Silas

Silas wasn’t even 24 hours old when he failed his first hearing test. As a brand new mom trying to juggle hormones, breastfeeding and everything that comes with this, I don’t think the possibility of Silas actually being deaf ever really crossed my mind. Before we left the hospital he had a repeat screening and I figured everything would be fine but instead, my perfect brand new baby boy failed the newborn hearing screening in both ears for a second time. I desperately asked for words of encouragement from every doctor and nurse that had wandered their way into my room, almost begging them to tell me that this was common and seen often, even if it wasn’t.

We had to wait TWO WHOLE months for an ABR (Auditory Brainstem Response test). I was so excited for the ABR test - for them to tell me he was fine - but at the same time, so terrified for them to tell me that he wasn’t. Finally the day came. I remember the look in the audiologist’s eyes as she told me that the Auditory Brainstem Response test did not register brain response to any of the sound frequencies they had tested. She then told us that the minute amount of fluid in his ears wouldn’t be causing the severity of hearing loss he has and we won’t know more until the fluid has drained. Basically, “Your baby has severe to profound hearing loss and we don’t know how much of that is permanent until the fluid drains, but we know there is in fact permanent hearing loss.” All I heard in that moment was, “Your baby is Deaf’. I can’t explain the feelings that had come over my body, but I know I was in denial. I blamed the audiologist. I questioned her credentials. I accused their machine of being faulty. I accused her of being cruel and insensitive. My child could hear, he was fine and she was wrong. I left the hospital that day with so much anger and fear. I barely knew how to be a mom in general and now I had to learn to be a mom to a deaf kid? What does that even mean? I cried. I cried so much. And then I cried more.

The days after his appointment were a few of the worst days of my life. The tears were flowing, I can’t even count the times I asked God why and begged him to let my baby hear my voice. I begged him to take my hearing and give it to Silas. I prayed for strength to get through this as a mother and prayed for strength in my relationship so that the path down this road in parenthood wouldn’t destroy us. All of this was happening and I had a brand new baby. These feelings were taking over. Silas was two months old and still nursing around the clock, looking down at his perfect little ears each time knowing that there was a possibility they didn’t work, it broke me. I still didn’t want to believe it. Before Silas came into this world, I read all the books. I read all the parenting blogs. The magazines. Joined mommy groups. I had a plan. I was prepared for everything. But not this.

At four months old, we went back to the audiologist and found out that the fluid had drained from his ears, this was such good news. The BEST news. And it wasn’t until we went back for his second ABR about a month later that the tiny ounce of hope I held onto was ripped from my heart and soul as I heard the words, “Silas has profound bilateral sensorineural hearing loss. Your son is permanently and profoundly deaf in both ears and we don’t know the cause.” I was devastated all over again. It was like my heart had been broken a second time. I was so confused. Still blaming myself. Still not knowing what was next. This was by far the hardest day of my life. I remember coming home and laying in bed, not moving until the next day. With this came all sorts of information, all sorts of worry. We found out that not only did our baby have profound hearing loss; but we need to be watching (and soon testing) for signs of correlating syndromes and diseases that can actually cause hearing loss…over 300 of them. Talk about overwhelming. I was terrified. I didn’t think I was capable of being this little guy’s mama. I didn’t think I was cut out for this job. I didn’t think I was strong enough.

We immediately scheduled an appointment to get our baby fitted for his first set of hearing aids! I had hoped that he would be able to access speech sounds with the aids, but statistics show that someone with his degree of hearing loss, the odds were against him. The internet became my best friend and my worst nightmare. Don’t get me wrong, I found some extremely helpful scientific information. But with that comes the scary stuff…the worst of the worst. I’m sure you can imagine that at this point we had talked about our options moving forward, and every free moment was spent researching until we couldn’t stare at the information any longer. We taught ourselves a little about the Deaf community and even enrolled ourselves into ASL classes. It was very early on that we were told about the possibility Silas could qualify for cochlear implants, although I never thought it would come to that.

