Cries of the Heart
by Cindy Lewis Dake
Just keep walking, eyes straight ahead, I told myself. Past the baby bottles, past 15 feet of shelves displaying diapers, past the baby bath toys, formula, and thousands of baby food jars. Avoid eye contact with the pregnant woman on aisle 4. Look away from the adorable toddler in the check-out line.
This was turning out to be one of those days when the diagnosis of infertility seemed to burn right through every inch of my being. It was hard to tell which was clenched tighter—my throat as it stifled the cries that begged to be released, my heart as it ached from the loss of something I never had, or my hands as they gripped the shopping cart.
Who would think a weekly trip to the grocery store could reduce a woman to tears?
THE VALLEY OF INFERTILITY
Millions of couples endure infertility worldwide—6.1 million in America alone. You would think as an infertile couple, we would feel we had plenty of company. But as we journeyed through the Valley of Infertility, we often felt as if we were the only ones who ever faced such challenges. Well-meaning but clueless family members and friends stoked the fires by asking unassuming questions like, “So when are you two going to give us a grandbaby?” or “Isn’t it your turn to be pushing around a stroller?”
Because our funds were limited, we determined we had enough money for one invitro procedure or one adoption. We chose adoption. Invitro couldn’t offer us a guaranteed outcome, while adoption would, at least eventually. So we put our hearts into the paperwork and training required by the agency we selected. Then we spread the word with family and friends by asking them to share our names with anyone who found themselves with an unplanned pregnancy. A year passed. Then Edward’s aunt in Georgia gave our bio to some friends who were providing a home for a pregnant 17-year-old. We were told not to get our hopes up. Nevertheless, this young woman was never far from my mind.
PAINTING AND PRAYING
Edward’s new job in Texas meant we relocated and bought a 46-year-old home. Diving into this remodeling venture was a mental escape for me. Yet as I painted, caulked, and dabbed color onto walls, I had more contemplative time in those weeks than I had had in the past decade. My mind wandered often to the plight of the 17-year-old who was carrying a baby. I prayed for her, for the baby, for both their futures, for their health, for their hearts to hear God’s loving call to salvation. Give this child a home where he or she will grow up to know of Your breath-taking, all-encompassing grace and mercy, I prayed, even if it isn’t in our home.
In spite of our heart-cry to be parents, Edward and I knew we had a good life together, just us. We often said we didn’t want to “embrace the emptiness” that seems to swallow up some infertile couples. Empty arms doesn’t mean empty hearts, we reminded ourselves. We didn’t want our lives to be completely centered on a quest for a child. We loved our life together, and if a child came along, he/she would be an added blessing. But we had to admit, it was a challenge to keep our hearts and heads above the waves of grief.
A few months later, we received the mind-numbing news that the 17-yearold in Georgia had decided to keep her baby, though she had chosen us as adoptive parents if she had followed through with adoption. It was almost too much to endure emotionally. The news of her decision came with additional details: Her baby, though due in late January, had been born three months early, after a 26-week gestation. The baby boy was only the size of a 23- week baby. At 1 pound, 6.2 ounces (624 grams), he was not just a preemie; he was considered a micro preemie. Due to his prematurity, the mother decided to keep Benjamin and raise him herself. This was the most painful day in our infertility journey. My heart wondered how much we could endure in this valley.
OUR NEW ADVENTURE
Just two weeks later, we were staring at the menu in our favorite restaurant when Edward’s pager buzzed. A message from his aunt and a call that followed changed our lives forever. Benjamin’s mother was reconsidering adoption as the baby’s discharge date from the hospital approached. The reality of caring for a special needs child and the high level of intervention he would need was becoming real to her. Would we consider being his parents?
Honestly, we were so hungry to be parents that the thought of what might lie ahead—medically speaking—was hard to comprehend. We only knew that this child needed parents who could provide for him physically, medically, emotionally, spiritually, and financially. We didn’t know much about caring for a premature baby, but we saw how God had prepared us in other ways for this specialized task. Edward’s job provided top-notch insurance coverage. As a one-income household, I could be free for doctor and therapy appointments. Becoming parents in our mid-30s meant we were more settled than many younger parents. And our life experiences had also given us deep roots and a strong faith—one that would be put to the test in the years to come.
We prayed if this was God’s will, we would keep walking in faith until this door closed on us. We were going to pursue adopting this child with everything we had. A few days later, we flew from Texas to Georgia to meet the birthparents. If they rejected us upon meeting us, then the door would be closed.
EMBRACING THE FUTURE
Thankfully, they didn’t turn us away. In fact, the birth mother said when she placed her baby in my arms, she felt relief and assurance that I was to be his mother. The moment she carefully laid her four-month-old, five-pound, 16-inch baby boy in my arms, time slowed to an imperceptible crawl. The universe continued to expand, the earth revolved, people went about their daily routines in a billion places around the globe, but my heart and my mind registered only the tiny sleeping face just inches from my own. In that moment, my heart was irrevocably entwined with his. I became his mother—forever.
This baby, whom we named Ryan Edward Benjamin Dake, came with strings attached—or rather, oxygen tubes and tanks, pulse-monitoring cords and equipment, and an apnea monitor and electrode wires. The daily regimen of feeding, medicines, and respiratory therapy was consuming. The list of doctors, specialists, and therapists which he needed to see in the first few months was overwhelming—nine specialists and at least three therapists. In the first 15 months, we logged more than 500 doctor and therapy appointments and two surgeries.
