“It’s going to be your gift,” repeated in my head as images and memories dance across my mind. Our struggles are a greatest source of gift, I reminded myself with a smile and a sense of peace.
In those images, time stood still, yet, it never slowed down.
We have grown and changed over the years in this waiting room.
The first time I entered this place, my oldest was seven and my youngest girl was just about 6 months old as she lay snug in an infant seat resting next to me. My other two littles, son and daughter, were equipped with cars and dolls to occupy their busy minds.
I flashback to the day, when I was trying to reassure my nervous 7-year-old, all would be okay as she lies on the floor being given a test with wires and stickers in her curly blonde locks.
How could I reassure her when I didn’t even understand what was happening, let alone wrap my brain around the fact she was ON THE FLOOR for this test! She needed to lie still.
Was this the only room available to administer this specific test?
It seemed there was some schedule issue, and we didn’t have a soundproof room for the test. The caring audiologist who we grew to love as she held our hands and our hearts through this journey wanted to complete the test to get some answers.
It still didn’t make any sense to me.
Tears slowly streaming down my daughter’s face as she was told to lie still. Any movement would affect the results of the test.
I know concern, confusion, and heartache was written all over my face, on my husband’s and, of course, my precious blue-eyed girl’s as she tried to lie still on the floor to do this ABR.
So many months and years of unknowing and, of course, eventually moving off the floor to real testing rooms. So much time had passed with each next appointment; more loss, more tests, more jargon.
MRI’s, ABR’s, SNHL
Blood-work, Bone Conduction, Hair Cell Stimuli
Neurosurgeons, ENTs, Audiologists, Genetic Specialists, Connexin 26 Negative.
With each additional appointment in our frequently visits, came more familiarity, more courage, more understanding, and more strength.
More gifts began to weave into our hearts.
There was a point in time when some of it got harder because the loss was more significant, but then it started to become more comfortable, maybe a bit more familiar and definitely more manageable. But it was always changing, because the loss continued.
This place began to feel more like a second home.
As we drove home from our visit where my daughter was fitted with her first piece of equipment, I felt the nudge to say as I swallowed back the tears, “My sweet girl, this will be your gift. Your hearing loss is going to be your gift!”
I am not sure if I was convincing myself or if the Holy Spirit breathed those words on my heart, but I felt convicted, this was the truth. Either way, the weight of all of this was lifted as I said these words out loud.
This hearing loss would be her gift. Somehow we always find the greatest gifts in our biggest struggles.
While I said those words to my daughter, little did I know how much truth breathed in those words. It became her gift to so many in ways we could never predict.
Of course, I don’t really mean the hearing loss is a gift — it’s what came from the hearing loss and the journey that is the gift!
She has been an overcomer, and an example of resilience, bravery, joy, and strength despite facing adversity. That is the gift.
We received a few other gifts along the way. Some that came to me specifically and some that were for her.
There were relationships we developed with specialists, hospital staff, parents who walked similar journey and who we otherwise would not have met. New and beautiful relationships, they were a gift.
For years Team Lebano helped direct my girl’s (and mine, if I am honest) grief and struggle toward efforts to fundraise and bring awareness for hearing loss. She learned to make it about something other than her loss. She made it about something other than herself. She used her voice and experience to bring awareness and change.
Bringing increasing awareness and advocacy for hearing loss was another tremendous gift. Inviting audiologists and specialists to to our daughter’s school to guide students and teachers about hearing loss and how to interact with those who have hearing challenges. This was an invaluable gift to those teachers and other students who surrounded my daughter daily.
Despite these gifts, it was often a heartbreaking and painful journey, especially when support was not given by those who we trusted to provide a fair and equitable education. This was especially true for a student who just wanted to learn.
She was often shamed and treated without compassion or dignity, yet she continued to try harder to prove she deserved respect. She was often told she could not do things like play music because of her hearing loss—or that she heard with a delay because of her hearing aids.
She did not let it stop her; in fact, she tried harder, danced more, and took lessons for years on the flute and at the piano. She was not going to allow the voices of the naysayers stop her.
We began to see that over time, she would prove she could “hear better” than many with perfect hearing.
She showed that listening with your heart offers far better results when learning how to treat and love people well.
None of that matters now. My visit on this day was for something else.
The sound of babies and toddlers chattering, crying, and constantly moving brought me back to the moment.
I scanned the room to see parents sitting there with a blank stare on their face as they attempt to be brave and unaffected because they know children can read their every move.
Parents appeared overwhelmed and impatient as they keep checking their watches in the crowded waiting room.
It was all so familiar.
Yet, I was different. I had years on this place.
I turn my gaze back to the waiting room.
I scrolled through the time capsule in my head at how many hours I sat here with my four kids in tow —kids who were practically raised in this place.
On this day in the summer of 2018, I sat in the waiting room for a follow-up appointment. This is the follow-up to Sophia’s second cochlear implant surgery. This successful surgery was two days before my dad had a heart attack. This appointment marked 2-1/2 months since the surgery and 2 weeks since my dad passed away. Needless to say, emotions were raw and heavy with grief.
This visit was after weeks of appointments for therapy and mappings. Despite the grief of losing my dad only weeks before and the reality that my girl’s natural hearing was completely gone, we wrestled with grief and wanting to celebrate the new sound. We wanted to mark the gifts, not acknowledge the heavy grief.
She found her miracle
After 10 years of loss, she found a miracle (with two surgeries and some work) to gain back sound in both ears with these new cochlear implants.
We believed there would always be hope. I told her many times, “You will never not hear.” I trusted God on this one and prayed this would be our truth. We knew hope was coming in the form of an implant promising to bring sound to a girl who kept losing it.
I was a different mom on this day.
