4 years ago you was delicately wrapped and placed on my chest. I can remember like yesterday looking down at your vernix covered button nose. The teeny tiniest nose I’ve ever seen. Your long sloth like fingers wrapped around my thumb.
You’ve shown resilience to the point of stubbornness towards every conquered quest life has presented you in just a short amount of time.
Your quirky personality captivates everyone in the room, as your white frizzy curls bounce, peggy toothed smile or your whacky noises that are so individual to you. You’re overly animated facial expressions speak all the words, so you don’t have to. Your zest for life and enormous boundless energy make you brim of affection, attitude and curiosity. The feistiness is almost humorous when you scrunch that near non existent nose. Your incredible vitality and thirst for trying to learn and adapt to new settings and skills set by educational professionals.
I never thought it would be possible to be as proud and feel my heart ache at the same time when we’re sat at another hospital appointment for the 3rd day in a week. When you allow another strange face to be greeted with your shining energy as they point out your unique flaws. Every Tuesday is our day, every Tuesday that goes by I beam to the point I could cry as I soak in and cherish every ounce of your forming character, to love a being from the bottom of my heart as much as I do with you.
I wish I could freeze the beauty in the moments because this year your little personality has flourished and shown us plenty.
So now you’ve entered into your 4th year, a year of independence awaits you, as you start big girl school. We’re not sure where that will be just yet. But I know for one, you’ll move mountains where ever you’re meant to be, never be afraid to look back my darling because Mummy and daddy will always be there to cheer you on as you set off on your big girl adventure.
My little seed has grown, you’re no longer a shoot, you are the most beautiful flower that shines and radiates the sun on everyone around us. And every day, you bring new meanings of trials and tribulations.
How are you all? How are you keeping during quarantine?
This can be an incredibly lonely isolating and anxious time, specially for those who’s respite care/ Schools has been shortened or stopped completely. For those who’s professionals or carers have been cut and we’re winging it alone.
Please feel free to comment below, we’re in this together after all.
I’m pretty sure we can all, almost smell the anticipation it’s that high in the air right now.
As people scrap for medicines, as the elderly fight to be heard for their needs to be known, as panicked Mummy’s of hungry babies travelling high and low to ensure their babies are not without their essential needs. As Families of special needs children are gripped in fear of no longer knowing when their next respite is. As working and non working parents are worried of the juggle between home schooling and working from home. How we’re going to pay our bills and keep our roofs over our heads.
The atmosphere is buzzing trembling of fear.
Yet, as beautifully illustrated below, our NHS staff are rising every day and every night. Our paramedics, police and emergency services are still battling their way through the endless calls coming in for first response. Our under appreciated cleaners are ensuring the wards and corridors are clean, our shops and schools are clean and germ free keeping us safe in moments of need. Teachers are under pressure to answer questions they cannot predict right now, under pressure to keep the little minds grounded and secure, keeping them blissfully unaware of the panic the nation faces, whilst being under pressure to support parents in this moment of uncertainty. To our Care home and special needs supporting staff, ensuring our elderly relatives or family in supportive homes are safe and sound. Whilst company from loved ones is forbidden.
So whilst you reach out for your multiple packs of food In your over flown trolleys, a nurse returning from a over run 12 hour shift is possibly over worked and exhausted looking for baby milk to feed her son, she hasn’t seen for more than couple of hours this week. Or a paramedic that’s worked extra shifts needing the bare essentials to energise themselves. To the lorry drivers needing milk to add to their coffee for their 7th long haul drive. To the teacher who has been up all night making home educational packs individually thought of for each child in mind. To all the carers and cleaners, Thankyou for all you do.
Please be kind. Please be thoughtful And above all keep safe and sane.
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.
As we’re consumed by the perfection of a generation that has formed by social media, we are surrounded by forms of identity. How we portray an identity, how we truly identify ourselves and how we are identified by others perceptions.
How do I cope with a diagnosis for my daughter? Others thought there would be a worry that a diagnosis would make my child be seen as different. Or shall we say ‘identified’ as different.
During this process with Livy, I never even considered this. I never saw my daughter as different with a diagnosis or without. She is simply ‘Livy’. With a proposed diagnosis of a form of albinism. I still wouldn’t allow herself be identified or defined by this.
I myself, do not identify by having a diagnosis of LADD Syndrome, Trigeminal Neuralgia, Hemiplegic Migraine, Optic neuritis or Hearing loss. I do not allow myself to feel any less abled or different to others. Nor do i allow others to define me by my complex illnesses.
It’s fascinating how complex this single word can be. How would you identify yourself? We alter our identity for every job position we apply for, for medical appointments, for friendships and beginnings of relationships, but why? Why do we identify for every context of a situation we face? Within the layers of life experiences, career, hair styles or fashion and makeup choices, qualifications, disabilities, hearing aids, glasses, motherhood who am I?
Who are we?
The reality is, no matter what or how we portray or identify ourselves in a certain way, we are always going to be perceived by a particular identity from others, due to what they’ve been told or have seen, have judged us upon present or from our past.
Before motherhood, others may have associated the most identifying part of me as being ‘deaf’, recently a ‘Mum of three’ then became my identifier, shortly followed by being the ‘one with a deaf daughter’.
