A Parent’s Journey.
My husband and I are blessed. We have a funny, outgoing, charming 4-year-old that is absolutely full of life. She loves to smile, play, and sing, and will nearly talk your ears off. The unique thing about her is that by all clinical and medical definitions, Ryland is deaf.
Many may ask how we could ever consider that a blessing, but it’s because of the deafness that Ryland is who she is today. Ryland has cochlear implants, which she received when she was 19 months old, but her time without sound truly shaped her into an amazing and vivacious child. She developed a language of facial expressions at a very young age that she has never lost. To this day, she can contort her face in such a way to not only express what she’s feeling, but have you rolling in laughter at the same time.
Getting Ryland her cochlear implants has been a long journey and we now recognize that there were many signs we overlooked leading up to that life-changing diagnosis. I will never forget the phone call that started us down our path. My husband, Jeff, was working a 24-hour shift at the fire station and I was home alone with Ryland. My in-laws had called and shared with me their concerns that Ryland wasn't startling or turning to certain sounds.
Though it was so hard to hear, this was the final sign I needed to confirm the fears that I, myself, had already been feeling. In fact, Jeff and I had initiated several attempts to address our concern, but talked ourselves out of any follow through due to our inability to accept that something could be wrong with our perfect little baby. We already recognized that we tapped Ryland’s shoulder to get her attention, purchased visual toys because she preferred them, and that she wouldn't calm to our voices unless she saw us enter a room. We knew what we were likely facing, but we needed that final push to force us to address the issue.
I called the pediatrician, who saw us the same day that my in-laws called. Surprisingly, he told me "not to lose any sleep over it" but he would go ahead and order a hearing test. I will freely admit that we lost a lot of sleep over it!
The next day was much like a funeral. Even without an official diagnosis, we began grieving what we knew deep down to be true. My husband returned home and we began to do our own ridiculous informal testing. We banged pots and pans above Ryland’s head, screamed her name as she lay napping, and tried to walk up and scare her from behind. We received no reaction! We were confirming our fears and coming to the realization that our daughter may not lead the life we had always dreamed.
The next few weeks seemed like a blur as we attended countless appointments and began networking in our community.
I sobbed, thinking about Ryland leading a difficult, solitary life in a predominantly hearing world. We were completely overwhelmed and constantly searched the Internet for curable reasons to explain her lack of hearing. It was so disheartening, but it did lead us to the discovery of cochlear implants. We sat in amazement as we watched YouTube videos of small children hearing sound for the first time. That was when we first began to feel a sense of hope. Ryland, we thought, may just be able to hear live the life we had hoped for her, after all.
The next few weeks seemed like a blur as we attended countless appointments and began networking in our community. Ryland received an official diagnosis as profoundly deaf at 13 months, which was soon followed by the news that she had the necessary anatomy to be a cochlear implant candidate. The clock was now ticking. We knew that the sooner we could get sound to Ryland’s brain, the better chance she would have for success. We were warned, "not all children learn to speak with cochlear implants," since there are so many factors that play into a child's success, yet we remained hopeful and confident. We continued to push forward.
Our next challenge came in deciphering between and deciding which cochlear implant was the right one for Ryland. Unlike most implanted medical devices, the patient is given a choice of brands. It certainly didn’t help that we were dealing with a short window of time to make a decision, but we believed it was important to research what was available, and make the most educated decision possible. Thankfully, we were warmly welcomed to a group of San Diego BEA (Bionic Ear Association) members where we found it easy to gather information and make an informed decision.
Ryland went into surgery when she was just 19 months old. Activation would follow shortly after that. Our decision to have Ryland implanted was easy; we were thankful for an option that would give our daughter a door into the hearing and speaking world. In fact, the surgery was actually the easiest part for us. The true work has come after activation.
There are speech therapy appointments, audiology visits, mappings (programming of the implants), schools to evaluate and attend, and time needed for Ryland to just play and be a kid. I must hand it to her; she has been an incredible sport and an extremely hard worker. In fact, as I write this I am happy to report that she has completed her first day at a mainstreamed preschool and had an awesome day! This journey has been full of a lot of twists and turns, too many to detail in this article, but it has been worth every moment. Ryland is an incredible child, and it’s largely in part to her deafness. We are blessed!