7/25/16…… The day I found out my baby is deaf

The day started out like any other day. We woke up, I sang silly songs while I got James changed and dressed, we giggled and then had tummy time. It just seemed like an ordinary day. 
We had a 1:30 appointment at the audiologist that day because James failed his hospital hearing test. We were told that failing the test was not that uncommon, so I figured everything was going to be fine. I mean honestly, MY baby wasn’t actually going to have any issues. What are the odds that James would have any issues with no family history. 


However a couple hours later I received this news….

“Your baby has significant permanent hearing loss. His results didn’t show a consistent response to any of the tests we performed and for the one test showed no movement at all.”

Wait what? 
This can’t be right. My baby is the happiest baby in the world. He smiles and giggles whenever he sees me! 

This just can’t be true. 

“Okay”, I say with tears streaming down my face. “What does this mean? What do we need to do next.” 

“We will refer to you a ears nose and throat doctor at CHOP. There, they will run more tests to check the severity of the hearing loss and hopefully fit him for hearing aids or, if he qualifies, a cochlear implant. There is a chance there is fluid in there that would be blocking some noise but even if that is the case there is still significant impairment. So no matter what he will need some hearing assistance”

“Okay” I said. 

As I leave the doctors office in a complete haze I struggle to understand what was just said to me. Did the doctor just tell me my son is deaf?

Oh my gosh. My son is deaf. 

My mom and I drive home and Just before we get to my house I start to have a panic attack that left me lifeless on the floor of the car. How is it possible that my sweet sweet baby James can’t hear my voice? How has he not heard a single thing we’ve said to him? How has He not heard his own precious laugh? His own name? Ugh worst of all He hasn’t heard me say how much I love him? Why? Why my baby? Why can’t my baby hear me say, “I love you”?! 

Oh my heart. It feels so broken. 

After I pulled myself together, I got out of the car. I went inside and, like most mothers of this generation do, immediately went to google to do some research on hearing aids, cochlear implants, speech therapy, and sign language.
My research showed there’s a ton of options that have great success, especially for someone as young as James. This is good news. This is where I am keeping my heart right now. 

Also! To see the positive, this does explain why he hates riding in the car so much when I’m driving. The poor little guy can’t hear me when I say, “it’s okay sweetie. Mommy is just right up here”. 

In spite of this life changing news I’m trying to stay positive. Just like I always do. And the one thing that is keeping me strong is knowing one simple thing. 

James doesn’t need to hear the words “I love you” to know he is loved. He can see my love through our giggles, hugs, and gazes. 

So as we adjust to this new life change I ask for prayers for James that he will be able to respond well to the treatment the ETN doctor recommends. And for me. I ask that you help me stay positive. If any of you know someone else who has a child with permanent hearing loss I’d love to be connected. Or if you just have an encouraging word I’d really appreciate the positivity. 

Yesterday James was a happy perfect baby boy, and today, even with this news, James is a perfect happy baby boy. For that I am thankful. 


Love, Lauren & James 

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14 thoughts on “7/25/16…… The day I found out my baby is deaf

  1. Lauren I am totally deaf without my hearing aids. Sometimes it really up set me especially when all 3 of my children wear hearing aids plus 3 of my grandchildren. I have to stop and say I am glad the good Lord made me deaf instead of blind. There is so much out there now for the deaf that can help him. I am sure he will be fine and it probably will be harder for you then it is for him.. God will take care of him. Love you.

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  2. Hi Lauren!
    Holly pointed me in your direction because she knows my heart and my story. I too was born with a hearing loss (not diagnosed until I was 4!) and have so much to share with you, as well as a listening ear. I’m also a certified speech therapist and a photographer (yep! I am!) My email is jane@janeammon.com, please feel free to email me and we can chat…anytime.
    Also? Sweet Mama, it’s ok to grieve, it’s so very ok. I’ll be praying for you all.
    Jane

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  3. Lauren my heart breaks for you, but know that it’s not because of the possibility that James may have a hearing loss, but in feeling your love for him through your words. It is beyond obvious how much you love him and beyond obvious how much he loves you, his smile says it all. My high school best friend is an audiologist and would have lots to talk with you about. PM me your contact info and I will happily pass it along. Keeping you and James in my prayers.

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  4. Hey Lauren!!!! I don’t know if this will mean much coming from me, as I have not been directly impacted by hearing loss. But as a mother and a sister of someone who’s career is to teach children with hearing loss, I can tell you that your beautiful little boy will be ok!!! No…instead of ok…he will be amazing!!! And you, his amazing mother, have a big part in determining how ok he really is! James can grow up thinking he is “different” and “disabled”…or he can grow up knowing he is amazingly perfect just the way he is! The reality is we all have our “things” we need to work through when growing up!! It is our foundation that really determines how we will handle those “things”!!! Your beautiful boy is going to have an amazing life because he has an amazing momma!!! And when he stumbles…because they all do…hearing loss or not…you will be right there to lift him up and encourage him!!! You will know how to handle this…have faith in yourself…have faith in that little boy cause he is going to amaze you… And have faith in God!!! πŸ˜˜πŸ˜˜πŸ˜˜πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ» please let me know if there is anything you need from me! I could always connect you with my sister if you need advice!!

