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When Science Brings my Family Together

Science is the bridge between death and life, past and present, my angel baby and my rainbow baby. After the passing of our first daughter Sophia, I was not sure we would ever raise a child. After two more miscarriages, I was certain we would never raise a child. Once Evelyn was born, I recognized I should not try to outsmart nature. While we do not know why Evelyn has to battle with arthrogryposis–joint contractures that could be caused by a number of disorders–we know her physical presentation and subsequent gross motor struggles mimic those of her big sister. The persistent mystery clings to the edges of the most baffling question we ask: why did she persevere in-utero long enough to survive in the outside world while Sophia was born far too early? Even as we cannot rid ourselves of this inquiry, ultimately the answer is moot; we are grateful each day, each hour, each minute that Evelyn is here now.

Evelyn will never meet Sophia, yet somehow she senses Sophia’s spirit. She often army crawls her way into our bedroom, arm extending from the pale tan carpet in vain as she attempts to extend her index finger to the top of our dresser. Looming overhead, the dark wooden pedestal carries our other most treasured possession: Sophia’s ashes snuggled securely in a metallic heart. Evelyn is too young to understand she has a sister, despite our frequent discussions of Sophia. Evelyn is too innocent to understand death. Evelyn is too joyful to mourn the sister she has but will never have the privilege of meeting. Yet Evelyn knows there is something precious up there. What she senses beckons her like a mosquito to a flickering light. Contrary to our efforts to bring her back to her playroom, filled with brightly colored, loudly chiming, shiny playthings, Evelyn wants so desperately to be with whatever is atop our dresser.

Until this week, we only loosely linked our children by some of their shared characteristics: clubbed feet and contracted wrists, fingers, elbows, knees. When Evelyn was born prematurely, her minuscule head, not much larger than a softball, bared a face that brought me back to the night I held Sophia. Her slightly widened nose, small dimpled chin, and petite mouth retrieved my deeply buried memories of her sibling. As life carries on, and Evelyn grows and thrives, I still find moments during each day to daydream about my girls, together, as sisters and best friends. I envision Sophia as a six-year-old who’s sweet girlish looks foreshadow Evelyn’s.

This past week, we finally attended a much awaited appointment at Duke University Medical Center for a research study for undiagnosed genetic disorders. Since the prenatal appointment in which the first abnormality was found with Sophia, we have endured extensive testing in the hopes of finding answers. Continuing through my second and third pregnancies, all tests on our babies or me were inconclusive, negative, and remarkably frustrating. As we have immersed ourselves in the love of parenting our surviving child, I have let go of my demands to the Universe to provide answers to our profound misfortunes. Instead, my focus is on helping Evelyn become as successful, healthy–and most importantly happy–as she can be. Yet there persists a deep curiosity to understand our pregnancy woes both to comprehend our past and to better anticipate the future. img_1661

This research study is the first time we are able to include both our girls in our quest for resolve. In speaking with the researchers, we shared each anomaly, each common feature, each special trait both our girls have. Contributing birth pictures of both Evelyn and Sophia to our file, we stacked the cards in our deck with the hope of figuring out what has become a peculiar “normal” for our children. We spoke of our second and third losses, explaining my troubled pregnancies with each, and how it seemed at first to be unrelated to Sophia but now seems more relevant. For the first time, our family of six banned together, gave all we had, and became a tenacious team in this fight toward an all too allusive understanding.

As time goes on, we do not expect answers, but we can dream. We can explain to Evelyn one day how she and her siblings fought a good fight, a strong fight, a brave fight. Even if we walk away empty-handed, our hearts will be filled with love and gratitude for what we lost and what we have. And we have science to thank for giving us this gift of bringing us all together again.

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