POLAND

This weekend was the first weekend in my 3 years of motherhood I have ever taken time out to be ‘me’. 

 Unless I was giving birth, I have never spent this much time away from my children. And the apprehension leading upto the weekend was crazy. I tried to cancel it 4 times, make out I was poorly anything to stop me from leaving my three tiny beloved turds. 

 I moan I’m being driven batshit crazy when I’m with them, then I become and emotional uncontrollable mess when I’m without them. 

Ahh the mother guilt hit me strong and hard. I felt physically sick and anxious whilst traveling to the airport, demanding answers from my questions, ‘what if Parker doesn’t sleep and he needs me?’, ‘what if he doesn’t drink formula milk and he becomes dehydrated and Ill from thirst?’, ‘what if something bad happens and I can’t control it?’. 

But us mummies need to realise how important it is to take a break and recharge from being the over worked, tired mummy and become YOU again. Become Beksie, for just three days and enjoy being me. I left my ‘mummy of three cloak’ upon the door as I left and shut it behind me.

Since being away for 3 days, which believe me has been significantly difficult. Like trying to separate something stuck between a layer of superglue, I feel refreshed. Recharged and in control. I return home ready to face new challenges motherhood throws at me, I get ready to embark on a new career. A career I want to progress and allow my creativity to enhance. 

Like most mums, we don’t really appreciate how much we juggle and keep the house in order, from family and working life daily. My week combines working from home trying to take a bespoke crafts company off as well as 20 hours a week in a busy successful fashion retailer, I look after my children, try to do my best in teaching my ridiculously strong willed and full of sass profoundly deaf daughter her way in life as much as she teaches me new boundary levels of patience and try my best to keep the house and laundry tidy and clean, but I am not a mummabot. In the words of the rag and bone man ‘I’m only human after all’ so I need time for me. I need to recharge and become a stronger, happier, and a better mother for my children.

Having time away from your little bundles of sunshines, or in my case cling on little turds is essential. It doesn’t mean you don’t love them if you want some time to yourself. It doesn’t mean you are vain or selfish if you take time to get your hair or have that long awaited soak in the tub without feeling pressured to get out by your son turning red in the face and boarder line turning into a mini monster from screaming at the top of his lungs because he wants titty milk and you’ve gone an extra 30cm too far for his liking. Go to the gym, or do something you love – ditching the guilt is the first step towards becoming a better parent.

As the saying goes, ‘You can’t pour from an empty kettle’. 

‘I didn’t think I’d feel guilty about popping out to get some shopping never mind returning to work for 20 hours. Or nipping to be gym for an hour. Or going for dinner with a friend. Or indeed – blitzing the house top to bottom barely paying any attention other than popping your head around the door to ensure they’re playing nicely and not in fact attempting murder on one another. But I do. MUM GUILT!’

From the day my child arrived guilt overwhelmed me. Feeling of a split personality – one half of me ruthlessly creatively ambitious with a million dreams and ambitions buzzing around my head to be the next in house designer or the next creative media producer – the other half just wanted to stay at home for the rest of The trios childhood – baking cakes, reading stories, colouring in and teaching them all they need to know about life, like the mother you follow on Instagram who uploads heavenly photos of the things they’re doing with their children…You know, replicate that perfect fairy tale mother.

We’re only human after all, ditch the mum guilt. 

x

BEKINDTOYOURSELF

A4492B93-13A7-4B95-BC95-5E3385DBEF35.pngMummies. 

We all experience good days and bad days, great days, normal days, overwhelming days and perfect days or trying days, supermum days to testing days and just being a mum days. 

It takes a whole lot of patience, love, realism, strength, smiles, warmth, tears and tantrums to be a mum warrior. 

So when you feel like your having a bad day, or feel like your just not doing enough or good enough days, please note your doing a fantastic job regardless. 

x

TUESDAY

b16da5c9-aa50-4682-b3db-625a582a7b38That Tuesday.

I remember not quite sleeping that Monday night, I was on google during every feed. As she lay there close to my body, sensing a form of protection and secure bonding from breast feeding I felt I was doing all I could to make the start of her life better.

