I am so frustrated, disenchanted, sad, and downright pitiful feeling right now. Eli had his BAER (Brainstem Auditory Evoked Response) hearing test this morning. He was referred to this test after spending so many days in the NICU. Instead of doing the typical newborn screen at the hospital, they just referred him for this more extensive test at Children’s. I had confided in Chuck a few day ago that I thought Eli couldn’t hear. He suggested that I not worry about it and just wait for his hearing test. Then Cody dropped something and Eli about jumped out of his skin. I started crying tears of happiness because I thought this meant he could hear. We found out today that may not be the case. He failed 3 out of the 4 tests. Fluid was not found in his inner ear which led the audiologist to believe it is not Down syndrome related. We have another test scheduled for the beginning of December to find out the extent of his hearing loss, what is causing it, and solutions to fix/repair it (God willing!).
They say God doesn’t give us more than we can handle, but seriously? I give up. Please stop. My poor baby does not deserve to have so many strikes against him. We accept the Down syndrome. We are dealing with the heart defect and impending surgery. Now you make it so he can’t hear?! I sing to my kids every night. Eli can’t hear me. I tell them ‘I love you’ numerous times throughout the day. Eli doesn’t hear that. He can’t hear when his brother says, ‘Good morning Eli’ or when his Daddy kiddingly calls him ‘Sir Poops A Lot’. Does he live in a world of complete silence? I certainly hope not. All signs point to him having some hearing in one ear. And yes, some is better than none. I’m just not sure why this all has to happen to our sweet boy. He’s already been blessed with a few “extras” that typical children don’t struggle with. Wasn’t that enough? It’s just not fair. I’m sorry, but I’m mad. I’m mad at God. I’m mad at all the people that take for granted the fact that their own children are born perfectly healthy. I’m mad that my child has to endure more. More testing, more disability, more cards stacked against him. We have learned about Down syndrome and what we can do to set our son up for success. Now we are facing a new set of challenges. I know he’s strong. He’s a fighter. Regardless, he will endure. Me, I’m not so sure about. I’m just so sad. It’s like hearing about his Down syndrome diagnosis all over again. It’s scary. The unknown. The “what ifs?”. I’m back to having fears about the future. I just want him to be accepted. To be more alike than different. Each new challenge he’s faced with becomes another obstacle he’ll have to overcome. Now and in the future. It’s just another part of him that makes him special. But not everyone (kids especially) will see that his specialness is what makes him Eli and instead he’ll just be different.
Please keep our sweet boy in your prayers as always. I also ask that you please pray for strength for our family as we face yet another challenging diagnosis.