Love Blooms
My daughter, Jayde, is profoundly deaf. She had no access to sound until she was almost 6-years-old and when we met her for the first time at the age of 5 1/2 years, she didn’t have language either. I am confident she had language no one understood because her ability to connect with people was uncanny. People are drawn to her everywhere we go. We knew she had hearing loss before adopting her, but never in my wildest dreams did I suspect hypoplastic VIII auditory nerves. Jayde would change the course of our family’s life and everyone she touched, as well as my views on deafness.
Jayde wears two cochlear implants and because of advanced technology, she has full access to spoken language. She is the only child in the world wearing the technology she has because she needed more power than traditional cochlear implants could give her. She grabs them first thing in the morning and it’s the last thing she takes off at night. She has always wanted to wear them.
YES - a child with hypoplastic auditory nerves can have full access to spoken language. It can be done and has been…Jayde is living proof (another story for another day).
But, this is not the point. I’m an audiologist and knew I could fix Jayde’s hearing loss. All you had to do was ask me and I’d tell you exactly how to raise a deaf/hard-of-hearing (HOH) child to speak and listen because I was a highly trained professional and an expert.
Enter Jayde.
Notes to self: I know absolutely nothing.
Since the day we met Jayde, our hearts have never been the same. Although I considered myself an “expert” in all things related to hearing, the reality of it was much more different than I was prepared for. Here are a few things I’ve learned:
Jayde was never broken. Jayde was meant to be in our family. There was much more for us to learn from her than she could learn from us. She taught us we are all broken - just in different ways. The way to healing is acceptance and a humble heart. You just can’t fix what ain’t broken and that pride - it’s one of the deadly sins for a reason.
Jayde dreams BIG. There isn’t a mountain big enough she can’t climb because no one has told her she couldn’t. We hold the bar high and have never believed Jayde can’t do what she wants. There are days when the battles seem unsurmountable and some days we take baby-steps. Other days we race for the top! Baby-steps are not set backs, they are just part of the process of maturing. Always move toward the dream even if there are no steps at all.
Speech is not a substitute for language. There are misconceptions in the world about speech versus language. Many believe if you can speak well, you naturally have good language. In our experience, that’s not been the case. Forfeiting language at the expense of “good speech” will have consequences later. On the other hand, forfeiting speech at the expense of language also has its set of problems. As a professional, I was “all in” for making sure the kids I worked with had full access to spoken language so they could have “good speech.” As Jayde’s mother, I’m “all in” for making sure she has the best speech and language she is capable of using any method - or combination of methods - to make it happen. I’ve learned deaf kids can benefit from both.
Living with hearing loss is different than working with it. I know many talented professionals who believe they know what’s right for your child. This doesn’t make them bad people because they can’t possibly know what they don’t know. Living with a profoundly deaf child is different than what I was educated and trained to believe. The reality is “one day at a time” and doing whatever you can to help your child live to their fullest potential. No one else knows your child like you - or understands your journey before, after, and now. Make informed and educated decisions on behalf of your child and be at peace with yourself and her/him. The rest works itself out.
Random people always have opinions about your choices. It’s an odd thing, but having a deaf child gives people a weird sort of liberty to verbally vomit all over you about how to raise your child. I guess they think they know more about it than you do. I am Jayde’s mother. No one wants more for her than I do. Others need to understand if I want your “opinion,” I’ll ask. Otherwise, don’t be offended when I ask you to please shut your pie-hole. The worst offenders are usually other deaf individuals and/or interpreters who only have one thing in common with Jayde - hearing loss. Jayde’s identity is not about her deafness - it’s about what an amazing, intelligent, and joyful young woman she is. Being deaf is just one characteristic - not the only aspect of who she is. It’s mostly about her “can and will do” attitude and how she can achieve anything she wants with or without hearing.
Nothing is quiet about a deaf child. This one doesn’t need an explanation.
Jayde walks amongst angels. Where there is Jayde, there are miracles. From being alive, getting the technology that allows a child with hypoplastic auditory nerves full access to speech, to a tornado leveling a hospital, and trying to blow away her implants for her second surgery (to name a few) - this child walks with an angelic army. Her beautiful spirit has challenged my faith in understanding things I would have never thought about had I not seen it with my own eyes. I am reminded that the pure of heart are not the ones continually professing it - they are almost always the ones who are overlooked and marginalized.
Don’t release the Kraken! I have experienced rage I’ve never known existed inside me. Having to watch my child discriminated against and denied what she needs triggers reactions I didn’t know existed. Be aware and very, very scared about poking the parent of a child with disabilities. You may be surprised by what you get.
Advocating is a way of life now. If you have a child that is outside the norm, resign yourself to the battle. It’s exhausting. From the education they receive, medications they need, to the health insurance that denies the very thing they need - be prepared to get in the ring. For those who underestimate the parent of a child with disabilities, refer back to #8. Be careful about poking the Kraken.
Love blooms everywhere. Face your child’s face to the sun, plant them in fertile ground, and water them with as much love they can swallow. These are the things that matter most. Don’t worry about who their friends will be, if they’ll talk, or where they’ll go to school. Jayde knows she is loved unconditionally which gives her the ability to take risks. She knows it’s not about the methodology we use to communicate, devices used, or education received - it’s about her confidence in knowing she is always loved. She grounds me so I have a better understanding of what’s important. Jayde has made me a better person in every aspect of my own being and reminds me that even though I’m broken, I can still be loved.
