One Family’s Journey

From Worry to Wonder:
Taylor’s Story

 

By Amy Webb,
Treasurer, Kentucky H&V

schoolTaylor starts preschool

It is hard to believe it has been over four years since our family changed forever. As a brand new mommy, I never realized how much love you could have for another human being until that new baby was in my arms.  But when we were told of Taylor’s hearing loss, we somehow instantly loved her even more.

Our story begins when Taylor was referred on the newborn screening at the hospital. (They said “referred,” we heard “failed.”) We searched for any information we could find. As is true for most parents, there is nothing in our medical history that would cause a hearing loss. I had a normal, full-term pregnancy and Taylor was born happy and healthy. All odds seemed to be in our favor that her hearing would be just fine. However, the next available appointment for an ABR test at the hospital was six agonizing weeks away. We tried not to worry or make ourselves crazy before we knew anything for sure, but the thought consumed us for the entire six weeks. I will never forget rocking Taylor in the middle of the night when she wouldn’t stop crying. But I just kept singing and singing to try and calm her down--and then it hit me--I didn’t even know if she could hear me.

The day of Taylor’s ABR finally came.  It was the single most important, yet heart wrenching day of our lives. After the test, we were asked to have a seat and the audiologist proceeded to tell us she had difficult news. My heart sank…it just didn’t seem real or possible. Taylor was born with a moderate to severe hearing loss. I looked down into my arms at the beautiful baby girl and squeezed her tight as I started to cry. It is such a surreal feeling…to be sitting there and have someone tell you that your baby has a problem that you cannot fix. 

My husband and I struggled for weeks; lost and guilt-stricken. Through all of our tears, we just kept asking, “Why?” Did we do something wrong to cause this? Why did this happen to her?  She is just an innocent baby that will have to face this challenge her entire life--our hearts were simply broken for her. Then we began asking the most critical question of all: where do we go from here?

Our audiologist laid the foundation for us to begin Taylor’s journey.  She had stressed the importance of early detection and early intervention regarding hearing loss, so we started right in.  By the time Taylor was ten weeks old, she was wearing hearing aids, we were set up with Kentucky’s First Steps Program and we had our very first therapy session with a Teacher of the Deaf/Hard of Hearing.

For those first three years, we had the most wonderful therapists from the Heuser Hearing and Language Academy in Louisville helping us to structure and foster Taylor’s cognitive, language, and speech development. The education and guidance I received from these therapists as a parent of a hard of hearing child was invaluable. Taylor’s success so far is due in great part to the support and services received from all of the wonderful professionals in our lives during that critical developmental window. Without them, I wouldn’t understand how language develops, how listening at the circus and in restaurants, at the pool, and how outside can be very challenging for Taylor, or how to explain hearing loss to our extended family and friends (an ongoing process). I cannot thank them enough or even begin to express what an incredible impact they made. My family is forever grateful.

Since then, Taylor has continued attending weekly therapy sessions through the local school district, but spends the majority of her day as a bright, outgoing, and independent little preschooler. She is growing up way too fast and is truly an incredible little girl. She enjoys reading books together, helping in the kitchen, spending time with friends, taking gymnastics classes and most of all, she enjoys playing just about anything around the house that somehow involves her instructing mommy and daddy as to what we are to play and how exactly we are supposed to play it.

I cannot pinpoint an exact day or any one certain moment when my outlook on Taylor’s journey became so very different from where I was that day of her ABR. Looking back since the beginning, step by step and day by day our feelings over this journey have gradually changed just as Taylor has grown and changed each and every day. Over these past four years, as Taylor would reach each milestone, we would set a new developmental goal for her and then we would have the joy of watching her work so very hard and rise to the next new challenge along the way. Sure, there are still hurdles and more hurdles to come, I have no doubt. But I also have no doubt that we will work together and get through it. Our family has recently met other deaf or hard of hearing adults who have already taught us so much.

We have always and will always continue to fight for Taylor and we will do whatever we can in our power to help her succeed. Above all else, we are so very thankful that she was born to us. I think back to those moments of sadness and worry, and see now how much joy and celebration I find in getting to be Taylor’s mom that a more “typical” parent doesn’t get to experience. She has been such an incredible gift and blessing in our lives and she has truly made both my husband and I better people. She warms our hearts and our souls every single day, giving absolute purpose to everything we do. We stand today with a totally different perspective as there is nothing left of that sadness, guilt, and feelings of loss that we once carried…only hope, determination, strength and love for the rest of this journey to come.

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