveys. Thank you for opening yourselves and sharing with the community that supports you. We who witness your pain and tragedy are lucky to have connected to you yet we remain unable to do the one thing that would solve this unimaginable horror.

anna said...

Like others, I, too, am reading this in my office. As the tears started, I thought about shutting my door, but I selfishly left it open hoping that maybe a co-worker would come in and cry with me. They all ask about Toby, and I know that they care and are praying with the rest of us. For the past week, I've been trying to imagine the glass half full -- hoping that no blog posts meant you were all enjoying the good weather and taking advantage of this chemo-free time. I kept trying to ignore that nagging thought that something had happened, and now that I find out it has, I'm grief-stricken and angry and more baffled than ever about this chaos that seems to have taken over.
I will pray -- here at my desk, on the way home, as I fall asleep tonight -- and I'll ask God for everything and anything good for each of you. Love, Anna

LindaSueBuhl said...

Psalm 123: I lift up my eyes to you, to you whose throne is in heaven.
As the eyes of slaves look to the hand of their master, as the eyes of a maid look to the hand of her mistress,
so our eyes look to the Lord our God, till he shows us his mercy.
Have mercy on us, O Lord, have mry on us, for we have endure much contempt.
We have endured much ridicule from the proud, much contempt from the arrogant.
Toby has endured the contempt of cancer, he continues to feel the pain of the proud and arrogant cancer. We are praying for Toby to be mercifully rescued and healed of pain and fear. We are asking with confidence in God's faithfulness, incredible love for Toby and the knowledge that we understand so little.
We continue to pray for Toby and your family- we don't know why this is allowed to happen. Thank you for the privilege of praying for you. So incredibly sorry for your pain and loss of sense of security.

Anonymous said...

I can't find the words to say what I feel. My head is ringing with a soundless, wordless, pained, desperate prayer for Toby's healing.

The greatest pain for me is seeing Toby being overwhelmed by "the bad things." I'd give my very soul to restore his trust and his health.

Regina said...

Dearest Toby, Mooki, Stephen and Yoni:

I add my tears to those of so many others who have listened to your silence over nearly two weeks-- and now read this post. I was sorry to miss seeing you in our shared home community on Yom Kippur--but I want you to know that, while you were taking refuge in PSJC, I was sharing your last blog posting from the pulpit in Flushing. The circle of those touched by and sending healing energy to Toby and all of you continues to expand with our tears.

Psalm 13 begins: "How long, God; will you forget me forever?" Its ending verse is conventionally translated as "I will sing to God, for [God] has dealt kindly with me"--but the original Hebrew does not specify goodness or kindness. It simply affirms that God "has dealt with me," without specifying how.

Translated more literally, I understand this verse to mean: "I will sing to God, no matter how God has dealt with me." My song may be one of grief or rage, but I will not stop singing. I will remain connected and loving.

Thank you once again for sharing your loving song of connection with all of us. Especially as we approach Sukkot--the holiday of fragility and vulnerability, as well as of abundance--may the blessings of this song continue to spread healing in ways that we may not even be able to imagine now.

With much love,

Anonymous said...

i have been so worried these past days waiting to hear the news. as quickly as we share happy times, we are never eager to share the bad ones. but thank you so much for taking the time and the pain to share with us. as painful as it is to know the truth, at least we can be there for you. it is always OK to ask this of us. i hope so, so badly that Toby can feel good, can have some good moments and some smiles. i want so much for the bad things to go away. so i will spend my time, my daily meditation, asking for this gift. i do believe that our hearts and minds have a voice that is louder than this disease and we will be heard. i know that the future is impossibly hard to contemplate, so please please know that we are all here NOW.

your friend,

Anonymous said...

May our collective tears create a raging river of care and hope to buoy all of you. May our collective prayers urge miracles forward. May our collected funds, foods, and friendship sustain you when you feel weakest. I'll now call MSK to add my platelets to the pot. With you, with you ...

Anonymous said...

