Do you understand the words that are coming out of my mouth?

Today at work, I got a call from Grammy who was watching Pooters in the hospital. Katie-Anne was having a major meltdown. A major one. They had come up to get her for a hearing test and she was upset. Mostly it was because she didn’t understand where she was going or why I think. I had Grammy FaceTime with her and this is what I told her. I told her that she was going to have a test to make sure she could hear Mom’s music really well so that we could sing together in the car. I told her that it would be okay but Mommy wanted to make sure that her ears were working well enough so we could keep singing together. She calmed down after a bit and then got upset again because they had her in a hospital gown and not her real clothes. Easily fixed and she was on her way. Dr. Watt and I talked about getting all her tests done, or as much as we could, while she was in the hospital for New York. They want all new tests even though we just had them done a few weeks ago plus a few like an echo, hearing test, and a few other things we don’t normally do. No biggie right?

Wrong. I got a call at work from the audiologist that did her test and my sweet girl has hearing loss. She has high frequency hearing loss and she is going to need hearing aids. To say I was shocked is an understatement to say the least. Katie-Anne shows zero signs of hearing loss. She is a great communicator, and very much advanced for 4 years old. The audiologist said that she has trouble hearing certain high frequency sounds life “f”, “s”, and “th” sounds. This is crazy to me because she has no problem saying them. In fact the only sound she has a little trouble with is her “l” sounds. You know, like the word yellow. It comes out sounding like “yeyyow”. Still nothing that would ever cause me to think she was hearing impaired. I started asking a million questions which the lady tried to answer, but I got the feeling (after repeatedly telling me that at her next appointment she would have a specialist there to answer any questions that I had) that my questions were a little too much. Not in a nasty way, but I got the feeling that she was trying to get off the phone with me.

My first reaction was anger. What the hell else does my daughter have to go through? She’s missing ribs for God’s sake. Now moderate hearing loss. Then I felt guilty. I still have her. A couple of hearing aids is a small price to pay for still having her here with us. But damn it man… I know it could be so much worse, but it still hurts you know? Someone telling you that your daughter is hearing impaired is such a blow. It is irreversible. The “platin” chemo drugs are to blame. Cisplatin and Carboplatin to be exact. I mean, what else does she have to deal with? The same medicines that are keeping her from dying are taking little pieces away from her at a time. Big pieces really if I really think about it.

Now every time I talk to her, I listen for those consonants. How she is saying words. I want to whisper to test her hearing. Could they be wrong? I want them to be wrong. I need them to be wrong, but I know they aren’t. I’m making her repeat words like “fussy pants” back to me. Fussy pants for sobbing out loud.

She will already have so much to overcome in her life and now hearing loss. It just seems so unfair.

I reached out to Neuroblastoma groups on Facebook to see if anyone could share their story with me about the same kind of hearing loss. It really doesn’t seem to be that bad. The hearing aids they make these days have bluetooth…bluetooth. The kids can answer their phones or stream music through their hearing aids. They can personalize them and make them “fun” looking. But I don’t want “fun” looking. I want her to be able to be pushed into a pool as a 16 year old by her friends without worrying about taking her hearing aids out. I want her to be able to tuck her hair behind her ears and not get made fun of by cruel children. I want her to have a normal life. I feel so selfish in my anger, my resentment. I still have her.

The thing is… I will make it fun for her. I will teach her to not be ashamed. I will teach her that it’s just a part of who she is and she is beautiful. I will make sure she gets preferential seating at school. I will get her whatever kind of therapy she needs to be as successful as she can. I will do everything I can to make this not a bad thing. But not tonight. Tonight I am angry. Tonight I am resentful.

Also, lets talk about cost. From my research, depending on what kind she needs, it could be anywhere from $1000 to $3200 per ear. And from what I understand, most insurance don’t cover them. The best that I see is some will cover 85% of just one. She needs them in both ears.  This is so frustrating. How on earth are people suppose to do this? How are any normal families suppose to deal with these cost, coming out of nowhere? It’s not enough that there are medicines, treatments, travel, hospital stays, and now there are hearing aids. I’m not saying it can’t be done. I have an amazing tribe, and I will do what I have to do to get her her hearing aids, but all I can think about is families that don’t have their own tribes. What about these families?  We don’t qualify for any type of assistance because our income is so high. So high. Really? Because we are barely making it. I can’t even think of families that don’t have what we do have, how they can even make it day to day.

Tomorrow I will be fine, but tonight I am just angry. Not at her, not at us, I’m really not sure at what. Cancer I guess. I’m mad at cancer. Neuroblastoma Stage IV High Risk Non Amplified f’ing cancer. That’s what I’m mad at. Also my back. I’m pissed off that my back still hurts. I’m mad that it feels like a needle is being shoved into my butt. I’m mad at the stupid contractors at work that treat me like a stupid woman that doesn’t know the difference between a scissor lift and a fork lift. I’m mad that I love cheese and meat and fattening stuff and I’ve gained a millions pounds. I’m mad.

Tomorrow I won’t be though. Tomorrow I will go to the chiropractor again. I will go to work with my head high and my voice strong. I will FaceTime Pooters and show her the fidget spinners that I have for her (that she says perfectly btw). Tomorrow I will begin to research costs and types of hearing aids. Tomorrow I will hold her and whisper how beautiful and smart and amazing she is, and she will hear me because I know she still can. I still have her…and that’s all that truly matters. It’s all that matters when cancer happens.

4 Replies to “Do you understand the words that are coming out of my mouth?”

  1. Be angry Mama, you are allowed. Hurt because that is what a mama can feel. But today, know we will help, we will find a way to surround her with every single
    Thing she needs. Love you


  2. Let it out girl!!!! Scream yell git a pillow….let it out! What does that mean? It means you are being real, healthy and it is ok. Mad as hell is good!!!! Starting each day new is good!! No life sucks and is so unfair! Look at your past….it prepared you for your now! Your past has made you to be everything your daughter needs you to be! We are all here for you. We can’t take the crap away but we can hold you up !


  3. I’m so sorry you’re going through this. You’re right to be angry but you also have the business sense to work it out and move on to get done what has to be done. Hopefully your tribe can have a huge fundraiser of some kind.
    Praying for you.


  4. Let me say this, I’m so sorry that you’re having to go through all this, I lost my son, it was sudden and swift. I don’t know how you find the strength to get up every morning. I hope you find comfort in my words, try to remember as much as you love your little poster our GOD loves her and you more. Tomorrow would have been my sons 50th birthday. He was 24 when he died so he’s been gone from me longer than God let me keep him, but know this He our FATHER in Heaven is who has kept me going all these years. Trust Him and enjoy every day your sweet baby has with you!


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