Attack of the green eyed monster

Envy - feeling of discontent or covetousness with regard to another's advantages, success or possessions

. 

Yup. Pretty much sums up how I have felt the last few days. Seeing other kids getting their surgeries done or have their surgery booked whilst we are still no where near that point has caused a major attack of the green eyed monster. 

It's a terrible feeling and one that I wish I didn't feel. I could pretend that I dont, but that wouldnt be honest. It really is something I am struggling with right now. 

Microtia kids are a rare breed and us parents need to stick together, so harboring feelings of resentment really does the situation no good. 

Aaliyah is nearly 15 kgs, the weight she needs to be for the surgery. Therefore, the ONLY thing that is holding us back is finances. I HATE IT. I hate the whole situation - not having the money, having to ask others for money, having to fill out requests for donations only to be knocked back. 

Before we had Aaliyah, we had our house deposit saved. That reserve is now gone. Between Jose going back to study and Aaliyah's unexpected medical bills we chewed through that faster than one would like. I am forever grateful that we had that reserve, who knows where we would be if we didn't. 

We are not in a position to borrow money. And that is fine, it really is. We would hate to be in debt. 

There are so many factors that we cannot control and many things we lack but here are a few things we can control and things that we have in our favour. 

1. Our Attitudes . How grateful we are for the support we have been given. For the love shown to us and to our girls. For the fact that despite her Microtia, Aaliyah is an otherwise healthy 3 year old girl. We have her here with us, a privilege denied to so many parents. 

2. Our Time. I have the ability to work shift work. How grateful I am that I have a job that I can work around family life. Aaliyah and her sister are (for the most part) wonderful sleepers, sleeping 12-13 hours every night. This gives me plenty of time in the evenings to prepare documents, write to organisations and try and source new ways of fundraising. I have to be honest and say that wise use of time has not always been a strength of mine and something that I struggle with. I am slowly learning how to use it more wisely and am setting weekly goals I want to achieve in regards to the administration side of things. 

3. We have support. Arghh. I am planning on writing a post about this. Our support network is nothing short of incredible. What we lack in money we make up for in support. Family, friends, online, Hear and Say - We have been so blessed to be surrounded by so many wonderful people. I need to make sure I am doing my best to honour them. 

4. Determination. We have determination. As soon as we realised that this surgery was going to be the best option for Aaliyah not once did we let the price tag put us of, instead adopting an attitude of "we will do it". So many times as parents we say "I would do anything for my child". Well, this is our "anything". 


In a way it is a blessing that others are going before us. We can learn from them. Where to stay, what attractions are worth seeing. Best mode of transport. How their child went post op. 

I hope this green eyed monster buggers off soon, I have had enough. 

Confessions......

Thank you all for the kind thoughts and well wishes with Aaliyah's CT. Everything went well and she coped with fasting better than I expected. I guess as parents we struggle more than they do, she was just going along for the ride. Happy to have rare one on one time with Mama and free use of Nana's iPad!!!!

So someone asked on FB how I am doing?

The truth be told I fail daily. This parenting gig is hard. They tell you all kinds of things when you are pregnant. You know, that you will be tired, that you will feel like pulling your hair out. And you smile and nod and go, not me, not my child.

I now smile at the pregnant mamas at the shops, or the ones with newborns. The ones that look at me in disgust when Aaliyah is screeching at the top of her lungs because she wants to look at the barbies NOOOOOWWWWWW, and her sister is busy throwing everything I put into the trolley out. I know their turn will come, until then I will let them remain in their bubble!

Towards the end of last year I teetered dangerously close to a break down. I am not afraid to say it. I think it is very therapeutic in fact to be able to talk about these things. Yes, I do realise that this is Aaliyah's Journey blog and not Amy's Journey blog, but you will understand why I am saying these things in a minute.

You see, I had spread myself too thin. Wife, Mother, Advocate, Student, Bread Winner, Chief Homemaker and Housekeeper, Fundraiser. Fortunately I was able to have 6 weeks annual leave (from work, not life!!), Uni finished for the semester (and I made the decision to not re-enrol, my sanity is more important than my degree) and for the most part of those six weeks I only did the very basics of housekeeping. We did a whole lot of nothing, just what I needed.

Unfortunately this came on the back of one of our biggest fundraisers to date, our trivia night. So whilst I dutifully wrote out the thank you cards, they were never sent. And I haven't done much fundraising since. Nearly six whole months has passed with not alot happening.