I was a mom who was aware of the gifts we have been given, even in the loss and suffering.
I was the mom who found freedom from the struggle of the unknown.
I was the mom who wanted to help another. I was no longer the one consumed with the ache in my heart for the hours spent in this sacred place.
As I waited our turn, I could not help but notice a woman and a man with their young toddler coming out of their own appointment.
There were clues to tell me why she might have been there. I can’t say I know for sure, but I could only guess from the hours I spent in this sacred place. I knew the signs; I heard their chatter.
I could not help but notice the familiar look on their faces. The dad seemed numb. The mom was fidgeting as she tried to find some paperwork in her handbag.
She was fighting back the tears, the nervousness, the stress on her face, and wondering what was next.
I knew the feelings that her face carried and tried to hide. I knew them because I was once that mom.
I can’t say for sure, but I could guess this mom just received unwelcome, unexpected news, and it just might have rocked her world.
The look on he husband’s face said the same. Yet, he tried to remain positive and strong.
“What now?” and other questions scrolling through her mind.
I wanted to stand up, walk to her, and wrap my arms around her.
I wanted to tell her while it all be hard and a difficult journey, a ray of light will eventually show up to point to the gifts in this loss.
Here’s are some words I wrote to that mother while I sat there waiting for our appointment.
Perhaps it will speak to you not just about hearing loss but any loss or unexpected news, a diagnosis, or some sort of grief you carry.
Dear Young Mom in the waiting room,
I sat where you are. I know your heartache, your worry, your grief. I know what it feels like to be handed unexpected news.
I see that look on your face —pain mixed with fear of the unknown, shock, disbelief, guilt for feeling any of this. And the question, “Where do we go from here?”
My daughter sat where your child is right now. Yes, the unknown is scary, but look at my daughter now. She has grown so much.
I want you to know there will be gifts.
While her peers were deciding what they were doing for their 8th birthday, we were picking out bright and sparkly colors for new ear molds for new hearing aids. I wondered if they would draw too much attention.
My daughter was overjoyed, so I cheered with her for wanting to own and celebrate with glitter and gold to proclaim to the world, “I am affected by hearing loss.” I prayed no one would make fun of her.
Instead she grew proud and confident in her multi-colored ear molds— Just another gift.
While my daughter watched her friends play and chat in the pool, she stood by deciding when to jump in. Someetimes she chose silence over loneliness, because hearing aids could never get wet! I prayed she’d find understanding friends who knew social gatherings were hard in large open spaces and any kind of damp places.
She learned to adapt in a pool of silence as she read lips even though she could never really be part of the conversations nor the laughter.
She learned to listen with her eyes and heart.
While she was sometimes lonely, she grew closer to her siblings, who took the time to care and understand. This fostered a gift of love, friendship, and respect between her and her siblings. It is a beautiful bond built on compassion, faith, and trust that will never be broken.
When I was asked to speak at a conference about our experience, I gently encouraged my 14-year-old daughter to talk in my place, for this was her story.
What a gift it was to show mothers like you and me there is hope, joy, and happiness even when the days are harder than they should ever have to be. She inspired parents, audiologists, doctors, and teachers because she was thriving, growing, dancing, and learning as she continued to lose her natural hearing.
At 16, rather than throw a party or take the driver test, she made the brave decision to gift herself a life-changing surgery to take a chance on being able to access sound once again. She longed to be doing the other things, but the operation was absolutely necessary.
She took the driver test two months later than planned. We had the gift of time to practice driving while she homeschooled for a semester after her first surgery. During this time, she trained her hearing and her driving skills.
We grieved, we healed and we both learned. And that sweet 16 birthday that we missed, became an even sweeter 17th birthday celebration surrounded by adoring friends.
Sweet Momma in the waiting room, when you think you can’t see past this moment of grief as you wrap your head around this new normal, let me assure you you will make it.
Because I know the guilt, the pain, the suffering, the hearing loss will reveal gifts over time. In time, those gifts will be revealed.
I see the gifts more clearly now than ever.
They didn’t show up in neatly wrapped packages, and they required tons of grace, courage, strength, perseverance, creativity, and peace to see them.
While some days, my energy was zapped, I did not give up. I knew deep in my heart that those words, “My sweet girl, this hearing loss will be your gift someday,” was going to be our truth.
It is clear that “someday” is today.
I stand back today and watch my brave 19-year-old girl share her story to inspire others who struggle too. Others who are living with hearing loss, loneliness, grief, fear or other struggle that makes them feel different.
Sharing her story on her “Hear and Now Podcast” and blog, we see beautiful and unexpected things happening each day. Once again proving to be treasures she would not have without her hearing loss.
Using her honest, vulnerable, and confident voice, she has bravely encourages other young mothers like you to discern the next step for their child’s journey. And she advocates for hearing loss as she brings awareness to this silent (no pun intended) disability—that is the ultimate gift.
I promise you, Dear Momma, in the waiting room, your life may be quite different than you ever expected, but it will surely be more magnificent than you could ever imagine.
You will beam with pride as your little one grows into a young lady who will eventually use her hearing loss to offer a gift of light and truth, courage, and strength someday too.
May you know you are never alone and may you begin to find those gifts.
Hearing Loss Resources and Information
Here is a link to my Girl, Sophia’s podcast who learned how to make her hearing loss her strength and a gift to others. While it has not been easy journey, she is bringing awareness and light to the this disability
The truth about Hearing Loss The Myths and the Truths and Other Great Resources
Informed and truthful Blog for living with Hearing Loss or those affected with Hearing Loss. Link to her Most Popular Blog Topics Tips on Communication, Things you wish people would know about hearing loss. Why Hearing Aids are not like Glasses