How being deaf has taught me not to give a f*ck.
This time 4 years ago, not a doubt crossed my mind that this little girl inside my tummy could lead me onto a journey of raising a deaf child. A fabulously sassy deaf child may I add.
This brings me to nearly 4 years, since I have committed my all to ensure my profoundly deaf, warrior of sass never saw herself as different or her ability/ inability to match alongside her brothers or peers, ensuring her personality is never moulded to fit inside societies ‘box of acceptance’. This also means I faced my own demons of acceptance and embark on a journey of truly embracing my disabilities, flaws and all… I’m still learning myself but what I have learnt is…
You know, raising a daughter with more stubbornness than a trying to move a brick wall! Yet she can express herself to be the most loveable, caring, bouncing vibrant little soul I have ever been lucky enough to meet. Never mind being a little somebody I nurtured myself.
Raising a child that don’t typically fit the mould, comes with its own mind blowing, challenges. Picture extreme weather in a storm… everything is spinning and twirling around you, high winds and rain that pelts down on your skin… that’s how it feels when your little one decides to throw an ultra fit because she doesn’t deem it acceptable to leave the play barn after 2 hours. Or the fact you have put her favourite shoes of 7 days in a trot on and all of a sudden she explodes in frustration because these are now no longer her favourite! But honestly being Deaf myself and raising a little girl has its moments. Some days, you make me fight my greatest fears seeing how brave you are at hospital appointments or procedures, to making me find strength I never knew existed, to making me feel the proudest mother alive, as I beam with sheer pride looking at your peggy toothed smile, then you go and twat your brother and I’m forced back to reality that you’re a sneaky little force to be reckoned with.
Little Livy, you’ve opened my eyes and many others around you as you’ve welcomed us into the world of deafness.
Before you, I hid my own deafness and struggled for many years with communication. I battled wars with myself to become open and honest with my struggles and only now have I realised just how adaptive the world is willing to be once we find the right people/ job. (My manager really needs more credit than she gets and recognition from the company, but I will touch up on this in another blog. She saw something in me in my darkest times last year, when she could have easily rolled her eyes and dismissed me. She held on and ignited the flame and I found my old self belief again. So for those battling with a new found condition, illness or just mental illness… please know this is not your ending. It’s just your beginning.)
Hearing people really take their ability to communicate effectively for granted. The complexity of this seemingly simple task, is in fact a sodding nightmare for deafness. Although I understand Livy’s tries of communication to an outsider we either both like bonkers or I’m a magician… I’ll let you decide… communication takes time and work, as in most areas of life aka relationships!! Livy will soon learn in time to come she’s going to have to fight her own limitations in order to be able to build a pathway in communication. But honestly, without speaking I’ve become to appreciate the beauty of sign language, body language, expressions and facial expressions. We can learn a lot from this little girl.
When you’re child has challenging behaviours due to sensory seeking, she seems to draw a hell of a lot of unwanted, unneeded attention. People gawp and stand there, some often pull their children aside to warn them off her. Being deaf and unable to hear herself I’m pretty sure she can be the offset to a earthquake with her shrieking scream. People look at us like she’s being tortured with a boiling cattle prod!! Dining out causes more social anxiety than you can ever imagine, when you try and resonate with a 3 year old that’s more hyper, bouncing off the walls than some teen on a form of speed at their first rave… trying to sign NO! And STOP! With a more seriously stern face, giving Alan sugar a run for his money, comes the deer in headlight eyes, the bottom lip threatening to wobble and the enormous scream that erupts from the pit of her soul… I’ve found the strength in ‘not giving a fly f*ck’. And mastered the art of the concept ‘it’s their problem not ours.’
In today’s world of wanting that dreamy insta worthy account, striving towards vanity aka insanity. The likes and followers that feeds our ultra obsessive social media ego, being deaf and dealing with reality has pushed me to be open and honest with myself. To stop forcing myself in carrying unnecessary weight of unrealistic expectations. Becoming a mum to a child with a disability is like walking into a room blindfolded, completely walking into a room of the unknown. One minute we’re sky high and the next we’ve plummeted into the deep depths of struggles and trials.
The fear of introducing the ‘real me’, to someone is incredibly embarrassing. Specially since my son has started school I soon realised the real me had to be displayed and I no longer fear rejection or feeling terrified of the prospect of feeling the embarrassment of others who had a ‘deaf’ friend. I’ve actually met an incredibly amazing family displaying ‘the real me’. And a friend I feel I’ve known all my life. She, her husband and little dude have well and truly accepted all our flaws. She’s completed the missing part of the puzzle, I never knew I needed. Our little families have moulded into one.
I will try to the best of my ability to ensure Livy should never bare the weight of, ‘what if I don’t fit it’, ‘what if they find me embarrassing’, ‘what if I don’t fit the mould’… NO honey, you will be that missing part of somebody’s life. YOU will be everything out side of the box that somebody needs. We’re beautifully imperfect in a world of people striving towards Unachievable perfection. I’m absolutely over trying to fit the mould.
As a person who suffers anxiety, I am also weirdly the same person who is willing to push myself and my boundaries to the extreme since having children. I am willing to make myself uncomfortable to prove we are capable of ANYTHING we set our minds to. If anything scares us, challenge the fear and recycle it into excitement and thrill. We can accomplish anything. This very fear I use to feel about asking for help, putting things I felt was slacking in regards to authorities meeting my daughter’s needs. I have challenged that inner insecurity of speaking out and now unapologetic in voicing my concerns and opinions to meet my expectations to ensure Livy gets the best of the best. If anything accepting my deafness, has made it cheer me on and having my own back in regards to owning our disabilities with pride.
Having a rare and complex syndrome has forced me into having expertise in our shared condition. I know more about us than any medical professionals. I’m a lecturer and nurture others understanding of an insight into our world. The thing with disabilities we have no option but to learn to adapt and educate ourselves on how to live with these difficulties. Us parents are quite frankly undressed superheroes, we honestly do not give ourselves enough credit.
I’ve also learnt to build an amour against, words towards being deaf, yet in the mist of the storm, being in a timid fragile state of being completely worn down I find myself wondering and question why raising a child whom is deaf, is so hard? Then I remember just being deaf is exhausting in itself.
The also brilliance of raising a child who is deaf is the ability to protect her from the cruel, minority of Individuals who frankly lack intellectual integrity towards others, I can shield my baby from harmful words, heart wrenching questions of her differences. Her bubble of love, happiness uniqueness and everything ‘Livy’ remains unburst due to the inability of being able to hear poison. And I’m all over that!
Lastly, I cannot simply wait to share juicy details over lunch together, because lipreading a over heated looking conversation across the room is like breathing for us… I cannot wait to give you the reassurance you desperately look up to seek in a room that’s silenced because the power of using our hands for communication provides no distance for us.
Being deaf and raising a deaf daughter has certainly become the most valued, challenging yet rewarding thing known to my life.