The guilt I feel is incredible. Its weighing me down. Aaliyah's surgery will not pay for itself. Those kind people that have donated goods, services or money deserve a proper thank you. Gratitude means so much in this harsh world. I have let others down.

So, Im turning a new leaf. A new season. Back to fundraising, back to actually sending out the thank you's I write. Back to being the Mama my girls so desperately deserve. Back to treating myself and my body the way it deserves.

Plans are in motion people. I will get there, we will get there.

So, THANK YOU. THANK YOU. THANK YOU.

For loving our girl enough to give up your time, money and goods to help support her, even when her mother has been slack. I do not deserve it, but she sure does.


I have now turned my attention to organising our next trivia night, letters to local clubs and trying to source donations from major corporations.

(side note: our plan is for Aaliyah to have her surgery next northern summer, so June/July 2014, we have a long way to go with fundraising, but be sure, we will get there... I am back and more determined than ever).

Acceptance

I remember when I was 21, studying my nursing course, I bought a "Hear and Say" butterfly as a part of their Butterfly appeal. I remember, "Thank Goodness I will never have a child with hearing loss, those poor parents and children"

Oh the IGNORANCE!!!!!!

As a silly, naive 20 something, I thought that those type of things only happen to other people. I don't really know what made me think I was so special that it wouldn't happen to me or my family. I still have that butterfly. I am so glad I kept it. It reminds of who I was, and who I want to be.

I have come to a place in this journey of Acceptance. You know the stages of grief. Denial. Anger. Bargaining. Depression. Acceptance.

The road to acceptance hasnt been easy. But I guess that's the way it was always going to be.

Denial:
Those first few days in the hospital. A time when we should have been celebrating the birth of our first born. The first grandchild on both sides. Instead we worried. We were told all kinds of horrible details and no actual details on her actual condition.

Jose and I came to the conclusion that if we worked on her ear it would open up. Denial. We thought of all kinds of ways in which we could improve her ear. We seriously thought the doctors were crazy when they said she had no canal. Its actually laughable now, but at the time it was very raw and very very much real.

Anger:
Oh. Anger. That was not a nice place to visit. Anger at God, at myself, the universe and even at poor little Aaliyah. Yes, I said it. I was angry at her. Why could she not have been born perfect like all my friends babies. Anger and I had quite a lengthy visit. My poor husband. My poor daughter. My poor family. I was not particularly nice to be around. Thankfully Aaliyah was too young to realise, and I have a very loving and forgiving husband and family.

Bargaining:
This is a funny little stage to be at. Especially when coming out of the anger phase. I almost had myself convinced that I had accepted everything. Looking back I realise that alot of my conversations started with "well maybe if we do this, then...." Good one Amy. You cant bargain with life silly girl. Funnily enough I didnt bargain for long, the old black dog, Depression was eagerly waiting for me.

Depression:

I think I stayed here longer than all the other stages combined. The culmination of all my grief. The overwhelming sadness that consumed me. Sadness for what I thought it was going to be like. Sadness for what I "missed out on". Big, heart wrenching sobs. A melancholy so hard to describe. I had to stay there. I needed that time. To work through things, to process, to understand, to accept.

I mourned the loss of the child I expected. The delivery I felt I deserved. For what I thought she would miss out on.

Please understand me when I say these things that it in no way, shape or form reflects on my love for Aaliyah, only my personal struggles. Aaliyah held my heart from the first time I saw her beating heart on the ultrasound (probably even before then).

This was just a process to get me to where I am today and that is:

Acceptance:

What a freeing place acceptance is. I am so glad it is the last stop on the grief train. I actually like it here. And do you want to know something crazy? I am grateful for Aaliyah's Microtia. She has taught me so much. To look for abilities not disabilities. I now know what it feels like to be "on the other side". And I quite like it there, thank you very much.

Over the past few years, I have had the honour and privilege of knowing some of the most inspiring people. I have learnt who my true friends are. You know, the ones that stick around when the going gets tough.

I am so grateful for this whole experience. It has fundamentally changed me as a person. But how could it not. In some ways I wouldnt change a thing.

Yes, I wish with my whole heart that Aaliyah had been born with 2 hearing ears. But if she had, then we would have missed out on so much - friendships, experiences.

So that is where I am at. Grateful for our journey. For our Microtia community. For our family. For our faith. For so so much.

Acceptance, I like you alot.

