Ethan: Part 1

The moment my worst nightmare became a reality is seared into my memory. I can replay it like a video clip, over and over. The dim lighting, the hushed voices, the quiet, steady presence of my husband at my side. The nurse handing me a box of tissues, although my eyes were dry. The tears would come later. For the moment, I was numb. “We’re seeing a problem with this baby.” My unborn son’s tiny little body wriggled and twisted on the grainy black and white ultrasound screen as the doctor began explaining how we would never be bringing this little bundle of joy home from the hospital.

The “problem” was a neural tube defect called an encephalocele. Unlike cancer, and other diseases of life outside the womb, the fact that the doctor had seen it on the ultrasound so early in the pregnancy was not a good thing. In the first few weeks of my pregnancy, Ethan’s skull had failed to fuse correctly. This meant that part of his brain was growing through the hole, and it would only continue to worsen. We soon started hearing words like “incompatible with life,” and were told to “consider our options.” We were given a dismal book about our “decision” and sent home to contemplate the value of a life.

The medical community gave us facts and statistics. They gave us phone numbers and sympathy. They offered us what they viewed as the chance to end the nightmare and move on with our lives. Yet they failed to meet our most basic need. They didn’t give us hope. Hope of a precious little boy nestled in my arms. Hope of a lifetime of memories wrapped in just a few days. Hope of lives changed forever because he was here. Hope of a God who has a plan much greater than we can imagine. Hope of a joyous reunion and an eternity together.

During the months that followed, we continued to receive advice and care from the doctors and nurses. We listened to their opinions, asked questions, and faced the truth with a growing sense of acceptance and an abundance of grief. But we also prayed, enlisting entire church congregations at a time to join us and plead with a God who is all-powerful, all knowing, and forever present. We prayed for peace, and comfort, and faith. We prayed for ourselves and for Ethan. We asked God to give us time with him, and to make him whole. We asked that our child not suffer, and that our own suffering would not be in vain. Although our story did not end in a miraculous healing, or a shocking reversal of diagnosis, as I look back on our experience, I know that in His time, and in His ways, the Lord answered every one of our prayers.

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