Archive for October, 2012

FTIAT: Ode to Jay

Sheila (Mary Tyler Mom) has changed my life with her words. You have heard about some of these changes in my many reflections on Donna’s Cancer Story, her blog series about her daughter’s battle with cancer. You will hear about the other changes in time.

While I first knew Sheila thanks to her daughter, I have come to see her as much more than “Donna’s mom.” She is a mom, an advocate for social change and for hope, and an exceedingly rare writer whose powerful words unify intellect and heart. She makes me laugh when I least expect it. In the face of her words, I have no room left for my compulsive overthinking; as long as I am reading them, I am immersed in the world as seen through her eyes. This is a gift for which I am exceedingly thankful.

Thinking back to when I first read Sheila’s words, I am floored to think how little I then understood how much knowing her would change me. It is an honor to know Sheila, to have hugged her, and now, to feature her here today.

Ode to Jay

I remember it clearly. It was a cloudy November day. I was playing with my eleven month old baby boy. I turned my head and he was smiling at me, so full of joy and love. I loved him, too, but in that moment, it was like meeting him for the first time, as if, almost, I had just birthed him.

My son was born into a complicated family. His older sister, Donna, three and a half years older, was in treatment for an aggressive brain tumor. She was prevented from visiting the hospital to see him and for his first week of life had to be in a different room, as she had RSV, a cold strain that can be fatal to infants. She died when Jay was just shy of ten months. He was a brother without a sister, just as I was a mother without a daughter. None of that was right.

Much of Jay’s first year is fuzzy to me, a swirl of relapses, surgeries, chemotherapies, fear, dread, and sadness, none of it much related to him. His infancy squeezed in between hospice visits and hospitalizations. I nursed him, thank God, because I honestly believe that if I hadn’t, our bond would have been tenuous, another casualty of cancer.

For Jay I am thankful. Every day I thank my lucky stars that I have him to care for, to call me Mom, to fuss over. My grief after Donna’s death might very possibly have consumed me, had I not had Jay to feed and bathe and diaper. And love. Read more…


Gentle suggestions for my perfect 34th birthday present

“A shoulder massage sure would be nice right now . . .”

“You know what would help you build strength? Giving me a long foot rub. You should work on that. For you. (You’re welcome.)”

“Are those idle hands? You know what they say about idle hands–”
“Yes, I will play with your hair, Deb.”

My fiancee, Ba.D., is treated to statements like the above anywhere between five and 200 times a week. He knows even more keenly than you my fondness for much communication. Yet somehow, despite my gentle reminders about his keeping pleasantly (for me) busy, he has decided I am difficult to buy presents for. Read more…

FTIAT: I will not sit idly by…

Chris (From the Bungalow) and I met face to face in March 2012, when I flew to Chicago to join him and his wife in shaving heads for St. Baldrick’s. Before that meeting, Chris and I had been blogging buddies for nearly a year. In light of our frequent thoughtful exchanges, I fully expected my introversion to be subdued even in the face of our first meeting. It was.

If you’ve been here a while, you know Chris inspired me to read the life-changing Donna’s Cancer Story. You know implicitly of his eloquence and ability to persuade; but for that, I would have a much fuller head of hair right now. What you may not know is that he’s also a father, a musician, a music therapist and one hell of a friend. My offline life is better for knowing Chris, and I trust you will understand why when you read his powerful words below.

Recommended post: Blissfully Bald

I will not sit idly by…

“They’ve ruled out everything else. I have ALS.”

As I listened to my mom speak those words, they didn’t make sense. Somehow, it never really registered with me until just now, right after I typed them. There has been an underlying malaise these past few months following the loss of my parents’ house to fire, and shortly thereafter, the sudden loss of my maternal grandmother to cancer. But that diagnosis… those words? Superficial until now. I didn’t want to accept it. I couldn’t.

Me, age 18, with my mom and grandma about two weeks after losing my grandpa to cancer. We lost my grandma this year.
My mom is dying, and I am helpless to stop it.

Lou-fucking-Gehrig’s Disease, terminal in 100% of cases. Terminal? How?! How do we not know a goddamn thing about this? How did this happen?! Forget about that. How is my mom handling her prognosis? How is my dad handling it? My sisters? Me?

What am I supposed to do now? What is my mom supposed to do? I have more questions than answers. That’s an overwhelming place to be. I’m sad and angry. She lost both of her sisters when they were in their 30’s, lost both of her parents to cancer, and now this? An innocent, loving, caring mother and grandmother sentenced to death at some not-so-distant point in the future while her body slowly shuts down? Bullshit. It’s not right. It’s not fair.

And yet, there’s this voice in my head that keeps whispering to me… Read more…

%d bloggers like this: