What They Didn’t Tell Us
By Kam and Emily Rokon, Nebraska H&V
Instead, I wish someone would have just told us: “you are going to be parents of a child with a hearing difference and just like all parents do, you’ll figure it out as you go.”
Four years ago, we rolled our baby to the nursery to have her newborn screening test. As new parents, we couldn’t stand the thought of her being out of our sight even for one second. We had no clue at this moment, the pictures we took with those little headphones on, and the words the nurses said to us during this test would forever be a part of our story. She failed the test, but the nurses reassured us that was normal and most likely would be nothing to worry about. Since we were assured that it was “probably nothing”, only one of us took Juliet to her follow-up appointment alone, expecting to hear, “all the fluid has cleared, and her hearing is great.” As you can guess, that was not the case.
At three-months-old, Juliet was fitted for her hearing aid and we walked out of the hospital terrified of that little device. Now, she’s 4 years old and “Hira” is a part of who she is. It’s the first thing she asks for in the morning and taking it out is the last part of her bedtime routine “Hira” is the name we gave her hearing aid initially to make it less scary for us and to make it feel as important as it was to our daughter and our life. We were told how to clean Hira, how to put it in her little tiny ear, how to communicate with her, when to schedule appointments and the list of things we were told how to do could go on forever. We were new to this world and it felt like we were constantly being given directions about how to live in it. There was a moment when we were talking about how little we knew and how unprepared we were for all of this, but in that conversation, we also realized that no parent is prepared for parenthood, not fully at least. It was only in hindsight as we look back on these conversations and wish we were told so much more about our daughter.
What we weren’t told is how even though everything had changed when we found out she had a hearing difference, actually nothing had changed. Juliet is exactly who she’s supposed to be. Our daughter crawled when she wanted to pick up a book and we caught it on video. She ate avocado as her first food and loved it. It was as messy as we imagined with a baby, and even messier with a toddler. She learned to walk and we were terrified each and every time she fell down. Once she fell in Target and I think all three of us cried a little because it was the first time she was really hurt from falling. Juliet loves books and chooses the same one over and over again for weeks. She loves Pinkalicious, Fancy Nancy, dancing, music, and loves to talk. All we did for the first couple of years of her life was talk to her. We didn’t have the television on, we didn’t play background music and we told her every detail about everything we were doing. We were storytellers of our life because we learned how very important getting more words in would be to her vocabulary and language development. Now, we feel the wrath of that when she tells us every detail of everything she does. We are always laughing about how much she talks and how we used to fear she that would never learn to communicate.
Juliet was born with hearing loss and we might not have known that day but nothing changed after she “failed” her newborn screening test. We are the parents of an incredible little girl who is growing into an amazing person and teaching us daily. Her hearing difference has given us focus in parenthood. We have read, researched, listened to advice, gone to conferences, and spent a significant amount of time learning how to do everything possible to give our daughter the tools she needs to own her difference and to succeed exactly as she’s meant to do. We both feel like we missed out enjoying moments with her, because we were so concerned about the future. Instead, I wish someone would have just told us: “you are going to be parents of a child with a hearing difference and just like all parents do, you’ll figure it out as you go.” We look forward to sharing what we have learned with other new parents through Nebraska H&V. ~
H&V Communicator – Fall 2020