I must have read about 100 forums, disability pages, how the structure of hearing loss is measured – you name it I became a pro of hearing loss and audiology over night!
I was still fighting a lot of guilt, a lot of what ifs and struggled to see her father forgiving me. I sensed his sheer devastation and heart break just by the look in his eyes. The amount of times I apologised for the difficulty our daughter faced, and the amount of times he told me it wasn’t my fault. I didn’t take any comfort in his kind words. How could I? Our precious tiny girl faced a life of unknown to us, silence, dark and gloomy. The way I can describe, in my own words since losing my hearing is, can you describe a storm but in sheer silence. What do you picture, What can you see?

– The world In front of you begins to turn dark�- The hairs on your body start to stand on edge, it feels the cold and soon you’ll start to shiver and feel wet from the downpour. �- Clouds shadowing any life and happiness on the ground �- You can no longer hear the deep groan of thunder, so everything stands still or there’s a strong sense of anger from the storm of nature, where its winds are picking up and throwing anything in its way. Then you see the flashes of anger and almost frightening from lightening.

This almost resembles my feelings to the unknown explanation of why I lost my hearing in my early teens.

We was silent on our journey to the hospital. I’m not sure if we was anticipating the results, convincing ourselves it wouldn’t be so bad, after all prior to this appointment her father was positive she could hear and she was interacting. I didn’t hold or see the same hope he did.

We was called into a room, and told to settle Alivia and rock her into a sleep, which i did. She had some sticky product applied on her forehead and behind her ears. Which was then followed by a pad and clips with wires which then attached to the test itself. The room is silent and the audiologist starts her investigation. Myself and Dean kept giving each other reassuring glances as I held my sleeping baby, I kept watching anxiously as the audiologist clicked her mouse and I immediately diverted my attention to Alivia’s face, searching for a response to settle my nerves. Clicks or tones of varying intensities are presented via probes placed in the ear canal. Electrodes are attached to the mastoids, which is what the sticky pads and wires are used for. The sound in the ear canal passes to the cochlear which converts the sound waves into a nerve action potential which passes along the auditory nerve. Then the signal travels to the brainstem and on to the cortex where it is processed by the brain. This wave of activity is collected by the electrodes, amplified, and passed to a machine for processing. Presenting progressively quieter sounds enables a response threshold to be obtained.

The test must have lasted for around a hour and half, until Alivia-Ellen started to become restless and unable to settle again. But I must admit I was glad for the audiologist to call it a day, she received half of the information she needed to give us a form of result, my body was aching from her c-section delivery just a week ago and having to hold her so still to not interfere with the test was a killer! But at the same time I didn’t want anyone else to hold her, not even her own dad. Which could have been seen as selfish. I felt this was all my wrong doing, therefore I needed to protect her and show her that mummy was with her every step of the way.

The audiologist confirmed what I already knew deep down, just unwilling to admit. Her left ear wasn’t giving a good response to the test compared to her right ear. They both also gave inconclusive results among the test. But what she could collect, confirmed Alivia most definitely had mixed Sensorineural hearing loss and she was marked at moderate to severe. We was told in great detail what the next steps was, ensured we fully understood her type of loss and we was referred to a consultant also.
�She left the room to give us some time to allow it all to sink in, there was a lot to absorb and understand. Even with hearing loss myself, this was an entirely different journey and experience.

Her father turned to me, his face looked like it was struggling to be held up. Threatening itself not to break its strong structure. His smile was weak and heartbreaking, eyes filled with 100 emotions threatening to flood and pour down his face. My stomach knotted and I tried to form a warming smile while reaching for his hand, as if to say everything will be fine.

His strength defeated, he broke down in tears, “my poor baby girl”. And took her from my arms and held her tightly. As if he was attempting to fix the pieces back together again. But unfortunately nothing was broken this time, nothing can be changed or fixed. This was a life completely different to what he would ever expect.

We left that room, full of emotion. For what ever reason, I couldn’t cry. I couldn’t feel a thing. Maybe numb from emotions, or trying to remain strong for Dean and Alivia-Ellen or show him I was capable of dealing with it and what was to come.

We had an amazing response from our families, each individual was reassuring to us. And their kind words couldn’t have been more comforting.

We didn’t really know if we wanted to break the news to the world just yet, but I thought it would help us deal with the news and process it quicker if we confronted it. Which we did so, again on social media we got a lovely warming response.

She was fitted with her hearing aids at 3 months old. But showed very little, if not hardly any response at all. Which was absolutely devastating as we saw so many clips on YouTube with babies smiling straight away after hearing it’s mothers voice for the first time. But we tried hard not to let this be disappointing to us.

