100 Moments

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Ephemera (objects of an historical record that are neither documents nor maps) clutter the window sill over my kitchen sink. A ceramic lamb reminds me of my mother; a lady bug plant holder brings my friend, Gabby, to mind. Most of the time I don't notice these treasures right in front of me. My mind is somewhere else - past or future - when I face the window sill.

The recent challenge of my great-nephew and his wife has made me more aware of those small things in life and how critical it is that we live in the present rather than the future or the past.

Up until the 16th week, their pregnancy progressed just fine. A first baby for Josh (my sister's oldest grandson) and his young wife Rebecca. Josh is career air force and the two were high school sweethearts just as Josh's parents were. So excited about their baby.

But at sixteen weeks, bloodwork discovered something. They got a second opinion quickly confirming the news: their baby has a neural tube defect( NTD). Neural tube defects are birth defects of the brain, spine, or spinal cord. The pregnancy develops like any typical pregnancy but because of a particular anomaly, babies with anencephaly especially are either stillborn or die shortly after birth.

This young couple chose to continue their relationship with their baby begun when they first learned of her existence. The history of their baby would be made up of ephemera of the moment. Yes, they would think about life after the delivery but only as they needed to, with the neonatal hospice nurse, exploring how to say good-bye to Savannah Joy as they continued saying hello.

Josh & Rebecca, Photographer: Sarah Robinson
Rebecca started a blog: Sweet Savannah Joy that tells their story. I am in awe of their plan to have their baby experience at least 100 special things before she's born. (Shamu and Sea World wowed Savannah last weekend; in this 27th week she helped build a fort in the living room her parents love so much they can't bring themselves to take it down). When the baby kicks in the morning and Rebecca feels such joy she writes: "In that moment I just wish time would stop."

Any of us can add to that 100 Moments list. They've asked us to. For now their baby book is a white board where they record significant milestones in Savannah's weekly life then transfer it to the keepsake book they will share with future siblings. Josh's sister Sarah takes pictures and crocheted a hat for her and another matching hat for Savannah's dad. Both mother's and father's day were celebrated with awareness that Savannah's not too happy with chocolate late at night.

"It's like living in two worlds," Rebecca told me. "One life is a regular pregnancy, enjoying my baby's personality, how active she is. We love the ultrasound pictures where we see her face and her long legs - like mine." She pauses. "Then there is this other life where we meet with the hospice nurse and discuss what choices we can make, how to comfort her when she arrives. We talk of living with the uncertainty of not knowing how long we'll have to hold her in our arms."

What Rebecca describes is the great courage it takes to live in the present moment. None of us really knows when we will end our time on this earth and yet we go blithely along behaving as though we have a lifetime with those we love. Josh and Rebecca decided at the 16th week of Savannah's life that they would be as present as possible, not move into fear and anxiety of the unknown nor be held hostage by past regrets. They would do now all they could to love this child and have her experience the now of that love. They pray for a miracle (as do we all) and accept the answer for now by the moment to moment awareness of this present joy.

When my sister was dying (Savannah's great-grandmother) her son and I spoke quietly as our hands held my sister's. "It's a lot like birthing," I said. "I was just thinking that," he answered. "The waiting, the breathing changes."And if one's heart is right the anticipated joy of the next moment of more life.

"Where but in the present can the eternal be met?" wrote C.S Lewis. My sister's grandson and his wife are living a life of love, cherishing the present moments of their daughter's life and their precious relationships composed of neither documents nor maps but the ephemera of treasured moments. It's a reminder for me to be present with those I have relationships with for who is to say how soon I will have to say good-bye when it seems like just yesterday I said hello.