Yesterday began like any other typical day in which you have to be somewhere at a specific time, however I had no idea what sort of turn yesterday would take and how it would change all of our lives forever.
Yesterday was Harper’s ABR Hearing Test, she failed her newborn hearing screening while she was in the hospital not once but twice and she failed a second set of tests a couple of weeks after that. When she failed the second round of testing at 3 weeks old they decided to schedule an ABR for May 10th to give her time to “get a little bigger” if you will.
Harper during ABR 5/10/16
She was 5 lbs 12 oz when she was born and her ears were so small they thought re-testing closer to the 2 month mark would give us a better reading….. what it gave us was a result that no parent is prepared for, no parent wants to hear…. Harper can’t hear, her results read as complete loss and my world turned upside down.
As I sat and stared at the Audiologist part of me thought it was a joke or that I didn’t hear her correctly. Another part of me became very angry/hurt/devastated/confused with tears streaming down my face and in between sobs I asked her if my daughter would ever hear me or her Dad or her Brother and her response was “I don’t know for sure but most likely not.”
I wanted to punch her. I wanted to make her re-test Harper right then after the hour we just spent sitting in silence watching the screen with all of its waves and numbers not knowing that what it was telling us was that Harper wasn’t responding. I explained that maybe it was because she was still so small, that she was sleeping during the test and maybe she is like my husband and doesn’t hear ANYTHING while she is asleep. Ryan (my hubby) literally sleeps like the dead. I can vacuum next to him and nothing, lay Harper down screaming next to him and nothing, yell or scream his name from across the house and nothing… you have to physically shake him to wake him up so maybe Harper is like him when she sleeps….
The Audiologist just stared at me and began rattling off the next steps we needed to take, what appointments need to be made and how Harper would be fitted for hearing aides within the next few weeks…. HEARING AIDES. I completely lost it then.
This tiny, innocent, sweet girl who just a couple of weeks ago was diagnosed with Allergic Colitis and has been suffering with a tummy, colon, and esphogaus that have been shredded to bits due to the fact that she was born with a Cow’s Milk Allergy. Translation Harper is allergic to every formula on the market due to a cow’s milk allergy and has to drink Nutramigen which is Hypoallergenic and also $40 A CAN and before you suggest it, and I know you are just trying to help, no our insurance WON’T cover the formula – I have already tried. My poor girl suffered the first 5 weeks of her life with the Allergic Colitis and 2 weeks later she is still trying to adjust and now she has even bigger challenges ahead.
The rest of the appointment was a blur. I spent the entire rest of the day sobbing on the couch with Harper right next to me. I just kept Googling every question that came to mind and while some of it helped some of it broke my heart. For instance babies who have a total hearing loss still coo, babble, cry etc like babies who can hear perfectly. It was answers like that blew holes in every theory I had that Harper can in fact hear. Every time I look at her sweet face I lose it. I had no motivation to do anything, and I still don’t today. I didn’t make dinner – I have no idea if anyone aside from Harper even ate. I need to go grocery shopping but my eyes are literally so swollen from crying they are almost swollen shut, besides I have no desire to cook or to clean or to fold the laundry…. if you know me then you know that’s not me. I am sinking into a depression and I have to fight to get out because Harper is going to need me to fight for her like I do Zac, but right now – I can’t. All I can think about is how she can’t hear me whisper soothing words as she cries, she can’t hear us laugh and include her in little “inside family jokes”, she can’t hear me say I love you as I stroke her face while she gazes up at me with those big blue eyes that have the most beautiful twinkle to them, she might not ever hear music or dance or sing or hear anything…..she might live in silence and the very thought makes me physically ill.
This is going to sound awful but hear me out, we didn’t just have Harper to “have another baby” we had her for Zachary. We wanted to make sure Zac would have someone to care for him, help him, be there for him once Ryan and I are gone. We don’t know how Zac will be when he is older, right now he is fantastic! He is flourishing and progressing so far past any expectations we had and we couldn’t be more proud, however that doesn’t mean that will always be the case and in having a sibling I wouldn’t worry as much because she would KNOW what he needed, she would KNOW how to “handle” him or a situation, she would KNOW what Mom would do….. but now that has all changed.
Just like Zac they can’t tell us what Harper’s future holds. They can’t tell us if she will or won’t speak, we have to wait and see. They can’t tell us if Hearing Aides will allow her to hear, we have to wait and see. They can’t tell us if Cochlear Implants are the route we will take, we have to wait and see. If you know me then you know I don’t do “wait and see” very well.
As I sit here while Harper naps and sob all over my keyboard writing this I have no idea what will happen next or which way to turn… I’m numb. I keep thinking about the instances she has in fact responded to sound and pray that there is some glimmer of hope, that maybe it WILL turn out to be some hearing loss but not total, that maybe it’s worse in one ear versus the other…. maybe it’s wishful thinking or denial or whatever but it helps for now.
I do want to take a minute to say Thank You to all of you who messaged, text, or called yesterday to see how her tests turned out, I’m sorry I didn’t respond but I didn’t want to explain everything over and over and over again… I can’t right now. Oh and to the girl in the black Hyundai Sonata in front of me at Dunkin Donuts on Atwood Ave in Cranston this morning, THANK YOU for paying for my coffee. I’m not sure if you could hear or see me sobbing, maybe both, but I don’t know you and you don’t know me or what I’m struggling with so thank you, thank you for being kind.
And thank you to all of you for always allowing this to be an open forum, a place of release, an out… I’m going to need it now more than ever.
And to Harper, in case you read this one day when blogging seems so lame and you’re reading it on some crazy piece of technology that hasn’t even been created yet…. I LOVE YOU and I’m proud to be your Mama and I will fight for you until my last breath. You’ve already shown that you’re strong and I promise you will have anything and everything you need to thrive, I will make it happen even if I have to sell my kidneys – you’re my little Wonder Woman, now and always.
Healthy Wishes, T
