Being a mum is hard.

Miss A is having surgery today. Grommets, adenoids and tonsils. And I am freaking out just to put it lightly. 

We had to be at the hospital by 7:30am – I then had to answer the same questions to at least 4 people and then just after 9am I’ve given her a Kiss, whispered I love you in her ear and left her in the hands of her ENT. 

She didn’t wake up on the way to the hospital or during any of the pre-op stuff. So that’s hard for me know she doesn’t even know we are here. She is expecting to wake up in her bed just like she always does but today that’s not the case. Today she is going to wake up confused and sore. I can only hope a mothers love can ease some of that. 

I was reassured when her ENT come bouncing into the room prior to her being put under to talk me through the surgery once again. Then he left and it was real and scary and as they put the gas mask over her face and her body began to react and stiffen. It was then I was told one more kiss and I would need to leave. It was then I couldn’t hold it in anymore and I felt tears running down my face. 

So I’ll now sit in the waiting area for the next hour or so until they call me into recovery. Pretending I’m a big brave girl and thinking positive thoughts. 

  

Anxiety

I woke this morning in panic and struggling to breathe. Since Miss A’s diagnoses I’ve struggled with Anexity 😔. I hate that it has such control of me but I feel helpless in knowing how to beat it. 

With only a vague memory of the dream that awoken me from my sleep.  I try to gather my thoughts as I focus on my breathing. Although I don’t know the specifics I know it was about Miss A’s pending surgeries and it wasn’t a positive dream. 

This was my realisation, my “wake up” call. I have a mere 4 days until it’s going to happen and until now I’ve not really allowed myself to much time to process and think about what’s going on. I have been able to keep myself busy in the hope I wouldn’t freak out but apparently that reality was unavoidable 😥

Originally the 25th of June was going to be “D” Day. The date in which I would have had to finally make up my mind as to whether we would be going ahead with the Cochlear Implant but due to other factors our ENT postponed the CI and replaced that surgery with another. 

Prior to that day I had played out the situation where I either said no or postponed CI surgery and in my mind there was relief and a weight that was lifted although in the reality of it happening this was not the case – I had a split second of relief followed by a wave of panic (just like the way I felt this morning when I woke.). It appeared that it was inevitable that my baby girl all of 3 years old was going to have surgery. It was no longer the “When” question lingering in my mind but the “Which one first” I had no control. I had choices but I didn’t like them. So no wonder I just tried to push all thoughts of what was happening aside 😢 

And that brings me back to why I awoke the way I did this morning. My subconscious knew I needed to get my head around this before Thursday – Obviously there was no way I could actually avoid dealing with this. My head doesn’t work that way and it never will. 

Yes I’ve now admitted I am scared. I’m actually terrified and my fear is consuming but I know I have to try and block it out and stay strong and being strong has nothing to do with me. It’s about Miss A. She needs to feel safe because the last thing I want is for her to take on my fear. I have to stay positive and remind myself everything will be okay. My fear is normal – a natural response but I can’t allow it to consume me. 

(I’ll keep reminding myself of this until one day it’s my default mode.)

  

Wow. I could cry.

I just had to share this message & picture one of my beautiful friend sent me tonight. 

I honestly think everyday I must seem like a mess to the outside world. I’m always doing a million things and often feel as though I’m not doing any of them “right” but hey maybe just maybe I’m not as big a mess as I think I am. Who knows. 

Anyways a huge thank you to my friend “Z” you made me smile and I could possibly cry. 

The stuff you do for you kids you amaze me. Your life ain’t easy but you never make that impact what you have to do day in and day out 

 

Auslan Coffee & Chat

This morning I attended my first Auslan coffee and chat with Miss A. I was grateful that several other students were in attendance as well as Miss A’s speech/sign therapist. 

To start it was nerve racking being around so many Deaf people with their beautiful and fluent language – I felt as thought I was signing everything wrong and my nerves made my finger spelling quicker then normal (I think)  in hope that if I made a mistake no one would catch it. 

But my nerves slowly dissipated and I really enjoyed it. It gave me a chance to do some practise Inbetween  weekends for my course. As well as practicing myself I was able to watch others signing and make sure I can recognise the signs and better understand the structure of the language. It is so beautiful to watch. I watched a young hearing man clarify to his girlfriend what he was signing as his “cold” looked some what like “bath” I smiled. This was a safe environment, it was okay to make mistakes – mistakes are part of the learning process.  
Miss A was quite a lot of the time, taking everything in. I wish I knew what she was thinking. She signed to tell a few people her name. Beginning with her hands under the table (obviously nervous herself) then by the end signing as she always would. 

It was amazing & I am very much looking forward to going again next month 🙂 

Language

This post gave me goosebumps because it is true people often open their mouth before then fully think through what they are about to say.

There are always going to be times like this – When someone says something insensitive and makes your blood boil. But what makes you better then them is the way you handle it and sometimes (from experience) I know its harder to keep yourself in check then others.
It is just a matter of staying strong.

