Woensdag, 20 Maart 2013

Crossing the Rubicon: Living in the After

All smiles: the same week we discovered the need for surgery.
Transformational experiences sometimes appear out of nowhere, blindsiding us into new realities. Other times, they appear like distant comets- tiny specks in telescopes that hurtle in predictable trajectories until they appear enormous over our heads.

Our youngest's premature birth blindsided us, so we didn't take much note of the comet of her birth defects when it faintly blinked in the distant darkness.

Now, one craniofacial reconstruction later, we are watching the comet trail away. Breathing easier knowing that it didn't smash into us, but wondering if or when it might make a return trip.

It's hard to rejoin life (already in progress). Our trip to the children's hospital left every one of our children with new needs. The backlog of unfinished business only grew while we were away. We are different after intense fear and bittersweet months of trying to savor each moment with our kids.

When we started the process of this surgery back in October, I knew we were crossing a Rubicon; the decisions we made would be irreversible. But I thought we were Caesar commanding the troops into battle. Now I feel more like the troops running across the bridge with the heat of flames burning our necks.

Our daughter is doing well. Her expert surgical team dealt deftly with unforeseen changes in her condition and a potentially catastrophic emergency during surgery.

Despite the rarity of her medical situation, we feel lucky. Fortunate to be surrounded by wonderful communities, astounding medical options, and the generosity of friends and strangers. Most of all, we are thankful that our daughter, with all her humor and vigor, remains with us.

A special thank you to the anonymous people who donated the 2 units of negative rh blood (which we don't have to donate) that now circulate through her little body. According to her geneticist, the blood is now becoming her own after two weeks, but for over two weeks, your blood has been fueling her heart and body. Our appreciation is overwhelming, and I cannot sufficiently express our gratitude that you donated.

We are all here, but our world, though so good, has become somewhat unfamiliar. Please excuse us if we seem a little tongue-tied and keeping glancing at sky.

***Baby Toolkit is the story of two geek parents navigating an ever-expanding universe with their three wonderful and complicated kids. All opinions are our own.

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