Friday, 29 March 2013


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.


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).

Monday, 25 March 2013


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.

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.

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.

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.


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:


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.