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What is the H-word you might be wondering?
When my children were little we had a list of bad words that were not the typical ones people thought of, including the H-word. Hate. We tried to teach them that they can dislike things, but hate is too strong of a word to use in their lives.
Well, right now I need to write about my hate.
I hate my children’s hearing loss.
It is okay to hate it.
I do try to look at the bright side as a rule of life. Those are thoughts for another time. This is not that place.
I repeat I hate my children’s hearing loss.
If I could I would change it. I would make them whole. Whole the way the rest of the world defines it.
It is okay to hate your child’s disability.
I am giving you permission. I know you don’t think I have any right to do that. You are probably correct, but that is not going to stop me.
Complicated, not worse
It took me 6 years before I said these words out loud. I finally felt free of the pain I was swallowing down.
Don’t get me wrong, I love my children. But I believe that it is okay to hate something that makes their life more complicated. Notice what I did there? I said complicated, not worse because it is true. My belief is that their hearing loss has not made their lives worse.
If I am honest with myself I don’t think it has made my life worse either. It has added some challenges, but it has also given us unique opportunities. There I go breaking that positive outlook rule.
I think I have cried more over my children’s diagnosis than anything else in my life. The heart-wrenching pain of finding out my daughter was disabled. The unknown, wondering how we would ever relate to music with Roses and her hearing through a microphone. Wondering if she could go to school where we wanted. A please with her peers and still be able to succeed.
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I hate my daughter’s hearing loss because it ruined so much of her early months with me. People who knew she had hearing loss only ever asked about that. Not about her developmental milestones. They asked if it was better. When people didn’t know about her hearing loss, it was still the first thing I thought of. At work, my mind would immediately think of her failed newborn screening when customers asked about my daughter.
Accept the hate to see the miracles
Life was full of worry. I panicked when I didn’t think she was talking soon enough. When she wasn’t making certain sounds. I fixated on the things I thought were going wrong with her.
I ignored all of her miracles. Rolling over, sitting up, crawling, walking. I could only focus on whether she noticed a sound. Did she turn to look at a noise? Was she babbling correctly? What decibel level was our new dishwasher? Was our aquarium too loud for an optimal listening environment? I stopped listening to the radio when she was in the car. Her environment was silent, perfect at all times for her DHH needs.
I was a mess and it was all because of this stupid hearing loss.
And yet it felt like a betrayal to admit that I hated my daughter’s hearing loss. A part of me thought that it meant I hated her.
Positivity isn’t always the answer
When Dino failed his newborn screening it felt inevitable. My composure was intact. I knew what to do. I called my husband and let him know. Next, I texted our first DHH teacher and my good friend for support. The next morning I was on the phone with our audiologist getting him in for testing and hearing aid fittings. I had no doubt that he also would need them.
I couldn’t be sad at all. Roses was almost 4 and we had taught her that her hearing loss was no big deal. No matter how much I wanted her to believe it I never could. In some ways, it was so much worse with Dino’s diagnosis. Even now I find I cry more writing about him than I do Roses.
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I hated his hearing loss because everyone insisted it would be easier. We had already been through this. I knew what to do. We already knew it wasn’t a big deal and Dino would be fine. And I had to fake that I agreed.
The second time isn’t always the charm
Well, I didn’t. It was just as horrible the second time. I hate his hearing loss just as much. It was easier in some ways, but so much worse in others. I couldn’t mourn for what might have been. His sister was so excited that he was getting hearing aids too. How could I say I hate his diagnosis. Everybody expected me to be fine and I tried to be. I wasn’t. I mourned that I hadn’t given my husband a perfect son.
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I hate their hearing loss and I am so glad I had the courage to finally say it out loud. I remember the first time that I did. It was an impulse. I had been thinking about it more as Roses entered kindergarten. How annoying it all was, the meetings, the IEPS, the hearing aids, and the accommodations. I wanted the hardest decision to be which backpack she needed. Not could this school support her special needs?
Honesty with love helps everyone
A few months after school started I sat in a room of parents. We all had DHH children and we were talking about transitions. The transition from birth to three, three to five, and then school age. Our kids were in another room socializing with each other. The parents there all had younger children. They were asking me more about Roses when she was little. At this point, you would never guess she had hearing loss. She spoke clearly, was outgoing, and was happy. All things I wouldn’t have thought were possible when she was diagnosed in the hospital.
I started with my positive spin. I talked about how wonderful the extra help was. How she was able to interact with hearing peers. We were able to mainstream her. I was telling the truth, there were amazing positives. But I felt something was missing. It just tumbled out, “I hate her hearing loss.” For a moment the room was silent. I had made a serious confession and they all bore witness.
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Everyone was quiet and then the walls came down. My confession allowed us to have a more realistic dialogue. We could commiserate about the annoyances. The strange things people said to us. The plethora of specialist and doctor appointments. I hope my confession was able to help alleviate some of their parental guilt. At least a little.
I want a full glass
Society tells us we should feel guilty if we don’t see the glass as half full. I want a full glass though. It doesn’t matter if it is half empty or half full, I want it to be full. If we don’t put a positive spin on our children’s disabilities we are monsters. I believe that this doesn’t help. If we lie about our feelings we do a disservice to ourselves and our children.
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It is important to be positive, don’t get me wrong. But it is also important to acknowledge our feelings.
Roses told me this year that she hates her hearing aids. I saw her get ready for my positive speech and I couldn’t do it this time. Instead, I looked her straight in the eye and said, “I hate them more.”
We couldn’t stop laughing.
Sometimes a little hate needs to be expressed to find the love.
