An Anniversary, Hearing Loss, and Bethlehem

I am sharing this journal entry as a gift to my oldest girl on the 3rd anniversary of her first cochlear implant surgery. I wrote this journal entry and intended to share it with a few very close friends on the eve of her surgery. The surgery was exactly three years ago on December 16, 2016. I invite you to follow along.

Dear Friend – 

It’s late.

I know I should be asleep.

I can’t help but look at the clock because I can’t sleep. 

It’s 11:45 PM. 

Sophia just said goodnight to me, to December 15, and probably in some ways to life as she knows it.

While decking the halls with Christmas cheer yesterday, I could not help but wonder how on Earth we managed to schedule this big day during the busiest season of the year. 

We scheduled this date the day before Thanksgiving-only three weeks ago. Doing so felt a bit chaotic and sad, with all that occurs throughout the month. Still, the timing felt right. And we wanted to have our doctor do the surgery before he left for another job location.

December, after all, is one of the busiest months for our family.  

December is the month that gave life to our family story — the story of Jon and Heather with a wedding anniversary. 

December is also the month we celebrate the birthday of our precious first baby, who arrived two weeks early, unexpectedly.

Today in December, we celebrated the birthday of our third child — who also unexpectedly in her determined way arrived 9 days early.  

Decembers have brought so many happy moments that represent many new beginnings. And it seems Decembers also bring the unexpected, such as early deliveries of babies.  

December 2016, brought something very unexpected, in the form of life-changing surgery.

The uneasy feeling would not go away these last few weeks at the magnitude of this day and what it would bring for Sophia. December is “supposed to be” happy and not full of worry over something like this. She’s already had to worry about so much with her declining hearing. And she wants to be a regular kid turning 16, having a party and getting her permit.

The ache in my heart is familiar these last few weeks. It is similar to what I felt when Sophia was first diagnosed with hearing loss in 2008. 

Our first visit to the audiologist was back in 2008 near the end of November. I sat in the vacant and quiet waiting room with my 6-month-old baby, who slept in the car seat on the floor below me.  

I vividly remember staring out the window, watching the rush hour traffic whizzing by to their next destination. My heart was racing like the traffic outside, and I was shivering because it was so cold sitting by that window in my little dark corner.  

Or maybe I was shivering less about the cold and more because somehow I knew the unexpected was about to be shared. We had several other appointments that led up to this one. (And we certainly had many —so many long after.)

The audiologist came to be a beloved person on our journey. In her kind and gentle way, she ushered my 8-year-old Sophia off with another staff member to distract her while she shared the results of the testing with me.

Here I was alone waiting for the delivery of this news unaware of the journey we were about to begin. 

The audiologist shared with me the news of the hearing loss as my littlest one smiled at me from her car seat. I just wanted it not to be true because I knew there would be struggles. Over the years, I watched my mother struggle with her declining hearing.  

The biggest struggle that we could never have predicted would be that her hearing would continue to decline and be labeled progressive hearing loss.

Here we are 8 years after the fitting for her first device.(this journal reflection is from 2016. It has really been 11 to date) There’s that familiar ache in my heart and stomach. I often feel this when I know she has had to endure so much already. I’ve had to fight so often for simple things for her. 

Even though my girl was living life with progressive hearing loss, she is stronger, braver, and more courageous than others her age and beyond.  

She continues to start each new day with grace, resilience, and pure joy. And even with the slight ache comes excitement for the possibility of what will happen with this surgery. As we awaited the approval from insurance for the surgery, I couldn’t stop thinking about the December timing and questioning if it was right to schedule it now. 

Just this past Wednesday, an hour or so before the insurance was approved (what a painful and roller coaster process), I carved out time to sit in silence in church. I really needed time to get clarity on all that was happening around us. I was in awe of the beauty that was revealed when I shut out the noise of the world. 

Here we are: it’s December, our absolute favorite time of year, it’s Christmas, the season of joy for us. It’s Advent, the season of the waiting for the most precious new beginning of all. I was overwhelmed with the beautiful message that was left on my heart. Our month, December has been the month of many beautiful new beginnings. 

After Sophia was first diagnosed with her hearing loss, we couldn’t help but rest in knowing this was somehow going to be her gift. 

So, that December became a new beginning as well. And though hard at times, it has become the gift that allows her to share with the world courage and grace to inspire others to be the best they can be even while facing their own challenges. 

While I had little proof but a ton of faith, I knew she would never not hear. I remember telling her so many times over the years. 

