Fearlessly, my daughter not quite two years old, steps out into the waves holding my hands. She doesn’t mind the water splashing her face. The waves that push her back, causing her to sway, seem only to propel her further into the moving clear blue mass. Her determination to take on the waves will undoubtedly give her needed strength as she walks through life. Her joy is infectious, touching those at play around us. She stoops to pick up a pebble shimmering in the light and tastes it for good measure.
It’s hard to believe that over two years have passed since receiving the phone call that would change my life. While preparing for Memorial Day weekend, the phone rang. “Mrs. Shupe, we want you to come in for more tests,” the nurse on the other end told me. Only a week before, at about the halfway point in my pregnancy, my husband, Todd and I saw the precious face of our daughter for the first time, at what was a very normal ultrasound appointment. We were so excited to welcome this baby girl into our family. Six years before, we’d looked into our son’s face, just as happy to welcome him into our small family. As ultrasounds go, this time was much the same.
The nurse on the phone explained that one of the tests I’d been given, the AFP, showed an abnormally high level of a certain protein. The doctor wanted us to come to the genetics office for more testing. These tests would show possible indicators that might lead to a diagnosis of Down Syndrome. “Don’t worry, though” she said. “The AFP has a high false positive rate.”
I was certain the test results were wrong. Further testing would no doubt reveal there was no reason for concern. After all, we had a healthy little boy and no history of Down Syndrome in our families. At age 34, I fell into a low risk category for carrying a child with Down’s. Not worried, we enjoyed our holiday weekend.
The following week at the genetics office, we met with a young counselor who explained that Down Syndrome was one of the most common chromosomal disorders, caused by an extra chromosome. This extra chromosome usually, but not always, resulted in mild to moderate mental retardation. The number of statistics she threw around was dizzying. “You know, we all take that risk when we choose to become pregnant,” she said brusquely before explaining the testing they wanted to do that day.
We went into the exam room for a more sophisticated ultrasound. The heaviness surrounding us descended upon me and I lay shivering from the chill in the room. The technician smiled and tried small talk, but any conversation at this point seemed flat. The only warmth I felt was from Todd’s hand, which I held tightly. After taking the necessary images, the technician left the room in silence to share her findings with the doctor, leaving us no indication of what those images revealed.
“The testing shows a number of indicators and I urge you to have further testing done,” the doctor told us abruptly while hurrying into the room. Her clinical expression revealed an emotional disconnect. If we agreed to further testing, she could tell us for sure. Todd and I felt strongly that regardless of what the testing revealed, this was our daughter that we loved deeply. We agreed to the testing to prepare ourselves for what might be and to be able to provide whatever care might be needed for our baby.
Back in high school, while riding home after tennis practice, a pick-up truck ran a red light. It came crashing into the front passenger side, where I was sitting. Time stood still as I watched and waited for the inevitable impact. I watched in horror, as if in slow motion the truck edged towards me. Silence was everywhere. At the moment of impact, the sickening sound of crunching metal and shattering glass was deafening. Reality came crashing in with that truck.
Waiting for the test results felt like watching that truck barreling towards me. I was powerless to do anything to stop it. After a week of waiting, reality came crashing in, bringing with it the ache of a fresh, deep wound. The test results confirmed our little girl had Down Syndrome.
Any pain I’d experienced in my life couldn’t begin to compare to what I felt that week. Fear of the unknown future was paralyzing. I grieved over the loss of the little girl I’d always thought I’d have. Grief is an overwhelmingly powerful emotion. I cried until my body had no more tears. Pain gripped my whole being, a searing pain determined to crush me. My heart ached as if being squeezed in a vice. When the tears were gone, I screamed. Why? As loud as I could, I screamed at God – afraid, not of Him, but of what lay ahead not just for us, but for our daughter. I screamed until all that was left was a hoarse whisper. Then I did the only thing I could.
Cries of desperation, begging for help, strength and joy restored went up in a flurry of prayer. Prayer eked out in a small voice, audible only to the One able to hear my cry. I clung to Scripture in prayer, believing that God comes near the brokenhearted and that those who sow in tears will reap in songs of joy. These truths became life to me, as God made them real in my own life.
“You know it’s going to be okay, Angie,” Todd assured me. “God’s gotten us through this far and He’ll continue to.” How two people could react so differently to pain is remarkable. The only evidence of our life-changing circumstances in Todd’s life being his finally finishing the Adirondack chairs which he’d started building five years before, when our son was a baby. He simply wasn’t shaken by this, at least not on the surface. He was quiet, but resolute and strong, for which I’m grateful. He threw himself into his wood-working project with the help of our son who assured me, ‘Don’t cry Mama, God is with the baby.”
It’s not that I didn’t agree with them. I knew God was with us and with this child. The love I felt for my baby was so strong, even if she wasn’t the one we’d expected. But my heart needed time to let go of its numbing ache. Tender and faithful, my heavenly father didn’t allow my heart to stay in this painful place for long. Joy crept back, in the small but beautiful things that exist when you stop long enough to look.
Sitting on my sunlit porch watching the trees sway in the breeze, joy was stirred. I didn’t want our lives to stop, especially for Jared. Two weeks after learning the news, we celebrated his sixth birthday with a camping party full of scavenger hunts in the woods by our house. Joy continued to emerge watching these young boys bound around fueled by sugar-filled smores. Laughter was real again. Life would go on.
Weeks later there were other tests to go through, more ultrasounds to check on growth and general health. A fetal echocardiogram revealed our baby’s heart to be healthy and strong. An ultrasound that showed a small amount of fluid on her brain was later proven wrong. There was no fluid, at all. Our only remaining concern, whether she’d have any digestive problems, was put to rest when she arrived. Her healthy appetite quickly revealed a fully functioning digestive system. Sofia Noelle, our beautiful and contented baby was born on October 11, 2005. When they placed her on my chest, she looked in my eyes and smiled, like she knew me. She knew I was her mama and I loved her deeply.
We’ve faced some challenges over these last few years. I know the future holds even more, but there are challenges in raising any child. Like the pebbles on this beach, smooth from tumbling against the sand, my heart’s been smoothed of its roughness. In its place is a bolstered confidence in God’s abundant faithfulness. The pain of that week is only a memory now, having been fully replaced by joy. As I watch my beautiful daughter playing in the waves for the first time, I know that perhaps these very circumstances make my joy even sweeter.