La La How The Life Goes On

Let’s Recap!

Posted on: April 11, 2010

I’m the Mama.  I’m a former political animal and professional fundraiser who has taken to raising the chill’ren and imagining herself a writer in some fashion.  My cooking is horrible (I am learning), my housekeeping skills are what my father would have called a step above “slatternly” (please buy me a roomba), and my ability to not say the F word is hindered by the pure joy I get in saying it (redacted). My personal limitations notwithstanding, I have a rather fabulous life with my husband, the Dada, and my daughters, Bambina and Baby Sister. In short, life is pretty much everything I’d ever want.

Before you start hating on my nauseating Ode to Domesticity there, I will add in the balance that I have a long and checkered health history of random, rare and life-threatening diseases.  I take a sick pride in that, thank you very much.  After all, there’s not much else to do about it, is there?  My nemesis is called Dyskeratosis Congenita. My family has a rare mutation of the rare disease that visits various and upsetting conditions upon us, mostly involving our lungs, skin and bone marrow.  This means my family has to get our skin, lungs and bone marrow checked like you check for gray hairs or pimples. I was the lucky recipient of a stem cell transplant in 2007 that saved my life. You can read all about that, should you care to visit that mess at There are a lot of F words there. 🙂

DKC often seems to rule (and ruin) my life, but the truth is that I still rule no matter what. Why? Because Mama Says So.  And because, although I would gladly give this affliction away before I type the next letter, I still rule because it has made me stronger in its attempts to defeat me.  I still rule because DKC showed me the love of family and friends. It taught me to accept help, admit fear, express uncertainty.  It showed me how little I can have and still be happy if I care about actual happiness. It caused me to adopt my daughters, the two individuals in all the universe who finally explain my existence and my purpose in being alive. It taught me that you can have a shit body and a shit day and a shit week ahead of you, but you’re only going down if you let it take you down. It taught me that the only way you lose your dignity is when you  surrender it yourself.

So, yeah. I rule.

Then there’s the Dada.  A man about whom I write few things, simply because he’s less into being profiled on the interweb than perhaps others who reside in the home.  Suffice to say that he’s sweet and cute and lovely and deceptively pacific when not on a rugby field.  He cooks like a dream, he tells the girls impromptu stories that are so good his name should be Silverstein, and he continues to love me even though I am nothing short of a goddamn ordeal in the home and out.

Our two daughters were adopted from China, and they also rule, but not (solely) because of that fact.  Rabbi Lawrence Kushner once wrote, “God sends us children to teach us what he has given up trying to teach us in every other way.”  Rabbi Kushner was right.  Every day I have to find some part of myself I didn’t know I had in order to do my job as their mother.  Every day I have to be a better person than the lesser angels of my nature would have me be in order to do my job as their mother.  Every day I learn from my girls, as they learn from me.  Sometimes it’s about sharing, sometimes it’s about family, and sometimes it’s about farts. No matter what, every day these girls force me to both reach beyond myself and check myself, and its a gig I wouldn’t trade for anything.  Not even a cooking roomba that says fuck.


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