Maybe I told her to convince myself or perhaps I told her confidently we’d be given some sort of miracle. 

I remember telling her when she was 11 or 12 after an appointment where her hearing was really declining in both ears, that I had hope. And I know for sure “hope” always shows up.  

I have hope in the gift of technology. And I honestly have faith; she will always somehow hear. 

I have hope that tomorrow at 11:45 AM on December 16, 2016, we will add to our story of many memorable Decembers. We will welcome another beautiful new beginning by escorting Sophia to her most courageous moment yet. 

Sophia will be given hope and maybe a big miracle. She will be going into surgery to be implanted with her first cochlear implant for her left ear. 

Will it restore her hearing to natural hearing? Nope. It will be an electrical sound that will need to be trained.

Will she be frustrated for a few weeks without sound in that ear? Possibly, most likely. Thank God for her birthday and Christmas to distract her. 

Will the implant give her access to sound? That’s what we are told, and that’s why Sophia has chosen to jump. 

We couldn’t be more excited about the possibilities and more proud of her bravery. 

So while we have been overwhelmingly and humbly covered in abundant prayers, we ask that you, please pray for Sophia. Please pray for her healing. Please pray for the implant to do the job it’s meant to do. Pray for the skilled hands of our surgeon and the medical staff. Pray for the kind and loving audiologists who have loved and cared for along the way. Pray for the speech therapist to guide Sophia’s therapy in the coming weeks. Pray for the school to give some much-needed grace during this time of recovery. And please pray for my other 3 kiddoes who are beyond proud but understandably worried for their sister. And lastly, please pray for Jon and me as we let go and let God give us one more beautiful new beginning in December!  

Love, Me.

****

Here we are 3 years since I wrote this journal entry that I had planned to share with a few friends before I went to sleep on the eve of the surgery. I fell asleep writing this and never did share these specific words. Perhaps they were reserved for me until I came across them this week. I may have forgotten what I wrote that night.    

As I said, here we are, December 15, 2019, three years since that first surgery in her left ear and two years after the second surgery for her right ear. My girl now has no natural hearing left since those surgeries. She hears powered by electrodes of the cochlear implants when the equipment is on.  

She hears sounds and conversations more than ever before. The CI’s are a miracle for sure, and she still has to work hard to understand at times. She really relies on the ability to supplement sound with her mad lip-reading skills.

We have had unexpected challenges time and again. There has been grief over the loss of something that helps Sophia fully participate in the world. The trauma from having the ability to hear to have it unexpectedly and slowly taken away has been life-changing —it’s like losing a limb. 

There has been unexpected and beyond unnecessary challenges with numerous schools not supporting necessary academic accommodations. We are still trying to wrap our heads around the entire school experience over the years. Dignity and compassion were missing, as was an accurate and complete understanding of the ADA law and just basic humanity in some ways.  

Since I found these words (or they found me) in my journal in the last few days, I am reminded this journey has met many challenges, some we are still processing.  

The timing of this got me thinking here at the beginning of the third week of Advent.  

Being met with these unexpected challenges is not unlike the journey to Bethlehem that Mary and Joseph took. Their trek in the cold, dark time was faced with a lack of provisions, with physical struggles and with people turning them away. They did this all while Mary carried this unborn child destined to be a savior.  

An unexpected journey and hardship in the form of progressive hearing loss.

People (schools) turning us away.

A new life in the gift of cochlear implants offering us hope.

While we are hardly birthing a Savior, we choose to forge ahead, looking to Mary and Joseph as an example. They managed their arduous journey to Bethlehem despite the unexpected. They trusted and kept going. In doing so, they brought the world the hope it so desperately needs when we encounter difficult times. They brought us the “hope” we ultimately needed to help guide us on our challenging trek to our Bethlehem.

I am sure you, too, have had an unexpected journey, your own journey to Bethlehem.  

Rest in the waiting — Hope is to come.  

And in the lovely way my GOoD and Faithful Father delivers this Gospel message to me today. “When John the Baptist heard in prison of the works of the Christ. he sent his disciples to Jesus with this question. “Are you the one who is to come, or should we look for another?” Jesus said to them in reply, ‘Go and tell John what you hear and see: the blind regain their sight, the lame walk, lepers are cleansed, the deaf hear and the dead are raised, and the poor have the good news proclaimed to them. And blessed is the one who takes no offense at me.” Matthew 11:2-6