BeingDeaf.

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.

LabelOfIdentity

Label of identity.

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.”

LADD SYNDROME

LADD SYNDROME.

Did you know that these little cute tiny peggy teeth are a autosomal dominant characteristic of LADD syndrome?

Whilst this symptom will present with some problematic issues when she’s older, right now we are taking each appointment as it comes because no dental work will begin until early teens.

Our beautiful little Livy.

PECS

Introducing Livy to something new!

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.

Good work Livy.

Acceptance.

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.

TaleOfTheMissingAids

Now this is a story all about how these pink aids life got flipped turned upside down and I’d like you to take a minute just sit right there I’ll tell you how they became the missing aids of a palace called Blenheim.

In Northamptonshire born and raised
In Livys ears is where I spend most of my days chilling out, relaxin’ took a trip to a palace all cool and when a couple of fingers who were up to no good started makin’ trouble in my ear’hood.

Those fingers got me in one little fight and thrown in the mud and it was from that night I knew I would be lost and staying right there, in the palace of Blenheim.

I begged and pleaded with every stranger that passed day after day, but another kick by trainer sent me on my way.

I long for those days all dry and away from rain, muddy puddles and cold nights is this what it feels like living in the wilderness

Well uh, a torch light landed and my shiny case reflected in the pouring rain. A dude looking like a steward was standing there, whistled down his hands and he picked me right up.

I pulled up to a house about 20, 21 and I yelled out to the postie, yo I’m homie! Looked at my kingdom I was finally there, back next to that blonde frizzy hair.

https://www.facebook.com/BlenheimPalace/

It’sNotThatEasy.

For every parent in the senhood, we build a strong exterior to face the battles, not only for our children but ourselves too.

Livy does not only face profound deafness, she has multiple complex health conditions which aren’t always as visible. The happy, bold fearless little girl you see suffers in a world of silence too.

Livy has chronic constipation issues which comes with no signs and no warnings, unable to express herself or make her pain known. We solely rely on our instincts, observing her facials, her body language and emotions. As non trained medical professionals we have slowly become dependant on our gut instincts.

Although Friday came with absolutely no changes in herself and no warnings. Within a second she went down hill.
I have not posted this for sympathy, it’s more of a insight on how our confident daughter with almighty sass can turn a corner quite suddenly. This is our reality. Her bowel impaction is one which has its own set of complications and additional needs, something I don’t share with you often.

She has suffered chronic constipation for well over a year now, her bowel has been under so much pressure, she has lost the sensation of her need to pass stools. She is on two medications to help her consistency but yet we are to find that balance. And she’s still in pull up pants.

Friday, we attended a emergency audiology appointment to replace her hearing aids that she spontaneously and deliberately lost the evening before (more to follow up on that!) she was playing with the audiologist, suddenly she went very quiet and made her way back to me. As I stroked her hair and tried to read her expression, she projectile vomited everywhere. I have honestly never seen so much vomit from a child. A passing ENT nurses and a NHS governor body came to our help, and I honestly cannot thank them enough for their quick actions and empathy.

Unlike hearing children we cannot comfort them with our voice and calm our children down, but Livy solely relies on touch – sensory feedback. Which makes soothing her during this is incredibly challenging needing close touch and resulting most vomit down myself than in the sickness bowel. Due to being in freight she proceeded to panic and choke.
It took all my strength not to cry for my little girl. And the worst feeling is not being able to calm her down and take this away from her.

This is what happens when she gets too much pressure from the impaction and inability to control her stool movement.

She was rushed to a&e whom assessed her situation and increased fluids to replace what was lost from vomiting. And altering medication to return home.

These type of days take us by surprise, and remind us of the strength and resilience Livy has towards her complex needs. She bounces back and ready to tackle life as we know it.

I am so thankful for our NHS.
We are incredibly lucky to have this service.

Honesty.

When I started blogging around my daughters disabilities, I made myself become open to questions.

One struck me yesterday and it’s still on my mind.

‘How do you cope taking Alivia out with her brothers and is it hard to cope with?’

The intention of my blog was to be as real, honest and raw. Whilst I share photos of my children screaming of delight, beaming smiles exploring another national trust park… they are also the most challenging days we face as a family with Alivia’s ever testing behaviour, but there comes rewards too.

To see her express herself and explore new surroundings is simply beautiful, to stand back and watch.

Her little quirky noises, shrugs of over excited shoulders, her peggy toothed smile lights her entire face as her blue eyes glistens in the sunlight.

Yes, days out can be extremely stressful and left feeling exhausted, things never go to plan no matter how much we’re prepared. She is unpredictable. We try not to let her behaviour take away the goodness of the day for her brothers and we see it through.

Sometimes I become her mobility and carry her 5 miles to the car. Sometimes we give in just to make life easier. Sometimes we cut days back slightly shorter than planned. Sometimes they feel more hassle than it’s worth.

But the stress does not lie within her hearing loss itself. It’s the frustration of communication barriers and being unable to express herself, express to her the dangers of keeping her safe, unable to warn and guide her of what’s next.

When days out feel a little hard, this is when you dig a little deeper and find the beauty in the depths of your stress.

AssessmentsBegin

As her warm hand swayed with mine and Daddy’s down the steps to theatre, she showed no signs of anxiety, anticipation or apprehension of where the nurse in pink was leading us to.

I wanted to express my anxiety and share with you how it truly feels when your child is under General anaesthetic. I am more than aware there are millions of surgeries that take place within children under 5 and you maybe thinking what an over reaction this post may seem. But as soon as I received the letter I was already nervous for when my daughter needed to go under. For the next 7 days I tried helplessly to research other parents experiences to fully understand what to expect. (Like all those sleepless nights researching hearing loss in babies, you may recall?) I really struggled to find anything that I needed to read to settle my over racing thoughts.

