There are few “jobs” in this world as difficult — and as rewarding — as being a parent. Life and destiny hand you a small human and an unpredictable 18 to 85 years, God willing, to create a kind person and to lay down the foundation for a future that is full of potential and kindness and joy. That in itself is ridiculously challenging and can be incredibly lonely. Factor in a child with special needs and you can feel absolutely alone. I love the idea of supporting other parents and offering a sense of community for those of us who face battles daily and mostly behind the scenes. 

Through this new series, “Special Edition”, I’m going to introduce you to some of the most incredible parents who are raising kiddos with a little extra something — an extra chromosome, perhaps, or an extra diagnosis; maybe it’s an extra health concern or an extra behavioral setback. These mommas (and dads, too!) are fierce, strong, resilient and willing to give their all and then some. I hope you learn a little bit about them and their  children; it is my wish that your eyes are opened and your hearts are warmed. I hope that if you too are facing challenges and difficulties in your everyday life as a parent, that for one brief moment while reading this, you no longer feel alone. 

Tell us about you and your family. 

My husband Jason, and I (Jennifer) have six girls. Yes, SIX! Avery(9), Natalie(7), Emily(7), and our triplets Maggie, Kit and Poppy(1). My husband is a full-time worship/creative pastor at our church handling everything from worship in all areas, to videography/production, to worship for weekly and special events…he’s your guy! I’m a SAHM and I homeschool our children.

Who are you specifically talking about today?

Our two eldest daughters have hearing loss; Avery and Natalie were born with Pendred Syndrome.

Tell us about them! 

Avery is 9 years old, currently in fourth grade. She is incredibly responsible for her age and very servant-hearted. She enjoys reading, baking and tennis.

Natalie is 7 and in the first grade. She’s a very empathetic child and while she has a very tender heart, is the bravest child I have. She enjoys drawing, making us laugh, and will soon start horseback riding lessons.

What diagnosis(es) do/does your loved one have? Would you say this is a visible or “invisible” diagnosis and do you think that makes things more difficult in any way?

Avery and Natalie have Pendred Syndrome. In our case, it was a recessive trait inherited from my husband and I (we didn’t know we were carriers). Pendred Syndrome causes sensorineural progressive hearing loss that can either occur slowly, over time or suddenly. Some of those born with this syndrome can also have thyroid issues potentially resulting in a goiter. So while this could be considered “invisible,” with the right hairstyle, it’s totally visible and should a goiter develop, that would make it all the more visible. Our girls get a lot of stares and that’s hard. The older they get, the more I know they’ll notice others. I’m trying as much as I can to teach them confidence, but they’ve yet to reach the age where kids can be downright mean…I dread the teen years! 

While Avery is the oldest, Natalie was the first to be diagnosed. She failed her newborn hearing screening and several months later, her hearing loss was confirmed through an ABR (Auditory Brainstem Response), a sedated, very accurate, hearing test. At the time we were told there was only a 50% chance we would know the cause of her loss, but decided to proceed with genetic testing anyway. The discovery was made several months later and the diagnosis quickly followed for Avery, who received her hearing aids just before her third birthday. 

What was your initial reaction to this diagnosis? What was your greatest fear? For older children, was receiving a diagnosis/getting answers a relief in any way?

I’ve never really talked to anyone much about what it felt like when Natalie was diagnosed with hearing loss. I’ll never forget standing in that sedation suite, holding my limp little baby. Our audiologist was such a kind, compassionate woman, but when the words, “permanent hearing loss” crossed her lips, the room went static. The heat rose in my chest…because you see, I knew all the preliminary tests had been wrong. I knew that she could hear perfectly fine, that this was all a big mistake and we’d be going home that day likely to never return again. I just knew it.

But I was wrong.

I must’ve nodded in shock and floated back to the audiology department as she led the way. I remember muttering “pink” when she asked what color aids I wanted to order for Natalie…but I don’t remember much else about that day.

In the months that followed, I was what my darling Blanche Devereaux would call “magenta.” I was red with anger, blue from sadness, yellow from fear, green with jealousy, lots of other feelings too, all mixed up… such an ugly color, magenta. I hated feeling this way. I’d never known true irony until this-a worship pastor’s child born with permanent, progressive hearing loss. Some days I thought my heart couldn’t take it. 

