I sat alone in the family waiting room while our son was in the operating room and I cried. I tried to hold it in, I didn’t want the other families there to see me break down. I texted my husband, I was afraid to call because I knew my voice would break and the tears would fall.
I didn’t expect this. The audiologist showed me her results of the ABR (auditory brainstem response) with a look of concern and empathy. His hearing loss nearly doubled and is now considered “severe” in many of the tones. She told me that during the test she called our son’s audiologist to let her know that things weren’t looking good; everyone was a little bewildered. Severe loss.
She walked away and I did my best not to cry. But as the time went on I couldn’t hold it in. I used up the tiny box of scratchy tissues on the table next to me and let the tears fall. My heart ached for our son. And it wasn’t just the hearing loss. It was all of it. All of the “loss” in his life was hitting me all at once. Hasn’t he had enough loss in his life? Hasn’t he had to give up enough? I have spent innumerable hours grieving over the life he has “lost” due to CDG. Don’t get me wrong, his life is full of so much joy and triumph, but at this moment all I was feeling was deep grief. Grieving the life we so wanted for our darling boy.
I sat there wondering if he could potentially lose all of his hearing. I wondered if we would ever hear his sweet voice. I thought about the future and couldn’t help but grieve. I am so tired of hearing the words “loss” and “severe” when it comes to our little boy. Man, he works SO hard. We work so hard, and yet there are days when that doesn’t mater. His body has a mind of it’s own and there are countless things completely out of our control. I know he’s severely affected by his genetic condition, but it never gets easier hearing it. This day hit me like walking straight into a door you think is open, only to get slammed back on your butt.
I was sitting on the floor, defeated.
But you know what? There’s only one choice after that happens.
You get up.
You wipe your tears, dust yourself off, and open the door.
Or you kick the door in. Whatever works 😉
I know that along this journey we’ll continually walk into doors, but I promise that I will always get up. I will wipe my tears, put my chin up, and kick the door wide open. For him. Forever for him.