Crazy grateful


Each Thanksgiving, I take inventory of the things I am grateful for.   While I am never more or less appreciative, one year to the next, there are times where events like births or deaths act as glowing reminders of all that we are blessed with (and, more soberingly, how quickly those things may be lost). This is one of those epically humbling years.

My daily life is rich with moments to savor.  Every morning, I am reminded by my beaming, footie pajama-clad alarm clock how very lucky I am to be the mommy of a darling little boy.  Every opportunity I have to witness the interaction between our two kiddos, I see the joy they bring to their father and each other, and my heart swells.  While my job involves scenarios that do not often lend themselves to positive outcomes, there are measurable improvements here and there, and those little victories are very, very sweet.

Our life was turned upside down at the end of this October, when Lili was found to have a massive liver tumor.  Two weeks of witnessing terrifying procedures and pain for her, compounded by diagnostic uncertainty and related prognoses made it very hard to stay positive.  Every day we spent with her, particularly when she had a room on the bone marrow transplant floor, I told myself “it could be worse,” but the truth is that seeing her suffering and scared often prevented me from staying in touch with gratitude.

In early November, we received the amazing news that the pathology lab had declared Lili’s tumor benign, and several days later she was discharged.  We were buoyed by the good news, however while her incision scar is healing spectacularly, she took a big emotional hit, and her psyche has been slower to recover than her belly.  The hospital psychiatrist told us to expect regression in both of our kids (one from the trauma of a hospitalization and major surgery, one from the sudden and near-complete absence of his parents).  This has manifested itself in truly heartbreaking ways. Timo, our toddler, now collapses in agonized wails when he loses sight of me, making it soul-crushing to try to drag myself to work, let alone put in extra hours to make up for the time missed during Lil’s hospitalization.

Lili is more fragile than I have ever seen her, suddenly and very uncharacteristically dissolving into tears over a forgotten stuffed animal, or a dropped call with her mom. While I think returning to school has helped to accelerate her emotional recovery, she was so exhausted the first two weeks that she would need to sleep for hours after finishing even a half day of classes.  She still has plenty of spunk, but is as quick to erupt into sobs as giggles, which has been hard to watch and left me feeling still quite helpless.

I’d be lying if I said that the darkness didn’t creep in sometimes late at night, especially while Lili was in the hospital.  However, the sun kept peeking out from behind the clouds.  All throughout and for some time after her hospital stay, groceries, meals, and gifts were dropped off, at both the medical center in Valhalla and our home in Easton.  Offers of babysitting (or mommy sitting-with), cards, prayers, and messages of support poured in, from family, coworkers, Easton Connects with Kindness and mom’s groups, church congregations, old and new friends.  And just when I thought our refrigerator and our hearts couldn’t get any fuller, Easton had a 2nd Halloween for Lilia, because she’d been stuck in a hospital bed on October 31.

Nearly 20 houses in our tiny town participated, with an entire street designated for Lili’s trick-or-treating pleasure.  She was greeted by adults and children (and even dogs!!) in costume, hugged, fussed over, marveled at, and lavished with full size candy bars.  After just a handful of our many stops, her treat bag and my eyes were already overflowing.  What may be the most impressive thing about the whole event is that we don’t have a child in the local school system.  T is not quite old enough for preschool, and Lili goes to school in a different district.  So, Liliaween 2016 was created and carried out entirely by people who had never even met her – and in many cases, any of us.

So this year, I am grateful for Maria Fareri Children’s Hospital, borne of the tragic loss of a child, whose skilled and compassionate staff helps other families fight to keep theirs.  For two healthy kids, loving families and fantastic friends, both near and far. For the wonderful community we are blessed to be a part of.  Most of all, though, this year I am grateful for the kindness of near- and even virtual strangers.



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