Will

Will was born on May 6, 2019, we were overjoyed as we welcomed our first born son into this world. Before leaving the hospital, Will had a Newborn Hearing Screen that he did not pass. We were told it was probably just fluid in his ears not to worry and to come back for an outpatient visit the next week. We returned the next week to the hospital in hopes he would pass but we received the same results. We were told we would be contacted to schedule an ABR (Auditory Brainstem Response) test within the next few weeks.

When Will was 6 weeks old my husband, Ross, and I took Will to Benioff Children’s Hospital in Oakland for the ABR with not much of a concern other than trying to figure out how to keep Will asleep for two hours for the test. I remember looking down at him with electrodes on his forehead crying because I hated seeing him like that. When the test was complete the audiologist left the room and returned with brochures. She said to us, “Your son has profound sensorineural hearing loss but there are amplifications to help him if he is a candidate”. “Ummm what does that mean?” was my honest thought. I looked at Ross and I believe we were in a state of shock and confusion. I responded to her, “So are you saying that my son is deaf?” and she said, “In layman’s terms, yes”. I had never met a deaf person before or had even heard of cochlear implants.

When you are pregnant with your first baby, in my opinion, you have all of these expectations: “Will he look like me or his dad? What sport will he play? Will he have blue or brown eyes? Will he love music just like us?” Never in my wildest dreams did I think I would have to question “Will my son ever hear my voice? Will he be able to communicate by speaking to me? Will we have to learn sign language? Will he be able to attend mainstream school? Does he have an auditory nerve?” The unknown was definitely the hardest for me and Ross. On top of having a newborn and adjusting to this new life while being sleep deprived, we had been thrown this huge curve ball. This was definitely the toughest challenge I had ever faced in my life. Our little baby that we love more than anything and just want to protect has what people refer to as a disability. We found out on July 17th after Will’s MRI that he was a candidate for cochlear implants. We immediately knew we wanted Will to have cochlear implants and it’s the best decision we have ever made in our entire lives. We want him to have every chance and every opportunity to succeed in this big world. Will was implanted the day he turned 7 months old, on December 6th. As nervous as we were for this long four hour surgery, Will handled it like the big champ that he is. He was back to his normal smiley self just a few hours after surgery. We were amazed at how resilient and quickly he bounced back. He is truly the strongest person I know. Will was activated on December 23rd just two days before Christmas, it was our Christmas Miracle! We were told he probably would not react once he was activated, to not have any expectations. Will showed us how awesome he is once again and as soon as our audiologist turned on his CI’s he immediately stopped what he was doing looked up and then turned and threw his arms around my neck for a hug. We knew they worked and it was truly the best moment, one we will never forget!

Will has been activated for the past six months and his progress is astonishing. Will has speech three times a week, he works so hard to hear and speak but thankfully he loves learning and he LOVES his “ears”. He is so vocal now and he is a social butterfly! To watch him turn his head and look at us when we say his name, to see him react to all of the environmental sounds that we take for granted such as the birds singing, Butter (our golden retriever) barking, and the airplanes in the sky, to watch him enjoy and dance to music, and to hear him say his first word “Mama”, is something we will forever be grateful for. This unbelievable technology has let him enjoy sound and gain a sense he was not born with, it is truly a miracle!

Now Will is 14 months old and selfishly, his deafness has been the most incredible learning experience for me. Yes, there were tough times in the beginning, but the outcome has been so worth it. We have loved meeting so many wonderful people on this journey, from our team at CHO, Will’s speech therapists and so many other families who have children with cochlear implants. We all have this special bond and it has been so amazing hearing their stories. I now have a new sense (no pun intended) of gratitude for people with hearing loss or any other disability. His deafness has opened up a whole new world for us. I love learning about deaf culture and American Sign Language. Will is already signing a total of ten words and he loves his signing books. I have also learned so much about inclusion and acceptance and embracing what makes us different. My hope is for parents to teach their children about differences, whether that may be how some children communicate differently or act or look differently, because we all have something that makes us unique and special. Also, to teach children to ask questions when they notice a difference, which is something I will try my hardest to teach Will. Will is just living his best toddler life; he is so active, he just learned how to walk, he has a love for sports especially tennis and thinks his best friend Butter is the funniest thing in the world, all while rocking his cool special blinky ears. And we can’t wait to see all that he does in this world with his special “ears”!