 

Hadassah - the girl that healed my heart

*I want to preface this post by stating that JUST BECAUSE Hadassah healed some old wounds from my pregnancy/delivery/first few months with Aaliyah, does not in any way, shape or form have any reflection on my feelings towards Aaliyah. I love that girl with all my heart and soul*

(38 weeks with Aaliyah)

Everything about my pregnancy/labour and delivery with Aaliyah  and the first few months we so far removed from what I had planned in my mind. Granted, nothing in life goes to plan, but mine was so far removed it now seems almost ridiculous. 

(First proper cuddle in special care)

I have previously written a whole post dedicated to my pregnancy with Aaliyah as well as her very traumatic birth. Needless to say I was a little (ok ALOT) cautious when it came to my pregnancy with Hadassah. I spent the first half of my pregnancy begging the Obstetrician to allow me to have a caesarean section. Needless to say that didnt happen.  

(Aaliyah in Special Care, soon after she was born)

I never realised just how healing Hadassah has been until more recently. I didnt realise the resentment, guilt and anger I carried either. She really is the girl that healed my heart. 

(Pregnant with Hadassah)

With Hadassah I got "the glow". You know, the one people talk about that happens when you are pregnant? With Aaliyah I looked like I had been starved for the last year. My pregnancy with Hadassah was much more normal. Besides a little preterm labour incident, her pregnancy was relatively drama free. 

(Aaliyah and I at my baby shower for Hadassah)

I will never ever forget holding her in my arms for the first time. I kept saying over and over and over " I just had a baby". I kept waiting for the bad news to start. Waiting for them to take her away from me. Waiting for me to pass out, waiting waiting waiting. Nothing. 

(moments after Hadassah was born)

Hadassah stayed on my chest for a good hour before they even weighed her. I was completely blissed out and almost forgot that I had had her all natural, not even gas (something that I NEVER thought I would ever do, I hate pain and always planned to have an epidural with every delivery). 

I remember walking up to the ward with her, thinking "oh my goodness, so THIS is what it feels like". To be normal. To have a baby stay with you. To have a baby that doesnt have some form of abnormality. To be left to bond with my baby. 

They did a hearing test on her, but I refused to photograph it. My thoughts at the time was that Aaliyah didnt get the chance so I dont want any evidence that Dass did (yes, I regret it). 

I remember being discharged home a few days later, with little more than "make sure you follow up with your GP in six weeks, good luck". It was AMAZING. 

The bond that took me a good six months with Aaliyah was almost instant with Dass. I guess it really does prove that how things start out can really dictate how well the mother bonds with the baby. (I want to say right now that just because I didnt BOND with Aaliyah straight away, doesnt mean I didnt LOVE her with all my heart, we just had so much going on with Lia that the bonding took a little longer). 

And home we went, just the four of us. No appointments, no fear. I was relatively well, and was able to just "get on with it". 

Healing. From the hurt I never realised I carried. From the pregnancy and delivery that rocked me to my core. I have tears in my eyes just thinking about Aaliyah's birth story and first few months. They will always be a part of her story, of who she is. And I have finally come to a place of acceptance. That even though it was traumatic. Even though her Microtia was unexpected. It was beautiful. It gave us her, the girl that made me a mama, the girl that made us a family. 

Healing. It can come in many shapes and sizes. It can take a long time, or just a little. For me, it came in a 3kg bundle of love named Hadassah. 

Aaliyah made me a mama, showed me that there can be beauty in the unexpected. That even though we may not be on the path we intended, the scenery can be just as beautiful if you happen upon a different way. 

Hadassah, the girl that healed my heart. That showed me that even after the darkest of storms, there will be a rainbow. That looked up at me with the darkest of all eyes that seemed to say, everything will be alright. And it is. 

Healing. To be made whole. 

And these two girls are my whole world.

This Week

we have been: 

playing with friends

Enjoying Playgroup, Ballet and Music,

Went to the Library

Learning through play 

(any one want to buy me a dishwasher??)

 Enjoying visits for our family 

And then recovering from Colds and Asthma....

Sorry I haven't posted about Aaliyah and Hadassah's relationship, but we have been busy - playing, visiting, exploring, learning and dancing. 

xxx

Realization

I was a naughty child. Not in a bratty way, more so in a tantrum for hours kind of way. It started when I was around 2 and didn't stop until I was close to 11. My behaviour was a mystery to everyone. Both my sisters were well behaved. I was contrary child and extremely strong willed.