She had this form of testing every month until she was 8 months old she then moved onto what is called a distraction test. Know as a VRA.
�This is a technique that can be used to determine frequency and ear specific hearing thresholds.
�The child is seated between two visual reinforcing reward boxes with a loud speaker on top of each one. To condition the child a sound is played from one of the boxes on the left or right, as the child turns to the sound they are presented with a visual reward in the form of an illuminated puppet in the box.
After several times your baby will now be magically trained to turn to one of the boxes when just a sound is played. Although Alivia did cheat a few times and would turn her head just to see if she could see the bunny or a bus light up. A series of tones are then played at reducing intensity to obtain a minimal response level. After the child turns to a sound they are visually rewarded with one of the puppets. In order to obtain ear specific hearing thresholds the child may wear headphones or have small insert phones placed in the ear canals to generate the stimulating sounds.

At 10 months old, was when they finally received a full investigation result. Alivia-Ellen displayed very little response, and what we thought was progression wasn’t quite so. She was then finally diagnosed with profound deafness in her left ear and severe/profound deafness in her right ear.

My heart sank. And I could almost hear the crack of my mothers heart who was sitting behind me. Alivia was then given the strongest prescription of hearing aids. But again the possibility that she would benefit from them or not wasn’t certain…

We are still currently at this stage and there still isn’t a clear satisfying response while wearing her hearing aids. Sometimes she may turn, others she’s blank. She’s due a review and more tests in August. Which I will try to document so all of those who don’t know what to expect or would love to know what happens, can witness this.

We have discovered that having a baby who is deaf will take more on your part as a parent. More time, more patience, and more work compared to the parenting we provide to our oldest ‘hearing son’. It will be different, but Different isn’t bad, it’s just different!

Remember that every child is unique and has a variety of needs. Even our son has needs that need to be kept and maintained. The demands of extra time could just as easily come from a child with a learning disability, or an extremely bright child that needs consistent stimulation. It doesn’t in any way change or diminsh all of the wonderful experiences of being a parent. I think the experience of having a hearing and non hearing child makes you stronger and change as a person due to the challenge of parenting.

Your walls become unbreakable, yet you also appreciate and soften, you become knowledgable in your child’s condition, more than most professionals and form patience you never deemed possible.

Your baby is the same beautiful baby, it was before you found out that they have hearing loss. The only difference is that you may have to learn to communicate with her a little differently, than you imagined.

Let this journey help set the foundation for your attitudes and opinions about what your child can be capable of, don’t feel your expectations for them have to different or lower as your hearing child.

We have no reason to ever expect less of Alivia-Ellen or assume that she would or could achieve any less than our son.

FailedNewBornScreening

95944fa7-dc0f-43e9-a21b-c0ae68dbd1edSince my first born, i think I had felt apprehensive throughout the pregnancy with Livy that I wouldn’t feel an emotional attachment straight away, I was petrified the black cloud that shaded my first time as a mother was lingering, ready to pour over what should be new found happiness and content.

Soon as Alivia was placed on my chest after what seemed a life time waiting, due to being stitched up from the c-section. I gasped and sunk in all her little features, her tiny perfect nose, small body which seemed weightless compared to Luka-James, my first child. Her long fingers with perfectly shaped nail beds. She smelt beautiful like all newborns do. Feeling her on my skin made my body relax, we’d done it.

Produced a beautiful, healthy small human. Every ounce of me filled overjoyed, with love.

For the first day and night we spent together, I’m sure many other mums will agree it goes so quickly. Your shattered, in pain, zero sleep and constantly feeding. But some how your body is just programmed to run on love.

It was day 2 when I had a pang of anxiety. My mother dropped a can of coke onto the table which was next to the hospital cot. And Alivia didn’t startle, turn or cry. Completely oblivious. I put it down to being 3 weeks early perhaps their reflexes aren’t as strong.
When my first born was a few hours old, everytime someone opened the steel bins and left it to shut itself, he jumped.

It was the next day the audiologist came round to do the newborn screening, she hooked my tiny little girl up to the device and reassured me everything should be fine, she failed one ear – but I was told it could be due to the back ground noise from other new parents gushing about their new babies. She asked them to be quiet and we resumed the test. She failed again, while doing the tests she was fast asleep completely unaware.

The audiologist said she would come back in a few hours and retest Alivia once the cubicle across had settled down and a bit quieter…

Two hours passed. I was beginning to feel riddled with guilt. I texted my mother asking her to get to the ward sharpish. I needed her there beside me to reassure me what ever the result, it would be fine. I could manage like she had, it didn’t change my thinking of this newborn baby only just over 24 hours old had a life of silence waiting for her.

