Sunday, March 30, 2008

Food is Love.

On March 1, Stephen and I cooked dinner for the first time in 10 months. I honestly couldn’t remember where we kept the frying pan, but somehow managed to wrangle schnitzel onto our plates before 8 pm. Since then we’ve gotten a lot more comfortable: replenishing the spice rack, trying out new recipes (turkey meatballs with raisins and pine nuts, anyone?) and ordering in only twice. Late at night, I find myself thinking about tomorrow’s meal. I’ve even started hitting the food blogs.

I don’t really enjoy cooking, but eating is another matter entirely. I can unequivocally remember complete meals from more than 20 years ago: my mother’s bittersweet mocha almond cake, lemony Israeli salads, the epiphany of my first mango. In the first grade I went to a heuristic school in Norman, Oklahoma. There were no defined schedules or classrooms or requirements. We could read all day in the loft or play with pattern blocks for hours. I spent most of my time in the kitchen making blue lollipops. And I can tell you exactly how they taste. I guess I’ve always been a girl who loves her food.

The weekend after Toby was diagnosed, my brother gently forced us to make a list of items we needed help with: transportation, errands, food. I could barely put a sentence together, but instinctively knew that making dinner for the foreseeable future was impossible. And then an angel named Heather Lester Rodd walked into our shattered lives, and gracefully started the tremendous task of providing us with almost 300 nights of home-cooked meals.

An amazing Brooklyn community rallied around us, friends and strangers alike, who lovingly cooked and delivered the most incredible meals. No matter how awful the day, we reclaimed our humanity around the table, with food and wine and wonderful gifts for toby, tucked in among the foil-covered dishes. We still can’t believe our luck.

It has been good to get back to making dinner. It gives us a sense of normalcy. Toby likes to help us cook. But not a day goes by that we don’t think of those 300 meals. You gave us sustenance and hope during a time of indescribable darkness. And we will never, ever be able to thank you.


On a non-food related note:

The last 3 weeks have been wonderful. I’m sorry to have not updated sooner, and I didn’t mean to make anyone worry. Toby sailed through this most recent round of chemo, with no diarrhea, no vomiting and good counts. We have had 7 glorious consecutive days of no hospital visits (interrupted only by a dash to the ER last night with a fever). Best of all, Toby has been able to spend 2 full weeks at school. He is very, very happy: chattering about his teacher Marina, show+tell, what he ate for snack, how he went to the bathroom alone, where his cot is, what songs Victor sings. His backpack is full of artwork, not bandage change kits or hospital masks. He doesn’t think about medicine, shots or scans for 6 whole hours. And when I pick him up, he is surrounded by smiling, healthy children. Is this real? The people I pass on the way home see just another kid sitting in a stroller. They don’t see his tubies, scars or sweet bald head. And they can’t possibly know what he has been through and the heroism he exhibits every day, to get out of bed, have breakfast and go to school. I am so proud of my wonderful boy.

We feel like we have been given a gift these last weeks. But sadly are very fearful of the coming days. On Thursday we begin a full work-up again: CTs, MIBG scan, and bone marrow biopsies and aspirates. Scan week is emotionally and physically exhausting for us and especially for Toby. We are hoping for good news.

Much love,
mooki + stephen


Deqlan said...

Praying for great results and for scan week to go as smoothly as it can - prayers continue
God Bless
Samm mom to Deqlan stage 4 dx 25/05/07 ned 16/01/08

LindaSueBuhl said...

Thank you so much for this uplifting updating (is up my word for the day?)! I am a woman who loves food also so I completely understand the joy of sitting down to a meal with your loved ones. My little family pray before meals and usually Toby's name is in that prayer. A friend of ours describes the week of testing as having a scanxiety attack. Good term. We will be praying for good reports and praising Toby's wonderful time being a wonderful boy!

Anonymous said...

You give US sustenance and strength and hope with your courage and your grace and your love. Cooking for you (or, rather, delivering my wife's brilliant cooking) was a gift to our family. Every day, we were reminded of how love does truly triumph over everything.