But we were as happy as any new parents could be! Perhaps happier because we had waited nine years to become parents, and we knew without a doubt that our child was handed to us directly by God. The birth mother wrote a letter for Ryan to read when he gets older. In it, she said:
I was scared that I wouldn’t always be able to supply you with all of the medical stuff that you needed. The couple your father and I chose for you were the only couple we had looked at the whole time. They are a very down-to-earth couple and I trust them. I feel they can provideyou with what your father and I cannot. You deserve the world. Your father and I love you a lot and we will never forget you, son. Always remember that. We didn’t place you for adoption because we don’t love you. We did it because we do.
Blissfully happy as a new mom, I began taking Ryan to a myriad of doctors while thinking our skies would be clear and bright forever. But when Ryan was six months old, the clouds began to form. The neurologist found calcium deposits in his brain which could result in severe retardation or epilepsy. Then at nine months old, an orthopedist diagnosed Ryan with a rare genetic condition—dyssegmental dysplasia. In the few documented cases worldwide, the condition resulted in the baby’s death in less than a year. With near hysterical grief, we questioned how this beautiful baby boy—long awaited, much prayed for, and full of smiles— could be snatched away by a genetic killer.
Three months later, another diagnosis came along. Ryan was profoundly deaf. We had cared for him for nine months by that time, and the truth was, he probably never heard our voices at all. All those times we had whispered “I love you,” sang songs, read books, cooed, or made happy fools of ourselves, he had never heard a syllable. Sure, he saw our faces, felt our touch and embrace, but he had missed so much of what other babies are soaking in at that age. And what did we know about dealing with deafness?
It was hard to reconcile the opposites of grieving these losses, while at the same time feeling such exuberant joy as our baby experienced those “firsts” which make infancy so memorable. We had no choice but to live with a lot of unknowns.
WEATHERING THE STORMS
Further tests showed Ryan doing well enough that he wouldn’t die from this syndrome, but he would bear the life-long challenges of abnormally stiff joints, some bone malformations, bones which naturally fuse, and weak bone density. But Ryan’s deafness has affected him far more than the orthopedic challenges. Deafness has changed our lives. We have the perspective to say it has changed us for the better by expanding our understanding of a world of people who find it hard to hear.
Ryan used hearing aids and other assistive listening devices from ages 1- 5. He developed some spoken words and phrases, as well as a large signed vocabulary. We used total communication (signing and voicing all communication), but we had to face this truth: Ryan had “maxed out” the decibels he could receive from his hearing aids.
Throughout his preschool years, we watched the advancement of cochlear implant technology. When he was 5, we decided to have Ryan receive one in his right ear, which was his “bad ear,” the one with slightly worse hearing, though both ears were officially classified as profoundly deaf. By implanting the bad ear, we were saving the other ear just in case the implant didn’t give him as much benefit as we hoped.
However, his first year with his cochlear implant was so amazing we forgot the left ear was ever the good ear! We decided to let Ryan become one of the first bilaterally implanted children. He now has as much use of both ears as current medical technology allows.
His speech and listening skills progressed so fast that he was able to be mainstreamed completely in kindergarten with a sign language interpreter only if needed. Now age 9 and in second grade, he doesn’t need an interpreter. He simply has a tiny FM system attached to his implants which transfers the teacher’s voice directly into his implant. One of his classmates told me, “Ryan is the only deaf kid I know who can talk!” Amazingly, we now find ourselves saying what so many other parents say, “Honey, please stop talking for just a minute!”
BLESSINGS IN THE DARK
One of my favorite blessings as the mother of a bilaterally implanted child is being able to talk to him in the dark, telling bedtime stories or praying together before he goes to sleep. No lip reading, no signing, he understands what I say just by listening with his cochlear implants.
The small accomplishments which slide by most parents are victories we celebrate. When Ryan understands most of a phone conversation, we rejoice! When he enjoys indoor rock climbing, we give God credit for allowing him to accomplish this in spite of his skeletal limitations. When Ryan makes “100” on an orally-given spelling test at school, we marvel at what God has done in the life of a little baby born too early.
AN ONGOING JOURNEY OF FAITH
Perhaps most incredible of all is looking back at the journey we’ve had with our son and realizing where we are now. Our struggle to get through the Valley of Infertility led us to a special needs child who needed us as much as we needed him.
While our lives have become more routine and the storms seem more distant, we know our journey will never be predictable. Ryan’s skeletal condition still presents us and his doctors with mysteries we can only observe and try to cope with. His odd-shaped vertebrae are naturally fusing together as the years pass. His bones and joints are so unusual that he will have a lifetime of orthopedic challenges, especially as he settles into early adulthood. Between that and his hearing impairment, he will have to work especially hard for everything he tries to accomplish, whether in school or in the job market.
But we wouldn’t trade our bumpy journey for one more steady or predictable. And we realize that if it weren’t for our infertility, we would never have adopted this special needs child. We likely would have said, “Surely God has a medically savvy couple who could do a better job than we can.” But God wanted us—in our inadequacies—to accept a challenge only He in His complete sufficiency could empower us to do.
God used the cries of our heart—the deep ache to be parents—to lead us to this amazing baby boy who has been life’s biggest challenge and life’s greatest delight, all rolled up into one.