Mercy Anne. Anne means “grace”. Mercy and Grace. Her name was born in my heart before she was born into this world. I had no idea, at the time, the deep significance of her name…what it would mean to us…to her. I had no idea the hope and faith her name would continually inspire…nor the prayers it would invoke.
I remember vividly the day she was born…how beautiful she was. Ten fingers. Ten Toes. Healthy. Perfect. We didn’t know.
Looking back, it’s so clear. But, we had no clue. No clue why my singing to her brought no comfort…why our cooing and sweet words made no impact. No clue why she would cry in her crib even after we came in and started talking to her…cry until she saw us…then she would stop. No clue why she hated playing in the play pen…especially if I left the room for a second. She would be so upset. No clue….but we did not remain clueless. After a few months, all these little things piled up, beginning to create a sense that something was not quite right. It came to a head when she was seated on the kitchen floor at about 8 months old…playing with her toy. I accidentally dropped some pots on top of some pans and you know how loud that can be.
She didn’t flinch. Didn’t turn her head.
And fear entered my heart.
That day, as she was napping, I crept into her room. I looked at her sweet, sleeping baby self….and my heart pounded. But, I had to know. I had to. I took a deep breath, bent close to her ear…and yelled. She slept. I cried.
And so began our journey, battling the socialized medical system in Holland in order to get her help. Finally, when she was over a year old, they agreed she needed testing and told me what I already knew. Profoundly deaf. I remember sitting in the hospital as the doctor explained the results. I felt numb. Yes, I knew. But, now it was confirmed. Cold, hard reality. And I played back the first year of her life…and everything made sense. Everything. And my heart broke..all this time she’d never heard our voices, never heard us say, “I love you”. She’d never heard the music, the laughter…and I know she had to have been very often confused. Then I heard the doctor say, “Cochlear Implant…” An option. Was it the right thing to do? We prayed. We cried some more. And after a time, felt this was the path for us. However, right before her surgery, they discovered via an MRI that her cochlea were malformed. Mondini Deformity. The surgeon sat us down the day before her surgery to tell us the cochlear implant might not work. Due to the malformation of her cochlea, he was afraid only one electrode could be inserted. A bare minimum of six is needed for speech. Most kids/adults have between 16-27 electrodes. He asked us if we wanted to proceed. There were risks involved…possible meningitis as a side effect of the surgery..possibility it wouldn’t even really benefit her after all. Once again, we cried…and prayed. Peace came. We knew we needed to take this chance and trust God with the outcome.
Through a miracle…a small bone in Mercy Anne’s ear that shouldn’t be there…the surgeon was able to insert seven electrodes! Six are turned on. The bare minimum. He was hopeful she’d learn to speak…but made no promises. He said, “Seeing her personality and desire to communicate, I think she will.”
Fast forward nine years…
I am standing in the theater getting ready to photograph the dance rehearsal for Burlington Dance Center. As the music begins, I soon see Mercy Anne come onto the stage. Dancing. She’s dancing…hearing the music…somehow. And I savor this moment, even as my camera clicks. Savor the miracle of her life. Savor the fact she is able to dance…to perform. Savor the fact that she talks so much our eyes often glaze over. Savor the fact she is constantly growing, improving, learning. With all the challenges, I am so grateful. So grateful for God’s mercy and grace in her life…for the mercy and grace he will yet bestow upon her. So grateful for all those who have walked with us..who have invested their time and energy to teach her and help her. And who have taught us as well how to communicate and work with her.
The journey is not over. In fact, some of the hardest parts are here and still coming. The struggle she has with being “different” and not understanding why she is deaf when no one else in our family is. The struggle of feeling she doesn’t fit in….or being made fun of because she doesn’t talk as well or doesn’t understand everything that is said to her. If only those people could walk a day in her shoes. They have no idea.
I’m so proud of her. So proud of how far she’s come. So thankful for her loving, generous heart and her spirit of determination…her natural gift of leadership and her complete and total love of people.
She will turn ten on Thursday. TEN!! So, in celebration of her life…of leaving the single digits forever (sniff); this blog is, obviously, in honor of her.
I will close with the verse we placed on her birth announcement…
“The LORD your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.” ~ Zephaniah 3:17