Another day, another disheartening diagnosis

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.

4 comments on “Another day, another disheartening diagnosis

  1. I have a 80% loss of hearing in my left ear. Numerous infections and even more surgeries. My ear is basically a empty cavity. A hearing aid works in conjunction with inner ear. So Im shit outta luck. I depend alot on lips, facial expressions, eyes, etc. It drives me crazy when people mumble or put their hand in mouth area while talking.
    I’ve adjusted.The only thing that I wanted and wasnt allowed, to serve our country. Oh well.
    I thought, I would share a story with you. I believe if you google it, you can see the strides this young lady and her family have made.
    The young girl named Bobbi, was born with no ears. She was fitted with a apparatis that she wore like a headband but even with that, she missed alot. Finally, a Dr. said he could make her a functioning ear. The cost was outrageous. Thus, Bobbi’s Build an Ear Foundation came to be.At first it was local people helping a local child. Bobbi has since gotten her ear. The foundation grew so big that it continues to help children from all over. Her Mother didnt, wouldnt, give up. Was she overwhelmed at times, you bet. For Bobbi she refused to give up. The community came together for Bobbi, soon it went viral, and the Foundation continues to grow and help children from all over.
    Don’t give up, Mel. I understand your anger and doubt. I know its hard to believe right now, but, HE has a plan. Eli will face many challenges, but he has a Mom, Dad and big brother who love him unconditionally,He, has numerous people praying for him, his parents, and big brother. As the challenges arise, there will be support from other parents that have or are going through the same issues. Rely on them. Rely on all of the family and friends that are in your corner.
    Dont throw in the towel just yet. I love you, Chuck, Cody and of course Little Eli has a special place in my heart. Keep the Faith.

  2. The future scared me the most initially, but 14 months into this the future it isn’t nearly as frightening. The good days will soon outnumber the bad ones. If you haven’t already, the Down Syndrome group on is a great resource. Keeping all of you in my prayers.

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