This increased my anxiety and heightened my emotions. I am, unfortunately one of those people, who when feel out of control they need to know all steps of a process in order to be able to feel at ease and feel slightly in control of a situation without being there. Even if that means knowing all the nitty gritty details.

Due to the nature of the tests we both surrendered our hearing aids, the only connection we had to the hearing world (the only chance of communication to the specialists in the room). The only feeling I can explain is you feel isolated, withdrawn and detached from anything and everything. I immediately felt her pang of anxiety.

A silent bright, anaesthetically white room, full of machinery and uncomfortably unfamiliar faces restraining her, unable to speak out, unable to understand what was to happen, my daughter fought back as the mask was placed over her sweet little face. I held her tighter than I could imagine, knowing I couldn’t combat the anxiety and uncertainty my daughter feared, knowing I couldn’t be there to oversee and protect my little girl, yet even the tight hold of her mothers embrace wasn’t enough to comfort her. The muffle of her screams beneath the mask will be a sound that will haunt me for a while. As her eyes rolled back, her body finally reacting to the anaesthetic, went from pure restraint to suddenly limp and floppy in my arms.

This was something I found incredibly hard to bare placing your limp child on a bed leaving her in the hands of someone you’re forced to trust and needing to walk away. It’s was like gravity pulled me back and I kissed her snowy white cheek.

Alivia’s effort to fight against the mask being placed over her, like the little warrior of fierce stubbornness we all know, meant the usual guidelines of 10 seconds to work, took a little longer but just under a minute she was put to sleep. When our children inhale,the gas travels through the lungs, blood stream which then pass to the brain which begin the effects of inducing unconsciousness. Then to keep the affects of the anaesthetic a cannula is applied to the back of the hand, this will be when they inject an induction drug.

I looked back as the specialists began their work on my daughter, placing a cannula on the back of her left hand. She appeared safe and sound. Two nurses accompanied me outside the surgery room asking me if I was ok and cuddled me. I reassured them I am fine but my heart and gut felt anything but. Dad was waiting for my return. We grabbed a coffee and bite to eat, to pass the 45-60 minutes that we had to spare before being reunited with our daughter, neither of us could bare a chat. After a hour we made our way back hesitantly to the waiting room.

Every time I heard a door open I felt a pang in my heart. But every time wasn’t for us.

A hour and half later a male dressed in burgundy scrubs asks if I, mum could follow him as Alivia was just coming round.

I wasn’t sure on what I was anticipating to become face to face with… I assumed my daughter would be drowsy and curled into the ball she tucks herself in, all long limbs tucked under her delicate little body with her bum in the air.

As I walked towards the recovery room the sound was like something of a horror movie. She was screaming and distraught. As I reached the door I could see she was fighting against one of the nurses who was desperately trying to console my little girl. All limbs lashing out bending her body in unusual positions. Mouth wide open with a half scream half groan. It was like watching her being possessed. Horror movie material.

I tried to comfort her with my touch to let her know that Mummy was there and she was safe (to state the obvious talking is no option here) But she didn’t sense me, saw straight through me and resumed to closing her eyes tightly shut and throwing her curly blonde haired head back, continuing to lash out and groaning uncontrollably. I was reassured that this was a reaction to anaesthetic in young children that they see often. And she would need to sleep again until the effects are worn off. As they felt sure she would be ok, we met dad in the corridor of the hospital whilst I tried my hardest to lay on the bed with my daughter providing a source of comfort and keep her from wiggling around the trolley bed. We had to pass the main entrance, which Alivia’s reaction meant we was met by concerned, curious looks of the publics faces.

Emergence Delirium, you can forget the thought of being reunited with a drowsy sweet child. You’re presented with your child being a force to be reckoned with. An irritated, inconsolable, uncompromising and combative possessed child who cannot recognise her family, objects (a sodding £19 jelly cat unicorn she hasn’t touched since!) Alivia was basically thrashing herself around on the trolley bed, eyes shut tightly closed, kicking punching and part incoherent screaming and crying.

It was honestly not the nicest thing to witness as a parent and there was nothing we could do or help Alivia, until she went back into a deep sleep. I don’t know how I’ve become emotionally strong and resilient with regards to challenging times. But I am so thankful I am, otherwise I think dad, would have broken down too.

As we made our way back to the children’s ward, after 20 minutes passed of this possessed energetic acrobatic body movements, Alivia feel back into a deep sleep.

In a deep sleep after the effects worn off.

Her dad and I kept exchanging looks of WTF… what an experience! To think she was only down for a hour and a half. I dread to think how she will react if cochlear implants are a success.

The best snuggles.

After nearly two hours of a sleep, where she continually had her obs checked. We decided to ask a nurse if she was ok to wake up and try again. After a couple of minutes our cheeky girl was back, almost immediately signing for food and ate an entire plate of sweet and sour chicken, go on girl! Nobody really truly knows why this reaction takes place, but it’s nothing to be alarmed about or causes any affects to her. Apart from being in the moment where they can potentially pull their line out or fall off the bed. I wish I could have prepared myself a bit to know what sort of reactions are possible. But we know now, and there is no need to worry because after the initial 15-20 minutes we know the episode will die down and she will fall to sleep.

Food. Drink. iPad. What more could you need?

We look forward to the future with Alivia continually taking every test, assessments, hospital appointments and educational appointments in her stride. As always her strength and resilience to her daily struggles is outstanding how at 3 years olds she is this remarkable. Mummy and daddy love you darling, and although mummy can’t always take your fear or pain just know for every tear that falls from your big blue eyes, two fall from mine.