A letter to my second baby,

 

Today was a long day! Jimmy and I left early this morning to drive to Mercy Children’s in Kansas City, MO only to  return back home all in the same day. BUT…… Today is the first day in a long time that my favorite ten-year-old could hear ‘normal’ for the first time!  It was just Jimmy and me in the car for 10 hours and I would do it all again tomorrow to hear him say as we walked outside for the first time, “mom, I can hear you so well! Mom, I love your voice!”

For anyone who has listened to my worry, my fears and my tears as I tried to work through what was the best path forward for my son, THANK YOU!!! Today was it!!!

This all started 18-months ago when we received a note home from school saying that Jimmy had failed two hearing test and that we needed to see a third party audiologist. I truly thought nothing of this, ‘maybe he had an ear infection? Or likely just wasn’t paying attention because he’s an 8-year-old boy?’ But In June of 2020 (still the height of COVID), I brought all three kids to Jimmy’s appointment with an audiologist. I will leave names and practices out of this, because I hope this was a once in a lifetime fluke, but to say it was terrible service would be an understatement.

 

Upon check-in I was told that my other two kids could not be in the building, please know that this was still the time that both school and daycare were CLOSED, do to covid shutdowns. I didn’t have a choice but to bring them. When I was told that a nurse, who is a complete stranger, could sit in the car with my then nine year old and three year old I declined and said we’d have to leave. Everyone was frustrated, an they compromised saying that my other two kids could sit in the hallway, while I sat in the sound booth with a seven-year old boy who was scared. After so many tests, and me hearing the “beeps” but seeing that Jimmy was not raising his hand, I knew his failed hearing tests may not have been a fluke.

 

We were ‘over’ the limit of patient/parent allowed in a room because I had the other kids, so in the hallway of the waiting room, the audiologist read the results that my baby has sever hearing loss in his right ear, and she believed it to be so bad that she no longer thinks a hearing aid will work. “His hearing loss is so bad in one ear I would consider cochlear implants. This is a major surgery, but I hope this will help him from becoming deaf.” While my three year old daughter was crying for a ring pop that was promised to her if she behaved, I did everything I could not to break down crying. This was NOT the news I expected. I don’t remember how I left that women but I remember telling myself “breath…..just breath, don’t cry.”

Jimmy was already concerned, “mom, I don’t want surgery!”

Jake: Is Jimmy going to be deaf?

Jake: Do we need to learn sign language?

Jimmy: What if everyone makes fun of me? What if I can’t hear anymore

It felt like rapid fire questions, that I couldn’t answer, I didn’t know the answer either. I loaded all the kids in the car, turned it on cause it was 95 degrees out, and went behind the tahoe and sobbed for the fastest 5 minutes of my life, before pulling myself together, putting on a happy face and taking these three kiddos to get some lunch!

The follow up was to see an ENT to confirm the audiologist thoughts but this was only met with more confusion. The ENT completely disagreed with the audiologist an believed that Cochlear implants could make his hearing worse. He suggested two hearing aids, even though his left ear is fine. So back to the audiologist to figure out what to do. It was then that the audiologist said she believed that two hearing aids could make his ‘good’ ear start to fail. But “We can move forward and do whatever you’d like?”

I know this kid better than anyone else, but I am NOT and audiologist/ENT or hearing specialist, this is why we met with individuals that I needed to rely on for THEIR expertise. Not to put this enormous decision on me! I didn’t want my son’s hearing loss weighing in the balance of what decision I made.

So I sat on the information, I prayed…and I prayed…and I prayed! I talked to many people and again, thanks for listing to the story and my frustration. Thanks for making me NOT feel crazy. Thank you for encouraging me to continue to advocate for my boy!

And then prayers were answered! The president of my company let me know that his daughter is the pediatric Audiologist at children’s Mercy in Kansas City, MO and gave me her cell phone number just to have a sounding board. Kelly Bailey at Children’s immediately set my mind at ease. Jimmy and I were not a number, she heard the scared in my voice. She was kind, compassionate and talked to me like she had all the time in the world.

I got home that day, and I told Jared “You are going to think I am crazy, but I would like to go to Kansas City for Jimmy’s hearing exam.” All he said back was “I will go wherever you think is best.” Ahhh, that is why I love that man! It took a while to get into Kelly but from our initial screening with her until today it has been the right move! We discussed a treatment plan that we all felt made sense, she answered ALL our questions, and most importantly she spoke to Jimmy, she made him feel heard.

This is a long one, but this if for me, so I can remember what we went through and the day that my sweetest boy could hear again! On our drive home Jimmy said “I can hear the car driving on the road.” I can’t wait to see how this helps improve this smart little boy while in school and I pray that the kindness that Jimmy puts out into this world is received back and no unneeded comments are made about his new accessory.

Jimmy – you are the coolest, sweetest kindest boy and I hope you know how proud I am to call you son! I also hope you know how much I have prayed for the ‘right’ answer moving forward. While we don’t know if this is it, I feel peace in my heart that it’s the right step and I am right here to change directions if needed. I love you always, Mom!