LVAS

Large vestibular aqueduct syndrome (LVAS) – A guide to Hearing Loss

This long sounding name is given to a condition in which the certain structures within the inner ear become swollen and enlarged. This can result in fluid flowing back into these structures which causes hearing loss. What is the ‘vestibular aqueduct?’ There is a bony canal (the ‘aqueduct’) that runs through the skull, connecting the cranial cavity to the inner ear (the ‘vestibule’). And within that canal is a tube called the ‘endolymphatic duct’ which runs through this aqueduct to a collection pouch called the ‘endolymphatic sac’.

This duct contains a fluid called ‘endolymph’ which travels through this duct to the sac – hence the name. This fluid normally passes from the inner ear towards this collection sac.  But if both this duct and sac become enlarged then this forces the endolymph back towards the inner ear where it affects balance and hearing.

How does this cause hearing loss?

No-one is exactly sure how this causes hearing loss but several theories have been put forward which include:

• Endolymphatic fluid may be too concentrated and damages fine hair cells within the inner ear which results in sudden hearing loss.
• A minor head injury causes changes in air pressure within the ear, causes a tear in one of the delicate membranes in the inner ear which permanently damages hearing.

Causes of large vestibular aqueduct syndrome

This is a recently discovered condition so there is much more to learn about the exact causes of it. But experts now believe that this condition actually starts in childhood when the ear structures are still developing which makes them vulnerable to disease or injury.

Other possible causes include damage caused by a head injury, increase in cerebrospinal fluid during exercise or physical exertion or changes in air pressure within the ear. At present the only way of diagnosing this condition is via a CT scan.

The most obvious symptom of large vestibular aqueduct syndrome is that of hearing loss. The extent of this loss will vary between individuals and in some cases there will be complete hearing loss (permanent deafness).

Treatment of large vestibular aqueduct syndrome

As long as there is still partial hearing then there is one form of treatment available which is a hearing aid. Any hearing lost cannot be restored but at the very least this will enable the sufferer to maintain their current level of hearing and communicate with others. However, regular hearing tests will be needed to check for signs of any further deterioration in hearing.

DEAF not DUMB

A little insight into Miss A 🙂

Well as I mentioned Miss A (3.5 years old) is Deaf and in my opinion has been since she was about 9-12 months old (after an acute illness and 2 hospitalizations) although I will never really know. We didn’t have it confirmed until she was 2. As it stands today she is profoundly Deaf in her right ear and Severely Deaf in her right. Her remaining hearing could go at anytime as she has a condition called LVAS. She wears adorable pink hearing aids with pink and purple moulds. Her first language is Auslan but she is slowly starting to speak more and more as time goes on.

Some parents find the word “DEAF” hard to accept and prefer the term “hard of hearing”. I am not really sure why but sometimes when I listen to them talk or read their stories in forums I begin to think it comes down to the same stigma Deaf people have been living with throughout history and that is the idea that “Deaf = Dumb” and they don’t want people thinking that of their child.
I am sorry but that isn’t the case one little bit. Yes my daughter is Deaf, she is the only Deaf person I am aware of within the family but that doesn’t make her dumb, it does however mean that her speech and language are delayed but that’s her only delay. She is still a regular 3 year old girl who love dolls, makeup, dressup and talking on the phone. She is not in anyway lacking in quality of life and the things she for lack of a better word “misses” due to being unable to hear she makes up for visually. Her world may differ slightly from her hearing peers but I can tell just by looking at her she doesn’t mind one bit.

Hello world!

I am a strong believer in the fact that everyone is living their own battle one day at a time. Although in the grand scheme of things we could rate them on a sale but would that be fair?
I sit here sometimes at the end of my rope not know what to do next and then feeling pitiful because I know there are so many other worse off then I am but the truth of the matter is I am not dealing with their struggle I am dealing with mine and it is REAL and it is HARD and I do STRUGGLE.
Some days I am stronger then I thought I could be and other days I dont know if I can push myself any further. We all have those weak moments. But I wake up everyday and I do my very best and really what more can I do???

I have had numerous people tell me a BLOG would be a great release and in a way my own kind of therapy but something I just never got around to and now I kick myself for not starting sooner because the last year and a half has been hard. Although to be completely honest the past 4 years have been rough and some days I just don’t know how I have managed. So I am hoping this is a place for me to vent when I need to as well as keep a record along the way 🙂

Anyways it would be impossible to fit the whole story in one post before beginning this blog so I think if I start with a brief intro that might be enough.

I am racing towards 30 faster then I want to but this fact I am trying to ignore. I am about to move into a new house after living with my mother and brother for several years (Due to personal circumstance) so I am nervous but most EXCITED about that. I have epilepsy – Once upon a time it had control of me but these days I am pretty confident I have control of it. I’m an insomniac with an anxiety condition and I think those last two factors stem from the fact I am for all intensive purposes a single mother of 2. I am a stay at home mum because I honestly do not have the time for work unfortunately. I am currently studying Auslan and hope that maybe one day I will be good enough to become an Auslan interpreter.
My kids are amazing, and I love them more then life itself. Everything I do is for them and I try my very best everyday to give them everything they deserve and so much more.
Master B who will be 10 this year – He is a bright kid who has a kind heart.
Miss A – Now Miss A is why this blog has come about. She 3.5 years old and AMAZING. She is the complete opposite to Master B. She is bossy, strong willed and moody. She is also loving and clingy and Deaf. (But that’s a story for another post)