We often refer to our lives with children as a journey. As I reflect on our journey with two daughters with hearing loss, I envision two trees grown together with deep roots, lots of branches, a few homes for wildlife, many blooms and fruit.
My husband and I started out as two seeds planted closely beside each other. As we emerged from the soil as individual, very different saplings, eventually our trunks were connected and we started a family. Our first strong branch, Eli, born in 2001, grew for four years as an only child and brought forth much delicious fruit and gorgeous blooms for all to enjoy.
Next, Emily joined us in 2005. We were told by the Gardener that this branch would develop differently. She would need extra attention and care. I had a “normal” second pregnancy with her despite enough heartburn that I sat with my arm over my head to try to get any relief in the last trimester. Hers was a much different labor and delivery: there was no pampering in the hospital suite this time. Instead, I was immediately injected in both legs with something and transferred to a tiny room for a C-section. My friends and family had urged us to “leave the baby in the nursery because that’s the only rest you’re going to get” so we tried it. The first night, my husband and I were startled awake in the pitch black dark to a nurse storming into the room, turning on the lights and sternly saying, “We cannot do a thing with her. Here, take her.” I gently cuddled my baby girl, trying to comprehend what was going on, and the nurse said as she was leaving, “don’t let the baby fall off the bed, we had a skull fracture yesterday!”
Emily referred on her newborn hearing screen the next day and would be confirmed with a moderate-severe hearing loss one week later and again at one month of age. This little bud of a branch, comforted and held close for so long inside me, found herself outside my body, alone in a bassinet, couldn’t hear much of anything around her and she was MAD! She was determined from the start to make herself seen and heard. Friends still encourage me by noting that her strong determination will serve her well later in life, but it sure drove me up the wall in her early years. Since then, as I have been growing my own strong branches of advocacy as parent, I see that Emily’s God-given strong will has helped us both tremendously.
When we were discharged from the hospital, as my husband was pulling the truck around front and staff pushed my wheelchair out of the room, the discharge nurse arrived. “By the way, Emily did not pass the hearing screen and we made an appointment with an audiologist.” Now, at the time, despite many recent babies in our extended family, I did not know that parents should expect results from a hearing screening at birth. Obviously, my son and his cousins had passed their screens, but do not remember results verbally or in writing.
My ignorance helped me not to panic. The nurse also mentioned fluid in the ears as a result of the surgical delivery as a possible cause. I also remember my mother telling me “that we are going to do everything they tell us to do until proven otherwise.” I am so thankful for this still today because that principle helped me progress through the grief cycle, or at least past denial and into action. Emily was fitted with hearing aids at two months old. I had hoped up until that day that the need for aids would be “proven otherwise,” but it was not to be. When the aids were placed in her tiny ears and turned on, Emily startled and came alive with wonder, listening to sounds for the first time. That was the day it was confirmed for ME that yes, in fact, Emily does have a hearing loss. I made it out of the audiology office and to the elevator, and broke down emotionally for a few moments. Looking back, I strongly recommend that parents have family or close friends with them for support when receiving results, but I know that Emily and I weren’t alone at that appointment, before or since then, because, to me, the Lord is with us.
Shortly after that, during a church service, our pastor called me up to the altar and I felt the Lord reassure me that “one day I would know why Emily has a hearing loss.” I felt settled for awhile. Eventually I was led to ponder the story of the blind man in Luke. Others were asking Jesus, “Why was the man born blind? Was it the man’s sin or his parents’ sin?” Jesus said, “It is neither of their sin, it is so through the man’s weakness (blindness, or could it be hearing loss, or something else) that I will be glorified!” That settled it further for me that Emily and our lives would be glorified through the Lord, who has done exceedingly, abundantly more than we can ask, His power is working through Emily and His is glorified through her success, testimony and life.
In 2008, another bud of a branch emerged, our Audrey. I never expected her to have a hearing loss: we have no history in our family except in a few of our elders. We had no known medical condition that caused Emily’s hearing loss. Plus, doctors told me “it’s like lightning striking twice in the same place.” Our tree was struck by lightning, twice (and I know now that we are not alone.) We just didn’t think it would happen to us.
Audrey’s audiogram looks very similar to Emily’s but with 10-15 db less hearing. We roomed in this time after the C-section, and I wanted her back as soon as possible after any procedures, including the hearing screen. It was a shock, but to us, not as convulsing as learning about Emily, because I knew Audrey would do well, too.
We couldn’t ask for a more outstanding big brother to the girls than Eli. When my husband or I weren’t talking to Emily, Eli was! I am a natural talker anyway so it was easy to give the girls and Eli rich language, a gift from my own mother to my twin sister and me. Audrey had all of us, both her parents and creative and imaginative older siblings with whom to share language.
I know the Lord continues to promise us as in Isaiah, “He will grant those who mourn in Zion, Giving them a garland instead of ashes, the oil of gladness instead of mourning, the mantle of praise instead of a spirit of fainting. So they will be called oaks of righteousness…” and thus our tree is full of life, language and lots of noise and fun.
Editor’s note: Our Family’s Journey is a regular feature sharing a parent’s individual perspective while recognizing that other families come from different backgrounds and walks of faith. We welcome your stories. For editorial guidelines, contact editor@handsandvoices.org
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