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  5. Praying for the best for James and you, but start teaching him signs now! Don’t quit talking and singing to him either! He is so sweet!

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  6. Hi Lauren, you dony know me, but we have a mutual friend, Beth Ardner. She walked my journey with our family for my son Beckett. Beckett is profoundly deaf and uses Cochlear implants, he’s 5 now and will be mainstreaming in Kindergarten when we get back home.

    Although, we haven’t met, I cried as I read your entry. It’s so similar to Beck’s beginning that it just really took me back to his beginning days. We have moved from Pennsylvania, but are in the area now visiting and I’d love for you to meet my son. Because you might not see this today, but the journey you are about to take for your son will be one that changes life in many beautiful ways. I hope we are able to meet!

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  7. Hi Lauren. You have the sweetest little guy. I so enjoy your Instagram pics, I can tell he is very much happy and so loved. As a Mother it would only be normal to be shocked and confused getting news like this. I have a friend who’s youngest son has implants. He is 7 now and thriving and did very well in first grade! If you would like to meet him at any point, let me know. Much love to you and baby James❀️ Martha Stoltzfus. ( you took our pics last year at the Columbia bridge on that very hot dayπŸ˜‰).

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  8. Hey Lauren! In September 2014, you photographed my sister Jordan’s wedding. At that time, I already had a very deep passion for photography. As part of the wedding party, I was able to watch you work throughout the day. Your dedication to producing high quality photos of the day was truly an inspiration to me. That inspiration only grew once I saw the amazing results! I’m happy to say that I shot my first wedding earlier this month and it was a success. You are the only wedding photographer I ever actually watched in action and paid attention to.

    In April 2015, my girlfriend Ashley and I learned that we were expecting. The prospect of bringing another child into the world gave me the final push of motivation needed to decide I was going to become a professional photographer, no matter what it took. Cyrus Alexander was born happy, healthy, and beautiful on the morning of December 10, 2015.

    On December 11, we were told that Cyrus had failed his hearing test. They said that this was normal, as he may still have fluid in his ears, and that he would be tested again the next day. With no family history of hearing loss, we were not overly concerned. We only began to worry when we were told the next day that he had again failed the test, and would need to come back in a few weeks to be retested. That follow up test produced the same results, and we would be referred to an audiologist. My heart began to ache.

    After further extensive testing at the audiologist, the final verdict was in – Cyrus had been born with a hearing loss. While the hearing loss was considered “moderate”, my baby boy would need hearing aids to ensure that his speech would develop properly. After a battery of tests, they were not able to find any answers as to what caused this. The mix of emotions – anger, sadness, & confusion – is indescribable, but mirrored the feelings that you are now going through. When my mother, Donna, told me about your situation this morning, I knew I had to reach out to you. It’s the least I could do for someone who, unbeknownst to you, inspired me in the world of photography.

    Cyrus is now 7 months old and has been in his hearing aids for about 2 months now. While the process of adjusting to the hearing aids has not been the easiest, Cyrus continues to be the happy, loving, silly baby boy that I always dreamed he would be. I am confident that your baby boy will persevere just the same. And you’re exactly right – he will know he is loved by every hug, kiss, and smile you give him.

    I just wanted you to know that you are not alone in this, and that there are others like me who know exactly what you’re going through right now. Just hang in there and continue being a great mother! Feel free to reach out at any time, for any reason, or with any questions.

    Sincerely,

    Justin

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    1. Your story is such an encouragement to me! Thank you so much!!! I will totally keep you on my list of people to contact with questions I may have!!
      Oh and way to rock the photography gig!! I can’t wait to check out your work!!! 😎

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  9. Hi Lauren!
    I don’t know if you remember me it’s been a very long time since we’ve had any contact. I’m Mr and Mrs Law’s granddaughter, my mom is Beverly Martin.. She was the one who showed me your blog. I’m now a Mom of 4 children (all under age 6!), but before my Mom title happened, I became an ASL interpreter! I still work part time as an interpreter, mostly within the school system or colleges, but my main job right now is Mom πŸ™‚ I wanted to write and encourage you to look into using ASL with James. I’ve personally witnessed how life changing the language is to people who have experienced any type of hearing loss. I’d love to share more with you and I’m very much an open book, please feel free to email me! I’m praying for you and James, take care and God bless πŸ™‚

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