Thursday, December 4, 2008

Death and Cookies

In the 20 months since Toby got sick, Stephen and I have watched 30 children die. They are children we shared rooms with and children we came to love through their parents’ writings. Their names are Gus, Jack, Max, Katie, Lillie, Lucas, Penelope, Brody. Their parents cope with unfathomable grief.

We think about death a lot, over here. It is forever knocking at our door, lingering in corners, forcing us to ask, “is today the day?”

Death has come into our life in an unnatural way, through the wide eyes of a beautiful child, disguised in creamy skin and laughter that sounds like bells. Death winks at the most horrifying moments. Like when Toby says, “Next August 26th, I want to come back here (the beach in Sanary-sur-Mer, France) and do exactly what we’re doing now, ok mommy?”

Recently I saw an old, dear friend. We haven’t been in touch since Toby got sick, she lives overseas, but she reads this blog. She was the first person in 20 months to ask if we think about Toby’s death. It took my breath away and I laughed with relief. Yes, we do.

But we also focus on the joy of each day. We stare death in the face, make tea, eat chocolate, plant flowers, tickle each other and spend a lot of time playing with trains on the playroom floor. We are fully present, grateful for our children, our family, our community. Death be damned.

So now you know what we think about. And if I haven’t scared you away yet, perhaps you want to help. I have a simple way, and I’m not kidding: Buy Cookies.

Cancer kills more children than any other disease. I’ve said it before, but time is running out for our kids. Every 16 hours a child with neuroblastoma dies. And lack of research dollars bars the way to a potential cure. By buying cookies, you can help to level the playing field. Please visit, order something delicious, and give our children a chance at life.

Thank you.



Vickie said...

Life is in all of the tiny stitches: each cup of tea and nugget of chocolate, each circuit of the train around the track, and each cookie. Thanks for expressing this so beautifully.


Anonymous said...

WOW. This is brilliant, true, and terrible. This is exactly what I think of everyday, only without the crystal clear articulation. The loss of every beautiful child weighs on me every day, and meanwhile I can't figure out how Erik got to be so old. Blessings to you and sweet Toby, as you continue to live a magnificent life.

Anonymous said...

I suspect we all think about it.

I know that when I look at my children I think of Toby, and I wonder how and why such an evil disease could lurk inside so many beautiful children.

While the possibility of death is all too real, it can't consume you, either. It must be a hard balance to maintain.

Your words keep me grounded and keep me thankful. I pray for Toby's continued recovery every day, and at the same time I selfishly pray that my children are never faced with such frightening circumstances.

I hope your experiences in Philadelphia went well, and the treatments are performing miracles for Toby's recovery.

Dina said...

What moving words and the experiences even moreso I know. I'm going to get my social action teen group kids to raise some dollars for the cookia campaign, this is a great place to focus our efforts!

larajean1 said...

I've been following your story for many months now and praying hard for Toby and all of you. I, too, have a 5-year son who has experienced cancer (ALL) and I live in Brooklyn. I've never commented before because I just felt like I had nothing of value to say! I still feel that way but wanted to let you know that I (and I'm sure many more) are out here praying and hoping for you.

nati said...

mooki -

i don't know what to say except that you are a profoundly special person and that i bought some cookies.

Anonymous said...

Wishing you all a happy and miraculous Hanukkah.

Anonymous said...

For Yoni, isn't this the year to go off to college? Hard to believe. And for Toby -- kindergarten! Amazing. With every wish for peace of mind and health for all of you.

LindaSue said...

Thinking of your beautiful family on this final day of 2008 - like so many people I'm sure you are ready for this year to end and a brand new shiny year open up for us all. Bless you, Toby the Brave! and thank you for reminding us all what is important and what is merely urgent. Love is important.

Anonymous said...

The cookies are the BEST we have ever tasted! Everyone should try some. Our favorites are Liam's Lemon and Oatmeal. We'll be ordering them throughout the year, especially as gifts for our friends who are keeping you in their thoughts and prayers. Toby, I'm not even sharing any with my squirrels!
Love You All, Grandmother P.

Anonymous said...

Just thinking of you. I'm sure your holidays were lovely and that Toby is enjoying school.

You're always in my thoughts and prayers.

LindaSue said...

I check every week -always relieved to see no new posts - trusting that means Toby is busy being the beautiful creative little fellow he was meant to be - we still pray for all of you - you define family in such a positive active way.

Just Me said...

Thinking of you and hoping all is well.

Anonymous said...

Just thinking of you - I check periodically - and hoping no news is good news and that you are all well, happy and healthy

Anonymous said...

Wishing you all a sweet and fun-filled Pesach, and many more.