Sometimes I am really angry. I am angry that my kids have hearing loss. Angry that my kids are neurodiverse. Mostly I am angry at myself, for being angry. I think so often as mothers we are taught that we should feel gratitude all the time. When your child is crying in line at a checkout, some well-meaning person will remind you that these days go so fast. When you find out that your child has any type of disability you are reminded that at least you have a child, My favorite one is the advice: it could be worse.
#NotFeelingBlessed
I find it strange. Why should I find comfort in thinking about how glad I am my kid isn’t as bad as yours. How glad I am I don’t have to walk through the imagined struggles of the mother dealing with horrors I can’t imagine. Thinking of a baby who came 3 months early should make me feel gratitude. Personally, there is nothing worse you could say to me. We all have struggles. We all deal with them differently. My struggles are not worse than yours or better. They are different. I think we are quick to share these overused phrases when we are uncomfortable. When we do not know how to share our concerns. We use cliches to offer comfort.
Anecdotes are another favorite of mine. The number of people who told me their uncle had a friend who had a cousin who has hearing loss and their totally fine. I believe that the only thing that really makes it better is honesty. There are good and bad outcomes for any diagnosis and no one has the same story.
Finding your gratitude
I was blessed to get to meet several other moms after Roses’s birth. Their daughters all had hearing loss as well. They told me it would be alright. None of the parents sugar-coated the struggle. When other people were excited their child was learning to crawl, we would celebrate Roses leaving her hearing aid in for an hour.
We would discuss and compare audiograms. Grateful when the hearing loss remained the same. Offering a shoulder to lean on when it was getting worse.
It is hard to be angry when you have a child diagnosed with a disability. You know other people will tell you it is going to be okay. It is important to be a good role model for your friends. Your child needs you to feel okay about the diagnosis.
Putting on a good face
I found this particularly difficult after Dino was born. By that time Roses had a fabulous grasp on language at 3. We had to carefully watch how we said things. She was so excited that Dino also needed hearing aids. Poor Rainbow was mad she didn’t. This meant I usually cried and screamed alone in my car. I didn’t want any of the kids to internalize my anger and sadness. Their differences weren’t something they should be ashamed of or that they did wrong.
It is still important to me to help them find the silver lining while we acknowledge that we wish things were different. To do this I needed to let my anger come out.
It still does sometimes. Talking with the insurance company that needs proof my kids still have hearing loss. Or just doesn’t think hearing loss is a medical concern, it’s more cosmetic. Every year when my kids have a new teacher and I have to advocate, again. Going through the same talk so that they aren’t ostracized or forgotten in the classroom. Getting the constant reminder to look at the cup as half full.
Photo by Simran Sood on Unsplash
Parents, especially moms need to be allowed to feel their anger.
I am giving you permission
You do not need to feel guilty or ashamed. Being angry or sad that your child is different is not saying you don’t want your child. Or you think they aren’t good enough.
As parents we want our children to have full meaningful lives. We think from our own experiences that if they are “normal” it will be easier for them. This might be true. But remember, being normal doesn’t allow your child the same opportunities for growth.
My kids are extremely empathetic. They want to help new kids. Or sometimes kids who are different feel included at school. My kids are role models. Standing up for other people when they are being bullied. Because we have worked so hard to teach them that their differences do not make them any less than someone else.
Photo by Annie Spratt on Unsplash
On days when things are going well, I can almost feel grateful for the experiences my kids’ differences have given our family. We have an amazing support network that we wouldn’t otherwise. The multitude of professionals and parents we have met on this journey. We also have all learned how to be better people.
It will get better
Personally, I have learned how strong I really can be. That I am not the quitter I always told myself I was. I am pragmatic and reasonable. I will fight when it is what I need to do.
Underneath everything I don’t think my sadness or anger will ever go away. I do know being honest about my feelings in an appropriate manner has helped me so much. I have seen it help Roses too. Once in 4th grade, she came to me crying because she hated hearing loss. I know she expected me to tell her it wasn’t that bad. I told her I hated it too. Sometimes I was really angry at God.
She was so grateful that I acknowledge the validity of her feelings. We didn’t sit in her anger or mine. Instead, I reminded her of the good that has come. Ultimately though I did not tell her to ignore her own anger.