“There have been times I regretted this journey entirely. I wanted to take back every decision that led us to this point of watching my curly headed, second born being wheeled back into yet another surgery. I wanted to go back in time. Better yet, I wanted to take it from him.
He was diagnosed as profoundly deaf shortly after he turned one year old. In those early days, I was devastated. It was just a stage I had to go through, a crumbling of how I thought his life might play out. Would he ever enjoy music? How would I talk to him about God? Would everyone in our family and friend group try to learn sign language with us? Was his deafness indicative of a larger picture? I was spiraling, but as mothers often do, I also became motivated. It was my job to take care of him, protect him, and give him the very basic need of communication. I knew I had to make some moves.
I bought a sign language book and woke up early in the mornings to have my coffee and practice. I also started searching the internet for information on raising a deaf child. It was there I first realized there was a long history and rich culture in the Deaf community. I also began to research cochlear implants. I had only seen them before, but I didn’t know exactly what they did, how they were different from hearing aids, and what the process would be like. Nothing could have prepared me anyway.
Our insurance approved his cochlear implant surgery, and we were as ready as could be when he entered the operating room, just a few months shy of his second birthday. To say I was an emotional wreck would be a significant understatement. Two weeks prior, I had given birth to our third child, making me the proud mom of three bouncing baby boys under the age of three. My third child also failed several hearing screenings, although he was later determined to be a hearing child.
I had my mom and aunt bringing me my newborn every few hours so I could nurse. When I wasn’t feeding my newest addition, I was coping with ice cream cones and scripture in the hospital’s cafeteria. Before we knew it, the surgeon was calling us in for his post operative update. ‘Everything went perfectly! He’s done.’ If that sounds too good to be true, it’s because it was.
Before his first surgery, I spoke with other cochlear implant parents (in person and online) who told me how easy recovery had been for their child. ‘He’ll surprise you,’ they said. Our experience was not typical, though. He was very sick. I immediately understood something was wrong, and our story would not be the one I had hoped for. His balance was off, Bell’s Palsy drooped his features I’d come to know so well, and most concerning to me, was how lethargic my two-year-old became overnight. These symptoms stretched on for months, and fear welled up inside me.
Weeks after the initial surgery, we were scheduled for activation day. This is when the external portion of his cochlear implant would be turned on for the first time. It would be the day he would hear for the first time in his life. We anxiously awaited a response to let us know all of this hadn’t been for naught. We got it! He heard his daddy’s voice, and it startled him. It was incredible to watch him try to locate the first sound he ever heard. What we found in the coming weeks, was this little boy loved to hear. Many times, parents have a hard time keeping the processors on their kids. Abel reached for his device as soon as it came off. He even slept in it for a very long time.
He soaked in so much information, and it wasn’t long until he said his first few words. It wasn’t easy. We were in speech therapy multiple times a week. We were also going back to the audiologist and surgeon a lot, to tweak his programming and the antibiotics he continued to require. Much time passed as he struggled to battle an infection raging inside his head. As we approached the one year anniversary of his first CI surgery, we had exhausted all options, and one of his implants had to be removed. Again, I felt partly relieved to have it gone and partly sad to see it go.
When other parents were celebrating their child’s first full year of hearing, I was going into the same surgery again to have it taken out. It was disappointing. Eventually, my son was released from Infectious Disease, and I never wanted to step foot in that city again. We snapped a picture and didn’t look back. I just wanted to get home, be together with all of our family, and have all of this just be chalked up to a rough year. We came home to ‘Welcome Home’ signs the kids had used to decorate his room. We thought this was the end of his year long battle.
He began to make so much progress. New words were turning into longer sentences and thoughtful questions. We continued to attend weekly therapies, and we developed a relationship with a local audiologist, so we didn’t have to travel so far when problems did arise. His problems became more manageable, though. Once our dog chewed up his device! Another time, he lost it in the endless leaf pile on our tree farm in Tennessee. One year, it fell off at the first basketball practice of the season, and broke. It was right before his birthday, and he was so sad not to be able to hear while we waited on his shipment to come in. I teared up at his practice because it was one of those days I wanted just one thing to be easy for him. I spent the remainder of his practice trying to interpret for him, as he continued to ask for his sound back.
There have been plenty of ups and downs. The grief of his extra challenges sometimes hits me when I’m not expecting it, but he handles it all so well. He is seven-years-old now, and he manages his equipment on his own — charging the batteries at night and placing his device in the drying box. He turns his deafness into perks or party tricks. I’ve seen him take magnets off the refrigerator to put on his head to show his friends how he’s magnetic. When baby number four arrived, he would take off his processors when she was crying a lot. There have been times when it’s thundering, or one of his brothers has the loud fan on too high at night, and he just smiles and says, ‘I bet you wish you were deaf right now, too.’ He is an amazing kid and has taught me so much through all of this. His perseverance is unmatched.
In early 2019, he began to have some concerning symptoms we brought up with his pediatrician. Old problems swelled up, threatening to burst the comfortable bubble we had been in for the past few years. Before long, we found ourselves back to the place where my son spent much of his early childhood… in cold waiting rooms and hospital beds. Back and forth we drove, sometimes with four young children in tow.
Again, we learned he would have to have yet another surgery to clear out the infection. That also meant his summer would look a lot different. There would be no submerging his ear, so swimming in the lakes, creeks, and pools of our East Tennessee home would be out of the question. Blow after blow, and he just keeps getting right back up, stronger even.
Remember those questions I asked myself after the diagnosis? That child is now leading our family in prayers at the dinner table. He recognizes the works of Vincent Van Gogh, Mary Cassatt, and Winslow Homer. He is taking piano lessons. He is learning to read and write. He makes friends easily. He’s loud and energetic. He’s funny. He plays basketball and recently ran his first 5K. He knows more about dinosaurs and sharks than I do. He likes to work with numbers. He takes toys apart, just to learn how to put them back together.
He loves games and music. He listens to Beethoven as he works on school. He appreciates other bands like CCR and Queen. He’s accomplished impressive hikes in the Great Smoky Mountains. He has gone backpacking, carrying a spare battery to ensure he can hear during the entire trip. He loves to camp and fish. When he goes swimming, he works on his sign language skills. Above all of that, he is kind and thoughtful. There is nothing he can’t do.”
This story was submitted to Love What Matters by Kacy Weigle, of TN. You can follow their journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
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