You're a wonderful family. From afar, though we feel very close to you, we love you.

Vickie said...

What a satisfying journal entry today. I can completely relate to the power of shared food and community love. Also, the sweet pleasure of letting you heroic child share the routine of good health. Good luck with the scan-o-rama this week.


Anonymous said...

Thank you thank you for the post. As much as it leaves me wondering when I check your blog daily, I fully understand the desire to savor these feeling-good weeks with Toby instead of parked in front of the computer.

"No news is good news," as they say. If anything urgent were to come along, I'm sure your brother or somebody would post something.

I'm so happy that Toby is back in school and enjoying his teacher and friends. I can't describe how thankful I was to read that this morning.

I am sending up many, many prayers for excellent scan results.

Please, God, please.

I enjoy cooking, but it excels into pure fun when I have my little helpers in the kitchen with me. Their enthusiasm and eager helpfulness add so much sparkle to the most mundane meals. Even PB&J is an adventure.

What is Toby's favorite food?

Anonymous said...

Dear Mooki,

It is so great to hear from you and to learn about Toby's wonderful days at school and your families' happy return to the kitchen. Not a morning, afternoon or evening go by without thoughts of you all and prayers for Toby.

While I cannot really imagine what it's been like to go through your past ten months, I feel like few people, truly, could do so with the love, warmth, gratitude, richness and presence that you guys have. As I think about you all, I'm humbled every day by your experience, by Toby's strength by the power of community.

I love the way you recognize and represent your world.

I'll be praying that this week brings good news for Toby so that he can enjoy spring in Prospect Park, maybe some of the season's first ice cream on the avenues and his wonderful school activies without too much interruption.

Much love always,

Anonymous said...

What a pleasure to read this sweet entry. Now I want recipes!

Hope we can be here with you through the bitter and the sweet--

Nancy W.

Anonymous said...

you made my day.


Anonymous said...

Good luck this week!! We're all thinking of you and praying for good news.

All good things and all best --


Anonymous said...

It warms my heart to think of Tobi involved with other children and participating in all the preschool activities I know he must be relishing. Following a daily routine with other kids that is filled with learning and fun... It makes me happy for you all.

You are cooking with gas, even when you are not in the kitchen.
Much love,

Mirm said...

Ah, Mooki, what a joyful post! We're thinking of you all and sending every good thought your way for Thursday.

Warmest wishes,
Mirm and Bryf

Anonymous said...

Thank you for sharing news of those good times and for telling us about those wonderful people who continue to help and support you. I'm sure you have stored a lot of strength to carry you through the next treatments, and I hope Toby will react well. My family and I send our love,

Anonymous said...

Yay! Yay! Yay! What else is there to say- other than we're sending lots of love your way.
Martha, Chris, Nils and Jens

Anonymous said...

I should have learned a long time ago not to check Toby’s blog while at work. I inevitably end up in tears because I am so touched by the strength that you have as parents and the love that you have for your children. But today, I was brought to tears because I was so happy that you had two great weeks. It makes me smile to envision Toby chattering about his day at school. May you be blessed with many more weeks like this. Much love from one of your many online supporters. Thank you for sharing your story.

Anonymous said...

Hoping and praying that all is going well and smoothly for all of you.

May your weekend be restful.

Anonymous said...

I am so happy Toby is enjoying school. I will be praying that the scans go well.
Love always
sarah jo

Anonymous said...

Now I sit and pray for good, clean, healthy results. I can understand why someone else called it "scanxiety."

May God bless all of you.

Anonymous said...

I've just heard from Yochi that Toby's scans are clean. What a great relief, we are so happy for you! May you all go from strength to strength.

Anonymous said...

Thank you, Thilde, for sharing such wonderful news!!!!!!

I've been following Toby's story, but I still don't know much. Maybe this is a dumb question.

Are there other tests outstanding that we're waiting for, or is Toby in the clear for now?

Thank you!

Anonymous said...

Hag Sameach! We hope you all enjoy the Seder and that Toby gets to ask the questions!