Our eldest daughter Monrovia, who is now six and a half years old, was born profoundly deaf. We first heard the words “profound hearing loss” when she was three weeks old, after failing multiple hearing tests. At the time I felt pretty overwhelmed by first-time parenthood, so the idea of parenting a newborn with special needs felt quite heavy and scary.

Here’s an excerpt from an email I wrote to friends after the appointment in which an audiologist told us she was deaf:  We chose the name Monrovia for a very specific reason, and now it seems more fitting than we could have predicted. When I spent time in West Africa, part of the time was in Monrovia, the capital city of Liberia, which had been devastated because of the awful Liberian civil war. My Liberian friends would always describe how beautiful the city had once been, and would speak with hope of what the city could become, even though it literally was falling apart. That image, of having great hope despite the surrounding circumstances, resonated with Matt and me. We wanted our child to be a person of hope and beauty even when that wasn’t what life or the world looked like at the moment. And here we are. In a place that seems so dark at the moment.

We hold this grief with the knowledge that even with M’s hearing loss we are so blessed, gifted, and privileged with a delightful and perfect child. At the same time it does feel that our immediate little world is crumbling, and we bear the weight of so much sadness right now. It sort of feels like we got robbed of this joyful beginning part of her life. Instead of just enjoying our new daughter, we are scheduling doctor’s appointments, handling insurance and specialists, researching hearing loss and learning an entire new glossary of terms. Most of all, we are incredibly broken feeling. So at the moment we are processing this, and coming to grips with a new reality for our lives.”

Six years later I can’t imagine any other narrative for Monrovia. Deafness, the word that I was initially unable to say without crying, quickly became our family’s normal. We deliberated very carefully when Monrovia was an infant and decided to pursue cochlear implants for her in order to give her access to sound. Implants do not fix deafness (nor was that our intention), but they mimic the way a typical hearing person’s hair cells work and enable some deaf people to develop spoken language. Monrovia had surgery when she was 9 months old; her implants were activated and she heard her first sound a month later! Having a deaf daughter has been one of the richest and most amazing gifts of my life, and it has shaped so much of our family’s life together.

I wouldn’t change either Monrovia’s deafness or our decision to get her cochlear implants, but there are aspects of having a deaf child that I wish others would know:

* Our complex feelings about her deafness don’t go away. We celebrate her deafness as much as we can and are very intentional about speaking to her deaf identity, but we also grieve what she misses out on as a deaf child living in a hearing world. This morning I stayed after school to watch how she was doing in her class. Within minutes I saw how she lagged behind her classmates in following verbal directions, and how she couldn’t simultaneously listen to the teacher and work like her hearing peers. Yesterday a kid called her name from 5 feet away and she didn’t hear it so the child ran off to play with other friends without her. In the morning the school bell rings at a tone that blends in with the sounds of a busy playground; as all the kids line up she is left alone playing until she looks up and sees an empty play structure. In a noisy restaurant she is completely lost in conversations. If someone speaks quickly she is still processing what they said when they move on to a new topic. Those complex feelings don’t go away, and so I wish the support wouldn’t go away either. Most friends of mine who have a deaf child are continually dealing with scenarios like this. It is amazing (and rare) to have a friend ask, “How are things going with Monrovia? Have you had any hard stuff with her deafness lately?”

*Our daughter is thriving. We are so grateful! She is in a mainstream class, on grade level, and can listen and speak spoken language even though she is deaf. But she works really, really hard. All day, every day! To keep up, to stay on track, to hear what you are saying, to focus, to process, to learn what new sounds are, to absorb new vocabulary. Unlike a typical hearing person, who can passively hear, assimilate and filter sounds, she must actively work at each of those things. So when you say, “I always forget she’s deaf!” I understand. But please know that we never forget; there are hidden parts of deaf life we are dealing with all the time: charging batteries, waterproofing her implants, finding subtitles for the movie so she can follow along, troubleshooting classroom issues (of which there are so many!)…We think about how to handle swim parties or sleepovers or talking on the phone to relatives…We field questions like, “Why does no one else at my school have implants but me?” or “Will I still have to wear implants when I grow up?” One of the biggest issues for Monrovia is that because she presents as a hearing child, it can be hard to convince people that she really still needs support as a deaf child. Yet she does.

*Please don’t say, “I wish I could turn off all the sound and just have silence like she can with her implants. She’s so lucky!” or “I think she kind of likes that she can’t hear everything. I know I would.” Really?! I can’t tell you how often I hear some variation of those comments. It minimizes her deafness and stings every single time. Instead you can ask her what it feels like when she takes her implants off at night, or what her favorite sound is, or when she wants to take her implants off. (Tonight when I told her I was writing this she said, “Tell them at night when I don’t wear my implants I can’t hear anything and I have to sign or read lips which is kind of hard.”)

*She will always be deaf. I know she doesn’t “sound” deaf. That’s because she started speech therapy when she was 7 months old, went to a deaf school that was a two hour round trip commute for four years, and still works hard on her speech and language at home and in therapy every week. I know “you’d never even know she’s deaf!” Yep. She is. I recognize that that phrase is intended as a compliment of some sort, but I cringe when someone says it (which is quite a bit.)  For a long time her implants were the same color as her hair and camouflaged. All the time people would mention, “Wow! That’s so nice that you can’t even see her implants!” What do those comments communicate to Monrovia about one of the most significant things about her? My guess is as a child she interprets the following: It is better if you don’t sound deaf. It is better if no one can tell you are deaf. It is better if your implants blend in.

*It’s ok to talk about her implants or deafness because we talk and think about it all the time. If you see her implants it’s ok to ask what they are and why she has them. After all, even Monrovia can tell when someone is staring at her and wondering what they are. She even has her own response if someone asks. If you have questions about her hearing loss, just ask!

The more people who understand this deaf journey, the more who can offer support and empathy, and the more who can advocate on her behalf and celebrate her successes. Even the opportunity to share this journey with others who listen is a gift to us, and in turn a gift to our daughter.

[You can read more from Susannah by checking out her blog, Good but Hard]

[To read other stories of People Living with Disabilities or Special Needs, click here]