Monday, November 2, 2009

Unlimited Ride

It's all so good around here. And it seems I've forgotten how to write. Mostly I drink the beauty of normal. We ride our bikes to soccer in the park, we read chapter books. and we have regular tooth fairy visits. Not a day goes by that we don't count our blessings.

The fear is still here, but the despair has grown soft. Tonight at bathtime, Toby and I were digging through the giant bins of medicine that still crowd the shelves, looking for colace to help with the side effects of our current investigational drug, ABT-751. We extracted bottle after bottle of hydroxizine, gabapentin, megesterol, morphine, and dilaudid--bizarre aggregates of chemicals that we're intimate with. At the very bottom we found a bag of syringes. They have little yellow caps and are filled with clear liquid. We used at least two of them every single day for the first 18 months of Toby's treatment, flushing his tubies before and after every infusion. What are these yellow things again? An empty one has been hanging out with the bath toys, but surely that can't be it. "Toby, do you remember what these are?" I ask. He laughs at my ignorance and says, without missing a beat, "It's heparin, Mooki. Like, duh."

Not much makes sense to me anymore. I keep a photo of Erin on my desk at work and finger the lanyard beads like a rosary. I miss Max viscerally. I mourn Owen and Pierce. Every night before bed, I catch up with Liam, Will, Evan, Nick, Erik, Sam, Jack, Hans and countless others, each a distinct, glorious child.

I ask unutterable questions, lose words, and research hearing aids. And I make Halloween costumes, mail college applications and kiss my boys over and over.

Thanks for dropping in.
Love, mooki


Just Me said...

Such a wonderful, smart, vibrant boy. His Halloween costume ROCKS!

Thank you so much for the update. I'm pretty sure your readers well understand your desire to savor every moment with your children and husband instead of twiddling time away at the computer.

May God continue to bless you all.

Vickie said...

Of course I can download and print endless copies of Toby from your site, but I would love so much if you could send me a copy of his school pic whenever you have a spare. He has a place reserved on my friends wall!

I will make it to NYC one day. I promise.


Anonymous said...

THE BEST WORDS I'VE SEEN IN A LONG TIME.... It's all so good around here!!!!!!!!

Anonymous said...

What a great kid ... thanks for sharing the fabulous halloween photos and beautiful words.

Anonymous said...

Dear Mooki,

"Drink the beauty of normal..." and enjoy every sip.

Hope to see you guys, soon.


kayla said...

Dearest Mooki,

Thanks for the update. I check the site all the time and I am so pleased that Toby is doing well. Can't believe that Yoni is off to college next year.

Love the Halloween costume!

Love to you and your family,

Lisa, David, Josh, Adam and Kayla

Lynn Bernstein said...

I check the site from time to time... you and your family have left such a powerful impression on me. I'm so glad to see that Tobi's growing and flourishing. Good luck and best wishes to Yoni on the college process.
With love,

Anonymous said...

The Perfect costume!! I smile every time I look at it. You and Steven and the boys are remarkable, and I am thrilled by how normal all seems. Bathe in it.

Anonymous said...

Just thought to check this site while having a feeling tht I was looking for something online, but couldn't remember what. So poignant and lovely to read. Thank you.

Nancy W.

Donna Ludwinski said...

Rejoicing in your beautiful "normal"! Toby is such a perfect boy...I am sooooo happy for you Mooki, wishing all worries could completely evaporate....forever! There IS good news in this world. Thank God.

nati said...

beautiful, mooki. just beautiful, content and writing alike.

Anonymous said...
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Menachem David said...

Great to see that things are so good! I've been praying for Toby's health every day, and b"n will continue to do so.
Looking forward to only good news from here on...

Jennifer (Kids Cancer Crusade) said...

Praying all continues to go well with your family. My heart is with yours as it breaks for the other children having rough times. Staying hopeful for a year full of miracles.


Anonymous said...


Happy New Year. Let's catch up. 718-753-1323.


Anonymous said...
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Anonymous said...

Hooray! I am so glad to hear you are savoring your days.

I happened on your site a long time ago when another Brooklyn mom told me of your son's illness. That led me to Erin and I followed Erin and mourned Erin. Erin's site led me to Foster'site and now I have all of them in my prayers.

I wish you joyous days.


Just Me said...

Spring is in the air, and I'm thinking of all of you.