All of the tears, may all of these tears create an ocean to carry you and your family away from suffering. It seems to me that somehow the well of your strength is endless and so amazing. I am thankful that there are doctors willing to push the limits to help you, but so sorry that the limits have to be pushed. I wish there were more to say... Good luck, sending you love and positivity, may the healing hands do their good work to your advantage.

Anonymous said...

Like all those before me and those who will write after, we cry with you and wonder why Toby has to endure this suffering. Your postings have allowed all of us to experience more intimacy in our lives, with our children and each other. Know that you are not alone, you have the support of family, friends and strangers, all of whom have come together to pray for Toby's safety and healing.

Anonymous said...

There is no need to thank us, to ask for forgiveness - we are here for you in a way that we're supposed to be - neighbors caring for each other. There are times in our lives of need, and times of surplus. No need to thank us - thank *you* for allowing us the mitzvah and asking for and accepting help.

Anonymous said...

Mooki, Stephen et al - Our (and I do mean "our") thoughts and hopes and prayers are with you. Your writings evidence that you have open hearts - unusually open hearts - and beautiful souls, and I know Toby feels that from you and gives it back to you. I wish that I / we could make it better, but I / we can offer love and prayers and hopes and assurance that we are thinking of and praying for you. - A neighbor in and around Park Slope/Windsor Terrace

Anonymous said...

Dear Mookie, Steve and Yoni, Feeling helpless to find words to comfort you in your great distress, I turned to poets, and found this one by Kahlil Gibran: "The Pearl"
Said one oyster to a neighboring oyster, "I have a very great pain within me. It is heavy and round and I am in distress."
And the other oyster replied with haughty complacence, "Praise be to the heavens and to the sea, I have no pain within me. I am well and whole, both within and without."
At that moment, a crab was passing by and heard the two oysters, and he said to the one who was well and whole both within and without, "Yes, you are well and whole; but the pain that your neighbor bears is a pearl of exceeding beauty."
With unceasing prayers, and love for Toby and all of you, Aunt Blanche & Uncle John

Anonymous said...

I was so shocked when my mother told me I have been checking the blog daily except I hadn't checked it today but I knew something was wrong when my mom didn't sound joyful and happy at first I thought it was my father but when my mom said Toby I was shocked. I pray every day and will continue to do so along with my chidlren. I can just imagine how you feel as my youngest is close in age to Toby. Much love to you all and I will continue praying for a miracle.
Love Always,
sarah josephine

Lloyd said...

Dear Mooki

I feel for your whole family.

It is really beyond words for me to speak.

I wish many blessings for all of you, and that you find and maintain the strength you need.

Since my father died, I am going to morning minyan daily. I will add Toby to my prayers for healing, to open whatever doors can be opened through the mysteries of faith and care.


Anonymous said...

And now to add unimaginable treatment decisions to Toby's unimaginably invaded body and to all of your unimaginably invaded souls. Your connection to and love for Toby will see you through this latest. It's love, at the end of the day, that is the miracle of life, and this miracle you have in abundance. I wish these posts could provide to you the smallest bit of sustenance; I wish they could do for you what you do for Toby, constantly. Know that at least virtually, we are holding you in our arms as you hold him in yours.

Gretchen said...

Mooki and Stephen - Early in our battle, someone we didn't know left a quote on Liam's blog that resonated so clearly with us and has helped carry us along. It's a quote from the great Sir Winston Churchill. I'm hoping it will give you some solace.

"If you are going through hell, keep going."

Gretchen, Prince Liam, Larry and Princess Ella

Susan said...

Strength to you, Stephen and Toby. After our visit on Saturday I was hoping for an update from you about being on the Today show and the mayhem and excitement surrounding that event. Instead, I sit here with tears once again in my eyes and sending you a huge hug. I wish that I could make a Magic Stained Glass Sword to cut out all the pain, uncertainty and sadness.

Strength to you.

Anonymous said...

you don't have to ask again...we haven't stopped praying and sending our love and hope.