My biggest fear initially was safety. It still is. In every situation I wonder about the simplest of things. A smoke alarm. Emergency vehicles. Tornado alarms (we live in the south). Even moving out and living on their own. They just can’t hear some things. What if something happens and they don’t hear? What would happen to them? 

How does this diagnosis affect everyday life for this child? What are their greatest struggles?

Communication is obviously a huge barrier for us. At this point, the girls are pretty much deaf without their aids. They are typically very good about putting them on first thing in the morning, but occasionally won’t. 

They would say their biggest struggles are hearing in everyday life. Playing tennis with your coach? You have to remember your FM system! Talking in a group? Lay your mic on the table so you don’t miss something. Oh, you missed something? Well… never mind. (*Please* don’t say “nevermind” to a person with hearing loss! Kindly repeat yourself!)

What do you think is the biggest misconception with your child’s diagnosis? 

People think that hearing aids are like glasses and correct the issue. They don’t work like that! The hearing aids can be adjusted and yes, make things louder. They can’t, however, make things clearer. And while certain kinds of aids work for some, they may not for others. For example, Avery and Natalie have almost the same exact loss. Behind-the-ear hearing aids (BTE’s) work great for Avery right now, but were not such a help for Natalie. She required a Cochlear Implant to help clarify spoken words. No two people with hearing loss are alike –even siblings.

Does your child have any other siblings? How much do they know about his/her diagnosis? How, if at all, has it affected them? What impact do you think it will have on them longterm?

Emily doesn’t really think a lot about the aids, but she has hearing loss, too. The babies are much too young to notice.

What does an average day look like for you and your child? 

We school immediately following breakfast and can usually finish right at or a little after lunch. During various days, we have tennis for Avery, horseback for Natalie or speech and/or hearing impaired therapy (five/six sessions weekly). Usually by late afternoon, early evening I can tell they are getting mentally fatigued. A study done by the American Journal of Audiology in March of 2014 found that children who are deaf or hard of hearing experience more fatigue that children who have cancer, rheumatoid arthritis, diabetes, and obesity. Listening is hard work on the brain! 

What areas are the hardest — everyday functions, education, employment, behavior, etc — and why?

Everyday functions, I would say, can be challenging. My girls rely heavily on routine. They know what’s coming next without me having to tell them, but throw a wrench in the day and I will need to answer many questions. Not to mention making sure I have all I need for them. Did I pack extra batteries in my purse? Did I charge their FM systems? Did they put their aids in the dehumidifier last night or should I stick them in there long enough for us to get ready? Where is the cleaning tool!?!?

How has your life/ your parenting changed because of this journey? 

We’ve always been pretty relaxed parents and I hope that I could say that still. I do have to be terribly organized because of the items we need in order to leave the house and the numerous sessions we have each week. I’ve found that I have to be conscious of myself as well. I have to make sure to get enough rest. If I feel the slightest bit sick, I try to take something-I can’t let them miss therapy because I’m sick. 

What is your greatest wish you have for your child? 

That there would someday be a cochlear transplant available, just as heart, lung, and other organs are today. That someday they could hear just as clearly as I do. 

But…more realistically…I wish that they would always have confidence in themselves. To know that they are a complete and whole person. To be forever comfortable in their own skin. 

ANYTHING ELSE! Share whatever is on your heart right here, my friend. 

I just wanted parents to know that it’s totally normal to grieve when a hearing loss diagnosis happens. I had someone tell me, “well, it’s just hearing loss. She’ll be fine!” 

Shame.On.Them. 

Don’t ever let anyone minimize this for you. I grieved the loss of the life I thought my child would have and then-only then-was I able to pull myself up by the bootstraps and embrace the life they were born with. I won’t say that I don’t find myself somewhere on the grief cycle occasionally, but ultimately I know that with Jesus and each other, we can and will do this!

If people would like more information on this, where can they find it? 

Simply check out Phonak and Cochlear Americas. They have lots of resources regarding loss and their hearing aid products. Also, simply Googling “hearing loss resources” bring up a number of pages that are very helpful in educating oneself about loss. I would also recommend following Valli Gideons on Facebook under “My Battle Call by Valli Gideons”. 

Please note: We are not medical professionals or scientific experts. We are providing a human-based glimpse into daily life with certain diagnoses. For more information, please seek a professional affiliated with this condition.

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