A few weekends ago we celebrated Sonya’s first birthday! In preparation for the big day, I assembled a photo album highlighting my favorite photos over the past year. As I reviewed Sonya’s amazing growth and development, I couldn’t help but notice the dark circles that appeared under Yan and my eyes.
Sonya has been alive an entire year and we have not slept through the night since.
We used to put Sonya down wearing her cochlear implants. She is very connected to the hearing world, and would get upset when suddenly her sound was disrupted. But that decision reversed itself when I recently came into her room only to find her SUCKING on the battery! She had figured out how to remove it from the processor. I am trying not to imagine a scenario in which she swallowed it.
I needed a solution. I decided that maybe she would be comforted by something to look at. I decided the perfect spot would be above her crib. I purchased adorable animal “wall trophies” from Hannah Andersson. We bought a unicorn, bunny, swan, zebra, elephant, sheep, reindeer and fox (when you are sleep deprived, you have trouble making decisions I have learned).
We hung them up as soon as we could. I loved the way they looked. But that night, Sonya freaked out. Perhaps it was the shadows of the animals at night hovering above her. Maybe she wondered where the rest of their bodies had gone…It was the worst night sleep in a long while.
So (thanks to a wonderful suggestion by our speech therapist) I purchased the Baby Einstein Sea Dreams Soother. I am telling you – this product is amazing. As soon as I put her down in the crib, Sonya points at the aquarium, asking for me to turn it on for her. She smiles and laughs as soon as she sees the lights turn on and fish, crab, octopus and sea turtle begin to dance. She then turns to her side to watch the soft lights that look like ocean waves on her mattress. The combination of lights and movement seems to be enough stimulation to satisfy her. She doesn’t seem to miss not hearing.
While great, it’s not a perfect solution. Sonya has learned how to adjust the settings which are on the top of the machine, and she uses it to wake us. In the middle of the night, when Sonya wakes up, she turns the machine on to full volume. I hear Chopin’s second Nocturne and then the sound of Sonya, singing “mama! mama!”
Now it is a beautiful sound to hear my child – who was born with profound hearing loss – to say my name, but less so when I hear it every three hours until I get her, every single night.
I know I am not the only parent in the world to suffer from sleep deprivation. I also realize we can do something about it – a.k.a. sleep training. Which we have tried – and failed at – numerous times in the past. And I know eventually we will stick to it, and it will be better.
Until then, look forward to reading any comments or suggestions you may have at midnight., 3 a.m. and probably around 6 a.m. tomorrow morning 🙂
“She is so adorable!” Our neighbor exclaimed as we held open Sonya’s trick-or-treat bag. “What is she? Some sort of robot?”
“She is a fish,” I replied.
“Well I just love the blinking lights,” she said pointing to Sonya’s processors. “A unique fish you are!”
“Yes she is!” I laughed.
Deciding when to explain to people that Sonya is wearing cochlear implants has never been easy for me. Over the summer, in Central Park’s Great Lawn, a young girl sitting nearby on a blanket pointed to us and sneered, “What are those ugly black things on that baby’s head?” Her dad quickly told her to “shut it.” I didn’t respond. Instead, I packed up Sonya’s toys, rolled up our blanket and left. I was too upset. My biggest fear was that Sonya somehow sensed my emotion and thinks that it was because I was ashamed, which is not the case. I just didn’t know what to say.
From that moment on, I knew I needed to come up with some sort of response. I decided to ask other parents in my situation, and here are their suggestions.
As soon as they can understand, teach your child the language they need about themselves and in a loving way. For example, I should plan to use the word “deaf” and “cochlear implants” around Sonya – and explain that they are just a part of who she is. Explain to Sonya that she is different, but that we all have differences.
Teach your child to use these words as a defense against ignorance. Unfortunately, what the girl in Central Park said will not be the last derogatory remark Sonya will hear in her lifetime. But if I do my job and ensure she is as well-adjusted as possible, when someone says to Sonya on the playground “You’re deaf!” she will hopefully respond with something like, “Yes – I sure am. I use my CIs to hear just like you use your glasses to see.” Ultimately, I hope Sonya is able to teach people to open their eyes and to learn.
Speak up, but not in a defensive way. This past weekend, Sonya and I visited a bookstore where I overheard a child ask her mom what Sonya had on her head. “Oh, I am sure that is helping the baby in some way,” her mom responded. I decided that this time, I would say something. I turned around and asked nicely, “Oh, do you have a question about what she is wearing? I know it is different from what you have seen before, right? These help my baby to hear.” I then removed one device and let the child look at it more closely. The little girl was interested – as was her mother. I realize that very few people in the world have CIs – they are not something that people typically encounter.
In some instances, it just makes sense to say nothing. I have noticed that far more often than not, people are too polite to say anything. I never force the conversation. I only bring it up when it emerges organically.
Find humor, when possible. A question asked in a mean tone doesn’t always warrant a serious response. One parent at Sonya’s speech therapy encountered a rude person who one morning on the elevator asked curtly what those things were on her child’s head. Something about the person’s tone and the fact that it was just too early in the morning to dive into a lesson about the amazing benefits of cochlear implant technology led this parent to simply respond with, “Oh those? they are headphones. She just loves to listen to Howard Stern in the morning.” I love this.
I would love to hear other ideas for responses as well. Do let me know if you have any suggestions!