Starting the school year with a child who has special needs…

Starting the school year with a child who has special needs…

The beginning of this school year marks the last year that we’ll send Evie to Northern Voices– a Moog school in Minnesota that teaches students with cochlear implants, hearing aids, and more to use verbal communication.  It’s the last year that we’ll be able to drop her off amidst peers that are just like her- who all wear magnets on their heads and have ear pieces that fall off and batteries that need replacing.  It’s the last year that we’ll have teachers who know exactly what to do if an implant is lost or a isn’t working.  It’s the last year of a lot of safety nets in place for us.

Evie wearing her new school shoes!
And, it’s most likely the last year where Evie will probably feel just like another kid.  I’m bracing myself for the day she realizes that wearing implants isn’t something most kids do.
Any parent reading this understands what it’s like to be pregnant and have so many hopes and dreams for your child.  I wanted my girls to be smart and caring and fun-loving.  I wanted them to be confident in their own skins.  I wanted them to be, like Nora Ephron says, the “heroines of their own lives.”
So when they were born at 27 weeks, the guilt I carried with me was immense.  I felt like I had robbed them of their potential.  And when we found out Evie had profound bilateral hearing loss (deafness) the day before we left the NICU, my world was turned upside down.  Here we had just survived 72 days of worries about brains, lungs, hearts, eyes, skin, livers, and more.  Here we had just dealt with tubes and monitors and oxygen tanks and PICC lines and CPAP machines, and more.  Not once had it crossed my mind to worry about ears.
NICU days- holding both the girls at the same time was a treat!
(We later found out that Evie’s hearing loss was caused from a gentic condition- Connexin 26 -and a Mondini malformation in both of her cochleas.  Evie would have been born deaf no matter what-even if she was born full term. Justin and I have a 1 in 4 chance of having a deaf child.)
The rest of the story is too long to tell here, but after 8 surgeries, 2 major infections, and countless hours of intervention, Evie (with her implants) and hear and talk like a normal almost-five-year-old.  It’s a blessing beyond words.
Evie’s first cochlear implant surgery
Evie’s second infection in her right side
But, I still worry.  What I worry most is that Evie will start to feel shame for her hearing loss.  I worry that she’ll start to feel embarrassed of having to wear a device on her head.  I worry about how she’ll respond when the first a-hole kid is mean to her.  I worry about what will happen when she’s 16 and wants to date and doesn’t know how to navigate that world.  I worry about prom.  I worry about who she’ll marry.  I worry about teachers who will think she’s not listening or paying attention, when in reality she just can’t hear. I worry about her academically- how will she fare in a normal school setting?
And, what I worry most about is that most people won’t realize that the technology only goes so far.   Evie’s hearing, though amazing, really isn’t “hearing.” It’s access to sound.  So, in a crowded room or restaurant, Evie hears everything at the same level. Tuning into a conversation with one person in a crowded bar will be near impossible when she’s 21.  And, Evie can miss things if she doesn’t see you or if your back is turned to her.  She uses visual cues as much as she does her access to sound in order to make sense of what we’re saying.  So, yes, I worry.
Parenthood is the biggest act of courage.   If I could, I would freeze time right now and not let the world get to her.  I would keep her this way- knowing that she’s perfect beyond measure.  I would protect her forever.
But I can’t.  So I have to be brave and make choices every day:
When someone asks her what’s on her head, I do my best to have Evie answer the question.  (“These are my implants and they help me hear noises.”)
When parents and kids stare, I choose to teach.  (Are you wondering what’s on her head? Those are cochlear implants.)
When someone is mean to her at school, I ask what part she played (because usually she played a big part!)
When Evie is a new situation (dance, swimming lessons, gymnastics), I explain to the teacher what it is, and then have to walk away.
When Evie is acting like a normal “fournager,” I choose to treat her like one!  She still gets time outs and consequences just like her sister.
Perhaps the hardest of all: when I want to protect her, I choose to step away and let her advocate for herself.
My child’s “disability” has been a blessing in so many ways.  I have learned compassion and love on a level I didn’t know existed.  As a teacher, when I see a parent enter my classroom and is anxious about how their child’s year will go, I truly get it.  When I see a student struggle with something, I want to go even farther to help that child overcome that struggle.   As a fellow mom, I now understand what a giant act of bravery it is to send your kids off into the world on a daily basis.  You kiss them goodbye and say a little prayer that you prepared them to do their best, that they’ll be kind to others and have others be kind in return, that they’ll make friends, and that they’ll come home still feeling good about who they are.
So, as enter this last transitional year with Evie, the only thing that I can land on is that we’re not so different after all.  Justin and I are just like every other parent out there who has to send their child- their heart- off into the world.  It’s incredibly scary and hard. It feels impossible to let go.  But we do it anyways because to show them how to be brave, we have to be brave too.
Being brave…