So often on the journey of raising special needs kids, we get wrapped up in their progress, their process, their needs, their difficulties and their victories.
Much of the time, people only see the sacrifices, the challenges, and the struggles that allow the child to be invested in and loved on. Whilst these are very real, this journey is definitely not a one-sided-only gain. Whilst I appreciate the will of others to understand me, the kindness behind the empathy…there is no need to pity me.
The day of identification, reminds us that we are fragile. Fragility is both beautiful and painful, and allows the barren callus, which we have grown to protect our emotions, to be cracked and broken. It allows for softening and newness.
The times of needing and accepting help, engage moments of uncomfortable vulnerability. I so clearly remember the night when I called my mentor for the first time…that evening changed my life. As I plugged her cell number into my phone, I hesitated. “She’s a professor, what if I’m judged for missing the fact that they are deaf, for leaving it so late?” I knew I needed help, and dared to be vulnerable. Embracing vulnerability, allowed me to be embraced in return, by Hope.
Being caught in the eye of the communication choice storm howling around me – opinions and voices determined that their opposites were true. I learned discernment as I weighed up the pros and cons, whilst following my girls.
When I said the word D-E-A-F for the first time and met other Deaf people, I looked fear in the eyes. The heaviness inside me eased, as I allowed myself to lift my gaze and see what it actually meant to be Deaf. I was forced to be courageous, and discovered a wonderful brave new world.
As colleagues in medicine immediately asked me about my faulty genetics when I mentioned my girls, as if I carry something very flawed and unfortunate, I learned that not everything I had been taught had been true. I discovered the power of words, the flaws of text books and the strength of empathy.
As first signs emerged, and we communicated for the first time about wet shoes, I discovered myself being able to celebrate the ordinary. There is continuous joy in celebrating the frequency of ordinary.
As I laid down my career dreams, and embraced the privilege of mothering the Deaf, I tasted what it meant to let go for the first time. Not being in control looked a lot like freedom.
When I woke up on days where I didn’t want to crawl out of my comforting bed, I learned that I could hide in a Secret Place, one where the serenity of Hope and Peace has been a soothing balm to any inner hurt.
As I began enjoying the world discovering my girls, I found a joy, unlike anything I’ve tasted before. A joy that says, “It’s okay to be different, hey, it’s even quite beautiful.”
As I sat on the bench, watching her being chosen last for the team amongst hearing peers, I felt pain unlike any other. Pain that reminded me that I was alive, and breathing and feeling.
As I was told to accept the ordinary, as anything more was just too hard to fight for, I discovered that I was strong, tenacious and determined.
As I’ve focused on communicating, I’ve discovered that extracting the inner thoughts of that little person, and understanding what’s in their heart, is something easily missed by the average parent of the average hearing child. Having to listen carefully to those hands, expressions and vocalizations, has been completely enabling.
As I’ve scrutinized education options, studied policies and sought out those that know better, I’ve found so many weaknesses in a system, that I likely would have otherwise trusted.
As I meet barrier after barrier, and brainstorm ways through these, I’m learning to become resilient.
As discrimination and bias fill me with hateful rage, I am reminded that I am flawed, in continuous need of Grace, and challenged to re-mould the anger, into helpful strategy.
Engaging intimately with friends journeying similarly, has allowed me to encounter the life outside of the fakeness of Facebook. One that screams, “This is really hard, but you are not alone!” Instagram smiles and Facebook ‘likes’, cannot compare to the richness of just being real.
Whilst challenges are faced, and joys interject, whilst systems are fought, and quite frankly, people are offended by my persistence in wanting more for my girls, I’m forced to face my insecurities, forced to leap out of the comfort zone, forced to venture into uncharted territories and invited to trust…continuously reminded of my need for Grace and my utter dependence on Faith.
And when that sweet breath warms my cheek as we do butterfly kisses, I know what it is to love unconditionally.
I have received gifts that no money can buy. Gifts that aren’t visible or tangible. Gifts that are immeasurable. So whilst I give and sacrifice and help and serve, I am being blessed beyond measure on a parallel experience curve of my own. To die to one’s preconceptions, meticulous planning, imitation dreams and plastic comparisons…is simply, to gain.