When around other families in waiting rooms of hospitals we simply identify a child beyond their disability. By the colour of their hair, whether their twins or older siblings. Not by the fact they’re non verbal and communicate via sign. We don’t identify them by whether they’re a hearing aid or cochlear implant user. Or by the fact they wear or don’t wear glasses.
Outside the medical and deaf field, to the minds of every other person, our identification will be ‘deaf’.
I hope to inspire Livy and other readers to not allow your own or your child’s complex health conditions or rare diagnosis’, become the anchor of your/their identity. Don’t become obsessed by the prospect of various ways others assign your child’s identity.
When all three of my children are together, I do not select their identities as two hearing boys and one deaf daughter. I select the finer things like who was born first or perhaps their likes and dislikes or what activities they enjoy to participate in. But again this is my view of their identity, which means it’s solely dependent on our viewers.
I feel beneath the defining opinions of me, may they be accurate or not, may that be the full in or outlook of how my life and personality presents, I often wonder who am I? What IS my identity? What is the anchor of my identity? Because if at 28 I don’t know who I truly am, how can I merely teach my daughter to never allow her to be defined by her disability, or dictate how she views herself.
If you strip back every layer of labels surrounding our identity, what are we truly left with? The real identity label of our truest form?
As a child facing severe development delay due to disability. I want my daughter to know that, she was born to be fearlessly independent and created with a purpose. I want her to be empowered and wear the cloak of labels outsiders stick upon her with the deepest of pride.
And that’s what I want to try and remind Livy and her brothers continuously. The essence of who they are is deep beneath the layers they are assigned by others.
And as I breathe for a moment taking in the trials, tribulations of this entirely unknown journey I face and the many storms I have seen through which continue to howl around me… I should never doubt myself over people’s labels of me and my abilities. I should never feel overwhelmed by the expectations of myself and what others expect of me. And I should never allow myself to question the strength and resilience to provide and see things through that I truly believe in. Which is ensuring all aspects of my daughter’s life are met to ensure she has an incredibly strong bright future just like her brothers and momentarily I know I am comforted by an achievement and then I’m reminded that this too is my anchor.
My anchor is the essence of my strength, I never knew existed until I became a mum. Until I became poorly with neurological conditions. Until I lost my hearing. Until I overcome a horrid childhood. Until I overcome school bullies. Until I looked back and realised I should identity myself as a striver and Overcomer.
“A person who doesn’t sit back when the going gets tough but battles on. A person who in the face of adversity stands tall; equipped with tenacity and wisdom strives to overcome the obstacles of everyday life. A person for whom obstinacy is a virtue.
A noun to describe this hero?
There’s only one type of person who fits that criteria and that’s a mother.”
Since Tuesday we have been given a communication book by her SALT therapist.
A new project to both Livy and I. I’m still trying to educate myself on PECS and the best way moving forward with this. Her book is quite intimidating and very busy with lots of pictures/symbols. But luckily Nanmar came to the rescue with some bigger and colourful PECS that we can use but we are learning together along the way.
Hopefully this eases some frustration for her.
Here you can see she’s identified the customised hearing aid PECS to her hearing aids.
I will keep you all updated on our journey. And remember what works for Livy may not work for everyone. It’s all down the the individual.
Talking about my own journey with hearing loss is still something I struggle to admit to. It’s not something I feel freely comfortable about. And whilst I realise the irony of raising a daughter to be proud and accepting of her deafness.
She is really the one reason that’s leading me on a journey to accept my own disability myself. I lost my own hearing around the age 8-12 nobody really truly knows. And I have spent many of my teenage year feeling sheer anger towards the world, hating myself, Embarrassed by myself and the new life I was forced to live as a now deaf person.
But perhaps one day I’ll talk about this soon, I’m just not ready yet. So here is a little insight to one of my struggles…
As an adult with hearing loss, the simple things, everyday things in life can become exhausting.
How can hearing loss lead to a feeling quite like exhaustion, I hear you say. (No pun intended!).
Having a device like a hearing aid, which works by amplifying the sounds, leads us into being ‘in between’ the deaf and hearing communities, the aids act like a bridge bringing us together.
Yet, I cannot solely depend on the hearing aids. The aids do not always give me the accessibility to access all sounds when there’s lots of disturbances like background noise in shops for instance, the music, air conditioning, hums of chatter by others around you, footsteps and clatters, the high pitch of a baby or child scream or cry. Doors opening and shutting, rustling of a bag can all take away the sound you’re trying to focus on.
Being deaf you can absolutely find yourself working above and beyond to hear. Working in retail, possibly the hardest career choice for a deaf person, I concentrate intensely and rely on lip reading my customers and fellow team members and have to concentrate in order to be able to keep up with hearing people. When needing to use the phones, you have taken away the help of lip reading, taken away the ability to read people’s body language and facial expressions which is extremely helpful and important when trying to identify the nature of topic which can be problematic. I have to consistently repeat myself and really focus on ensuring I’m hearing correctly without the aid of support when a person is in front of you.
I really do struggle and the focusing is exhausting. Whilst I am incredibly lucky and privileged to live in a country where resources like hearing aid equipment and testing is free via NHS, being given the ability to hear my children say I love you is overwhelming and I’m beyond grateful to have this opportunity, but times when the days feel tiresome or challenging I do take the hearing aids out and it is very liberating to really appreciate and take pleasure of the silence and be deaf again.