My heart broke. My eyes stung like they was being tickled with stinging nettles. My throat formed a lump threatening to strangle me.
It was my fault.. She failed two more screenings.

Then she went onto another test, which went through any fluid or congestion in her ears, as she was a csection baby and early this was a possibility… Her tiny head was paired with two huge blue earmuffs, again she didn’t wince or startle. Blissfully unaware.

Failed – refer to audiology.

The audiologist apologised and said she will grab her diary to fit us in with an appointment the following Tuesday. (It was a Thursday). And that was that.

I waited until she left my cubicle, I was left with my mother standing beside me who’s face had turned red and eyes beginning to flood. I knew she was holding it in. Trying to be strong for me. Bless her, she’s not one for dealing with emotions.

I was given no leaflets, nobody to talk to after, nothing reassuring to read or success stories from the main investigation. Absolutely nothing – I was left bare with the unknown, just emotions and dreaded guilt…

Finding out that your precious baby, that you’ve spent 9 months lovingly growing and vowing to protect in your body, is some what not ‘perfect’ by the standard you are accustomed to is hard, you experience a range of emotions within seconds which isn’t ideal on top of your adjusting body, hormones, pain from surgery and tiredness from spending the first 3 days together with your newborn.

You’re hit with a pang of guilt, sadness and overwhelming feeling of protection. You blame yourself instantly and worry If your partner secretly does too. After all it was me she inherited her deafness from, I have made her life a challenge. I still live with that tiny guilt now, which prickles my eyes with tears when I think about it.

I thought to myself, was it something I done or could have done different while she was growing inside me, did I do something wrong? Should I have lifted that box? Eaten that thing I possibly shouldn’t have? Should I have joined yoga or take all these fancy supplements?
When in reality the life you spent your first few weeks on leave, dazing about what life she will have, Job she will do, what will her personality be like… Isn’t the life you originally planned, her path has taken a little different turn to what you originally dazed about.

After we was told Livy was needing to be transferred to audiology, with failing her screenings and needed a in depth investigation into her hearing loss. There was a 4 day wait until her first appointment, instead of enjoying the first week of her life I must have spent my days on google searching for things I could do, reading forums if the baby’s hearing came back and everything would be ok at the first appointment. I drove myself crazy. I didn’t want my beautiful little girl to face such adversity at such a young age.

I truly believe there is a grieving process when we are presented with what we perceive as ‘negative’ news about your precious little baby. With any challenge presented, it takes time to digest what you’re presented with and come to terms with the reality.

However time is something that cannot be spent mourning on your own feelings, within 6 weeks Alivia would be fitted with her hearing aids. It went so quickly, we had no chance to digest what was happening, what would happen and how we would bring up a baby, a child, to guide her into a strong independent woman. There is no space for slip ups.

With any aid your child is fitted with, unfortunately the parenting is not handed with a training manual. You’re on your own… Or so we felt.

Having sensory hearing loss myself, although not as severe as Alivia’s is, I want to express that deafness is not harmful, it doesn’t impose life threatening challenges and I cannot express it is nothing to be ashamed off! I spent years trying to hide my ears spending a fortune on hair extensions to hide from potential new friends or boyfriends. I didn’t want to be seen as weird, disabled or different.
I wanted to be accepted, liked and loved. Just like every other young teenage girl, I wanted to experience what they was. I so wish I didn’t waste my teenage years pretending to be something I wasn’t. I wish I had the strong attitude of, this is me. Take me as I am, or miss out on great loyalty.

Your baby is perfect, created perfectly and has a life perfectly planned. Now, as a parent it is upto me to ensure she feels perfect.

Perfectly normal, perfectly accepted and perfect the way she is. Don’t hold back, be proud of them.

In my next entry I will go into detail about her appointments at audiology. There are some lows and highs at each one, But we take each one as it comes. Also the challenges we face as she’s growing up.

LADDSYNDROME

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A little about me. 

At a young age of around 11, I was taken to a hearing test at my local hospital with my mother. I remember not really understanding why I was having to go through this, confused and quite upset. 

I sat and completed the test, where you press a button every time you hear a ‘buzz’ or ‘click’ through head phones. After, we sat together with a consultant, everything seemed abit fuzzy and my mother was crying uncontrollably. Admittedly I had no idea what was going on, nor did I have any understanding of what laid ahead of me. 

