By Lisa Cable
I am the oldest child in my family and a classic “Type A” personality. As such, I LOVE to be in control. I want to know what’s going to be happening and actively plan for each and every event so that there are no surprises. I like lists, spreadsheets, calendars and anything that helps me to plan and keep track of all the little details. But as every parent knows, having children can throw even the best planner for a loop.
We are lucky to have two fantastic, spirited and opinionated children. Our son is 12 (almost a teenager!) and our daughter is 10. While our son has typical hearing, our daughter, Lily was born hard of hearing. When she was first identified, at 8 weeks old, as being hard of hearing it was a shock. However, I quickly shifted to figuring out what we needed to do for her and dove in head-first with early intervention, audiology appointments and meeting other families. It was certainly a shift from how it was with my son during his first year of life, but one that I was happy to make for the sake of my daughter.
By the time Lily was 18 months old I felt like I had a handle on how things were going. We’d settled into a routine of appointments, baby groups, intervention services and such. We’d worked hard to learn as much as we could so that we could make informed choices; we reached out to other families and deaf/hard of hearing role models to learn from their experiences. Lily wore tiny little hearing aids and was progressing well – we were happy.
Just before her second birthday we learned that Lily had Enlarged Vestibular Aqueduct (EVA) Syndrome and that it was very possible this could result in a progressive hearing loss. Within two months she experienced her first “drop” in hearing, sending us scrambling to figure out what to do. Managing a feisty two-year old with fluctuating hearing levels was something we were not prepared for. It was the first time I felt like I didn’t know what to do or how to manage the rapid changes that were besetting themselves upon my tiny daughter.
After three more years of progressive hearing loss, switching hearing aids to keep up with the changes, two cochlear implant surgeries and simultaneously navigating two different preschool programs, both Lily and I came out the other side different people. She was resilient, confident and ready to take on the world. I had learned the hard lesson that life cannot be controlled and planned for the way I always want it to be. I needed to be flexible – not a pushover, but someone who could accept what comes and figure out ways to make the best of each day and each situation.
Once Lily began Kindergarten (for which I’d planned extensively!) I figured things would be easier. She was thriving with her cochlear implants, in mainstream school with her brother and her friends from the neighbourhood while also having a wonderful circle of deaf and hard of hearing friends to connect with.
However, just when we think that we’ve got it all figured out, life has a way of keeping us on our toes. Navigating elementary school with Lily has been a constant lesson for all of us in how to be flexible. Equipment breaks down or doesn’t work, there are substitute teachers who aren’t aware of how to best communicate with her, challenges with noisy school assemblies or playing outside during lunchtime – to name a few. Just when we figure out how to deal with one challenge another one pops up.
What I’ve learned, and hopefully helped my children to learn, is that the challenges life presents us with don’t need to be seen as negatives. They can be opportunities to learn about ourselves, to learn from others, to try new things and to make mistakes. While there are days that I would love for things to just go exactly as I have planned for once, I wouldn’t trade our marvelous, sometimes crazy, life for anything.