(Im the middle one, with my neighbour Ben and older sister Bec)

I was put on every diet you could imagine - lactose free, gluten free, no yellow foods, no this, no that. My tantrums were so bad that the people that lived in the house behind my parents sold up and moved. Yes, I was that loud and annoying. The last week of every term at school, teachers requested that I be kept home as my behaviour disrupted the class.

(Front row, third from the left)

I saw just about every doctor in Brisbane trying to figure out if there was ANYTHING in the world that could be causing me to act out the way I did. Hearing tests, blood tests, behaviour tests, tests for ADHD and the likes. Nothing was ever found.

That is until my parents sent to to a psychologist, who did a few simple tests and found out I had an Auditory  Memory Disorder. Basically, my brain could not remember instructions and information I was told got scrambled. Its something I still struggle with sometimes even now. With the right intervention (teachers providing one step instructions as well as written material) my behaviour changed. The girl that could tantrum for hours was finally gone and after years of disruption peace was finally restored to our household.

So, what does this have to do with Aaliyah? Aaliyah is a strong willed child and is like me in so many ways. Imagine if you couldn't distinguish where a sound was coming from. Imagine your balance always being a little bit off?

Do me a favour. Cover one ear with your hand and block of your canal. How does it feel to have muffled sound on one side? Strange isn't it. Now try and imagine that there is NO sound coming from that ear. NOTHING. EVER.

And that friends, is the world that Aaliyah lives in. One that turns a shopping centre from a place of adventure into a place of unknowns. One where if her hearing ear gets blocked during a bath, renders her completely without sound. One that trying to distinguish where the car is coming from when trying to cross the road becomes that much harder. One where trying to understand what someone is saying to you in a crowded room becomes near impossible.

So often I forget about Aaliyah's "impairment". And then she acts out in the shopping centre carpark, and I tell her off, forgetting what a scary place it must be for her. Telling her of for not listening, when in reality, there is a lot of background noise, her hearing aid battery has run out and I'm in a different room. Explains why sometimes she acts out. Not out of disobedience or defiance, just out of frustration.

And that is why we are working so hard to give Aaliyah what you and I take for granted. x

Fundraising

As I said in my last post, I want to go into further detail in our fundraising plans for this year. We have big ambitions this year and with a lot of hard work and discipline I know that with your help we can achieve it. In November last year we held a trivia night. It was a huge success, raising close to $6000. We have so many people to thank for helping put that night together and making it the success it was. Pretty much everything was donated on the night from the hall hire, chips for the tables, prizes and auction items. We had my parents neighbour do the auctions as that is what he does for a day job and friends that run trivia nights on a regular basis run the trivia. The only downside was that it was pouring rain, was stormy and we forgot about a PA system. We sold nearly 100 seats and it seemed to go very well. I want to say thank you to every single person and business that donated or contributed to the night in any way. It would not have been possible for our night to be such a success without YOUR help.  I will post photos as soon as I get my hands on some. I was too busy on the night to take any but my sister took some so I will endevour to get them of her.

Because the night was such a success we are planning on holding another Trivia night in April. If you are interested in helping with the night or coming please shoot me an email (amyjperdomo@hotmail.com) and I will be in touch.

Now on a different note, I want to talk about our special Microtia/Atresia community. We are so blessed that Aaliyah was not born a few years earlier. The services and information that we have access to now were not around a few years ago (by a few years I mean in the years before Aaliyah was born).

Ten years ago, children like Aaliyah had limited options. They were not offered hearing aids, not offered speech and language support. Their parents were told to go on with life as normal. If it wasn't for people like Simone from the Hear and Say (Hi Simone, I know you read this), as well as places like the Hear and Say centre, we would be lost.

Its funny, when Microtia/Atresia parents get together the conversation can go a little like this :

Hi Im Amy, my daughter Aaliyah is 3 wit right sided Microtia/Atresia
Hi im Jane and my son Jon is 2 with bilat Atresia

There are so many different types of Microtia/Atresia. It is facinating and daunting, no wonder the Doctors in Australia do not know what to think!!!!!

And that my friends is my 2 bobs worth this Wednesday night.

Oh and I will be entering Aaliyah into Sunsuper "Dream". competition. It is a votes based competition, so I will be all over facebook asking you to vote and share. If Aaliyah wins Sunsuper will donate $5000 towards Aaliyah's operation.