I had been diagnosed with moderate to severe hearing loss, and I was transferred to Great Ormand Street hospital and the Royal ear nose and throat hospital in London. For the next 9 years I frequently attended both of these hospitals for investigations, as to discover why I lost my hearing at such a later stage of my childhood. 

I struggled with being prescribed hearing aids at such a crucial age of 12, I was starting senior school –  which is a big mile stone in your life alone. Yet I was having to face people I went to junior school, with these new hearing aids that was a in the ear type mould and stuck out like a sore thumb. I felt humiliated, degraded, ashamed and I refused to wear them and took them out soon as I arrived at school. 

At the age of 16, I was finally diagnosed with LADD syndrome. 

* lacrimo-auriculo-dento-digital syndrome

This is an ‘extremely rare genetic disorder, only 50 cases since 1967 have been reported in the world.’ 

I have the typical characteristics of cupped ears, hearing loss, dental and eye problems, small thumb digits and my kidneys are affected by this condition. The syndrome can affect many other parts of the body. I am quite lucky to just carry just a few of the smaller characteristics. 

Alivia so far has been identified with the cupped ears, hearing loss and digits, she’s currently to young to be diagnosed with any other characteristics, these will be picked up as she gets older. 

What is it like to be a ‘normal hearing’ person, to live a life in silence? 

Firstly I want to express that those two aids that I held such a grudge against most of my teenage years, have turned out to be my best friends, my life and apart of me now. They have allowed me to lead a ‘normal life’, I can hear my son call me mummy. I can hear my partner tell me he loves me daily, I am able to tend to my children when in need, I am able to work and provide a living for my family. I am able to be what ever I want to be, with these. They may look or feel unpleasant. But they will be accepted as apart of you, by the people that are worthy to be in your life. 

I miss the simple things in life, all hearing people take for granted. 

The birds tweeting on a summers morning, hearing your siblings argue or your parent hoovering on Sunday mornings. The comfort of knowing what’s around you, swimming and hearing the delight of youngsters squealing, enjoying themselves. The feeling of awkwardness while in the hairdressers and having to take your hearing aids out to have your hair washed, the anxiety you feel when you have misheard someone and panicking they think you’re stupid. 

When you wake up without your hearing aids in, it’s almost like the world is on standby. 

Dead, Motionless and lonely.

It is my absolute mission to empower Alivia-Ellen, so she doesn’t spend her days feeling so down about her special difference. I want her to not look at life like its an obstacle, but just a hurdle she can succeed but in a different way to others.

ABILITYINEVERYDISABILITY

 

34b27454-e450-4591-a4d8-cbbfd3673288Sometimes you just have to stop and be thankful for life having different plans for you, than I had planned for myself. I have been blessed with a miracle. Being a parent to a baby born with a disability, in a nutshell is – 

a circle of emotions on repeat.   

At first I felt awful and blamed myself for the diversity she will face in her life, I wasn’t sure I could adapt to parent her and cater her needs, but motherhood is such a powerful beautiful thing. I’ve learnt to cherish and admire the person she is becoming, not who I thought she would be, whilst developing in the womb and fantasising how her life will be (what wasn’t meant to be.)

I feel lucky that In fact she has turned out to be the teacher of my life, turning me into the best version of myself.

My aim in writing this blog, is to provide comfort and reassurance to young, new, experienced mums who discover their baby has a form of disability, like i did myself. 

I will cover in detail the beginning of our journey. I just wish I had something inspiring, comforting and reassuring to read after being told my daughter had failed three newborn hearing screenings, facing a life of profound deafness. I laid there with my less than 48 hours old daughter, sobbing in my cubicle, clutching her tiny 5lb 2oz body to my chest feeling to wrap her in every ounce of comfort and protection I could provide. 

Gently whispering, ‘I’m so sorry’…  

Throughout this blog you will notice I am a FIRM believer in this quote:  

‘There is ability, in every disability’. 

x

Welcome

e6e02373-7576-4f50-8d47-2ffa5be06d1b

 

A late twenty something mother of two boys and a profoundly deaf diva of almighty sass.

in between splitting spontaneous sibling wars, curating pillow forts and channeling inner superheroes, mothering Silence documents a brutally honest truth of the trials and tribulations of motherhood.

(The toughest hood)

Here you’ll find my weekly ramblings of the rollercoaster life of motherhood.

x