At some point between finding out for sure that Silas was deaf and him receiving his hearing aids, I decided that I needed to change my perspective and approach to his deafness. I was spending so much time wondering what I did wrong and letting sadness take over me that I was missing out on this amazing life that I brought into this world. I was so concerned about the “what if’s” and “how come’s” that I was forgetting that before anything else, I was his mother. And he needed me. He needed me to be strong. He needed me to be mentally and emotionally healthy. I needed to stop feeling sorry for the situation and take charge of it. I couldn’t let myself continue to go about motherhood in a fog. Enough was enough. I consciously chose to embrace this amazing journey with open arms, living one day at a time. I have a healthy, beautiful, squishy son. I realized that I needed to thank God for what I had instead of obsessing over what I didn’t have, more so what he didn’t have.

Silas received his hearing aids in early April 2018. The day was amazing! As soon as we turned them on he recognized that something had changed. We aren’t sure what exactly he heard but there was an undeniable change in his behavior. I was elated. Over the next couple months in between new molds and speech therapy, we understood that the aids weren’t giving Silas what he needed to develop speech. After implementing sign language into his daily routine, Silas started communicating with us - Milk, More, Mom & Dad were his go-to’s. To the surprise of his therapists, Silas was even giving us a couple consonant sounds through his babbles.

After realizing that the aids weren’t giving Silas access to what he needed, the cochlear implant situation was staring us right in the eyes. We weren’t sure it was for us. We weren’t even sure he was a candidate. But it was the next step. At this point, Silas was almost 9 months old, healthy, smart and thriving with sign language. Steve and I knew more and more about the Deaf community. We had completely come to terms with this life that God chose for us. We knew that no matter what path we chose for Silas, that he is and will be okay.

We took Silas to a cochlear implant audiologist so she could qualify him through his hearing. We took Silas into a sound booth and it reminded us that even with his hearing aids, our baby’s world was almost completely silent. Silas was then taken to his Audio-Verbal therapist who did an evaluation on him to see what his projected success would look like with the implant, they said he was the epitome of the perfect candidate.

Our research on the cochlear implant continued. We found users young and old to compare stories. We wanted to know the good, the bad and the ugly. We talked to multiple doctors. We talked to individuals in the Deaf community who use implants vs. those who oppose them. We learned how the surgery is performed, how the implant works and what Si’s options are moving forward. Steve and I decided, after long discussions, that this was best for our little boy.

The day came of Si’s surgery - January 18th 2019 - six and a half of the longest hours of my life. They made me question every decision we had made for our boy up until the point. Everything with the surgery went as planned and I’m pretty sure recovery was harder on me than it was on him—he was back to himself two days later. Little did I know that this was the beginning of such an amazing, rewarding journey for our family. Silas’s CI (Cochlear Implant) activation day was February 5th, 2019, which is the day he heard his mom and dad’s voices for the first time ever.

It’s been a year now since his surgery and Silas is absolutely thriving. He’s saying around 15 words verbally and more than I can count in sign language. We are continuing with total communication meaning we are giving him access to speech and sign language. You know, some days it’s easier than others. I’d much rather take him to the park than to all of his therapy or audiology appointments. Keeping his CI processors on as a two year old is almost impossible. And getting him to sit, interact and intentionally play at therapy or at home can be quite the task. Hearing/listening and understanding does not come naturally for CI users, it has to be taught. Every noise around him is heard as one giant sound and he has to learn to focus on what’s relevant. It’s a learning process for us both every single day. But, he is the most compassionate and caring boy. He can tell by your body language when you need a hug. He has been so observant and inquisitive of the world around him since the beginning, it makes you really think of the small things that matter most. He tells me when he wants his ears on and off and sometimes I get jealous of his superpower. His first combination of words both spoken and in ASL was ‘I love you’ and if that doesn’t say the most about who he is, I don’t know what will. I also get to learn a new language and meet people I may had never had the chance to. Having a deaf child as a hearing parent is the most rewarding journey, he has opened my eyes and my heart to an entirely new world and for that I am so grateful.