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A Pastor, A Mama, And The Mouse

A little trip down memory lane

In honor of my N’s 6th hearing birthday just last week and the fact that she turns T-E-N next week (which just isn’t simply possible – there is no way I am old enough to have a ten year old let alone that we have been doing this crazy life adventure with her for an entire decade) I’m going to share with you some of our experiences with a deaf kid! 

Back story (because just like any superhero there has got to be an amazing backstory): 

N was born on probably the hottest day in the summer of 2013 in Chester County, Pennsylvania. I vividly remember 1. Trying to evict her MANY times within the few weeks before her arrival and 2. That they were doing rolling black outs in Chester County that summer and we all thought we were going to die of heat exhaustion when we left the hospital. 

She made her way abruptly and in her own way into the world. We like to joke that she attempted to come into this world running and she just simply has not stopped. This is a little girl (who isn’t so little anymore) that let’s absolutely nothing hold her back or down. We left that hospital a young mom and dad in their early 20’s with their first bundle of joy, knowing that something was possibly wrong with our perfect little girl. The doctors and nurses assured us that even though she had failed her newborn hearing screening twice in the hospital that it’s okay … “95% of babies who fail in the hospital have nothing wrong with them” “she was a c – section baby so she just must have some fluid still in her ears” … boy were they wrong. They gave us so much false hope. Within her first 4-6 weeks of life she had been seen by many many doctors and failed many many hearing screenings, but hey! At least all the other tests they were running came back completely fine! Her kidneys were fine. Her eyes were fine. Even her actual cochlea’s were perfectly formed. 

By the time she was 9 weeks old we had our first ABR (automated brain stem response test) this is a test that can look extremely scary with your baby hooked up to all sorts of wires while they nap and the doctor attempts to see what the brain truly can hear and process while bypassing the ear. It was then on that warm summer day in August of 2013 that we found out that our baby girl, our precious gift, our perfect little one was diagnosed with Severe Bilateral Sensorineural Hearing Loss. She basically could hear not hear anything below 90db.

((Check out this video that will help you understand what it is like for a deaf person https://youtu.be/5RVhXibbzRo

Our sweet little angel, the one who I sang to every night (or like 10 times a night) couldn’t hear a single thing. She couldn’t hear us say her name. She couldn’t hear us tell her we loved her. None of it. Insert an insane amount of mom grief right here. I was the one who carried her for 9 months. The one who nurtured her and cared for her – there must have been something I did wrong within that time period to lead to this. It was me. It was my fault. I ruined anything. But what I forgot in those moments as I let the enemy begin to tell me everything i had done wrong during my pregnancy, like going to a Martina McBride concert when i was 9 weeks pregnant (because that had a whole lot to do with anything) was that I may have carried her for 9 months but God is the one who knit her together so incredibly intricately within my womb, He knew her before she was even a thought in our brains, and he made her perfect just the way that she was. Was it exactly how we imagined? Absolutely not – but let’s be honest when is life ever the way we exactly pictured it? Fast forward a few weeks and we had the most adorable baby on the block with her bring pink ear molds and her first set of hearing aids. An adventure that we never thought we would have to embark, but was quite possible one of the best adventures we could ever be on. 

Over the course of the next few years we were connected with the best resources available to us. We had Teacher of the Deaf’s (TOD), speech, OT, case managers – no matter where we were we were surrounded by a support team. As soon as everyone, and i mean everyone, heard of our diagnosis we had care and support – sometimes it seemed like too much, but we were loved and so was our precious girl. 

If you’re walking on a path that you never thought you would be on and you’re feeling the mom guilt let me assure you that you’re doing great! You’ve got this! You are an awesome mama – the fact that you CARE makes you enough for your kiddo. 

Need some resources because you recently found out your kiddo is deaf? 

We LOVE Hands and Voices this is an organization that helps families with deaf kids if it’s support you need, they’ve got it, a listening ear, they’ve got it, the want and need of a community, you’ll find it here. Check out your local chapter! handsandvoices.org 

Don’t be afraid to ask questions – learn as much as you can – FAIL (boy have we failed a lot over the course of these last 10 years) – just keep loving, keep learning, keep moving forward. I promise you -you’re doing a great job! 

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