Q & A

I thought it was about time I did a Q and A for any new followers of Aaliyahs Journey, to answer any questions you may have and for you to get  to know the family "behind the screen".

I guess the number one question we get asked when we tell people about Aaliyah's surgery is "why the states?". After seeking the advise of MANY health professionals, not just from Brisbane (where we live) but around Australia, we were not satisfied that they would give us the results we were looking for for Aaliyah. One doctor told us to "chop of whats there and put a plastic one on". One told us that we should not touch it as it should be Aaliyah's decision if and when she has surgery. None were able to answer our concerns of Aaliyah starting school, not only with an abnormal looking ear but with a significant hearing impairment.

We were so fortunate when Aaliyah was born to be linked in with a Hearing Loss Support Network. A lovely social worker visited us at home and gave us some options in regards to support available for Aaliyah. She also told me about another little girl that was born with the same condition as Aaliyah and gave me her mothers phone number. It took me a few weeks to get the courage to call her, but we are ever so grateful we did. That was when we found out we had options for Aaliyah. We wear able to link in with  The Hear and Say Centre.

Aaliyah with Dr Roberson and Dr Reinisch, The doctors that will help restore her hearing and give her a normal looking ear,

Making the decision to fly thousands of kilometers wasnt an easy decision. We have done our research. Consulted many, many Doctors. We have looked at our options in Australia. No one was able to give us what the Combined Medpor/Atresia Repair will give Aaliyah. I asked Aaliyah's ENT (Ear Specialist) why he doesn't perform it and his answer was simple. Microtia is too rare and the surgery too complicated to make the surgery financially attractive. In other words, there isnt enough money to be made.

We have a tentative booking for August 2014. Ideally we would love for the surgery to happen before then. She could actually have the surgery now, however we do not have the finances to make that happen. We are so determined to make it happen by August 2014. 

We have to be in California for 6 weeks, in order for Aaliyah to attend her various follow up appointments. We have have chosen (in collaboration with the Doctors) August next year for several reasons. It is the northern summer. As Aaliyah suffers from chronic Asthma, we felt it was important for her to be travelling/having her surgery when the weather is warmer. Hopefully this will avoid any possible Asthma Attacks and subsequent hospital visits. 

I also wanted to clarify that whilst we are fundraising for her surgery, the airfares and the accomodation, we are NOT fundraising for our meals/living expences/spending money. We are intending on visiting Disneyland etc whilst we are there, however we are not raising money so we can "have a holiday". 

The change in the exchange rate and the increase in the surgical fees means that we have had to up our origional goal of $90 000 to $100 000. We have looked at our expected costs as well talked with other families that have had this procedure and this figure seems to be the average. 

I hope this answers some the questions you may have. I have been working on a post regarding fundraising, what we have been doing and what you can do to help, hopefully it will be up soon!! 

I am also wanting to post about the Microtai/Atresia Conference, more about the actual surgery as well as how living with Microtia effects Aaliyah's day to day life. 

Also, in case you missed the link on Aaliyah's Facebook page, 96five have run Aaliyah's story on their radio station. There was some technical difficulties with the podcast but hopefully it should be up soon. I will post photos on her facebook page tomorrow when we go and meet the radio crew!

There is so much I want to write about, to tell you all. 

About our wonderful support system, those that comfort me when I am ready to give up, our family and friends that have been their through it all. I want to tell you about the bitter sadness and disappointment we have felt when we have had our applications and pleas for funding knocked back and people that have said they would be there for us, seem to disappear when we have needed them the most. 

I want to tell you about have parenting a child with a hearing impairment has changed me, for the better. How hard, how rewarding it is. 

I want to tell you about how lost I feel about fundraising and yet so determined and blown away by the support and generosity of people near and far. 

I want to share with you how I feel about being a working mum and how hard I find it. I feel like it it makes me a second rate mum. Mostly due to tiredness, shift work really takes its toll on me. And nursing is not only physically draining but mentally and emotionally draining as well. 

I want to tell you that despite all the ups and downs, Aaliyah is thriving. She is busy, oh so busy, being three is very hard work you know!!!! Her and her sister fight like crazy but are the best of friends. 

I want to share with you more about Hadassah, our cheeky little monkey that has healed so many old wounds. 

I want to tell you how grateful I am for all of the love and support we have felt over the years. 

I want to share our next fundraising adventures with you, as well as recap some of our old. 

I want to tell you more about Microtia, and the amazing surgeons that are going to change our little girls life. 

But life has been busy. I have been tired. Overwhelmed. Feeling defeated. 

I do not go on the computer at all during the day, my priority lies with my girls.They do not attend daycare, so unless I am at work they are with me. And thats the way I like it. But it doesnt leave me much time to work on her fundraising during the day, Im flat out getting the housework done.  And the evenings seem to fly by, between working some evenings (or overnight), general clean up and folding the never ending baskets of laundry, I am left exhausted.

I need to get back to writing to the media/sports clubs/anyone that might help. I need to get back to blogging and spending time searching for more fundraising options and opportunities. No more excuses. Aaliyahs Journey is back. With a renewed determination. 

So watch this space. Big things are coming. I just know it x 

Trivia Night Recap

Our night started of like a comedy of errors. We had 2 hours of set up time from when we had access to the hall until we were expecting our guests to arrive. We thought this would be plenty of time as this was the amount of time we had the last time and had spent the 30 minutes in the lead up sitting twiddling our thumbs. Alas it was not to be. Bringing the carloads of things needed took longer than expected, three of our helpers were sick and we also had a 3 year old and 21 month old running around!!!!!! 

Needless to say it was most definitely a last minute scramble to get things organised. But we did it. People started arriving, and it was then that we found out that all of the pens I had brought with me didnt work. So we had people registering with a colouring in pencil. I can giggle about it now, but on the night I was STRESSED to the eyeballs. Thankfully we had some wonderful people step up and help us out, and even though things didnt go quite to plan, the evening went quite well. 

It was so nice and so very humbling to meet some of the people that support our Aaliyah. People that we do not personally know but just felt compelled to help. We continue to be blown away by this. One lovely lady (Marguerite) had her church group fundraising for Aaliyah for the last year and handed over a cheque for $700!!!! Another came with a donation of 10 pass boot camp (thanks Dale and Ripple fitness). 

It was equally amazing to have some of our dear friends there. The ones that have been there for all our fundraisers. Always supporting us. We have been incredibly blessed by our wonderful friends. The age and stage that we are at at the moment means that most of our friends are either newly weds or have young families. We understand the sacrifices that some had to make to be able to be there to support us. 

We had over 110 trivia players. It was an amazing site, all there to support our Aaliyah. Just over $6500 was raised. An incredible amount. 

I asked people if they had a good time and they all seemed to, with many asking when the next trivia night will be, so that is always a good thing. The meat tray and fruit trays proved to be popular raffles. And a lot of laughter was heard throughout the evening. 

Thank you, to you all. Those that donated to the prizes/auction items/raffles. Those that bought tickets and attended the trivia. Those that put in hours baking and preparing for the night. And those that stayed behind to help clean up. 

Thank you to Simone for coming and sharing Chelsea's story. You are such an inspiration to me and I cannot put into words how much it meant to have you there to support us. 

We got home after midnight with two very overtired little girls and grateful heart. The end of our evening was even a comedy of errors, with both girls screaming the whole way home, and then poor Aaliyah wet her pants so we were taking out car seats and cleaning them at 1am!!!!! Life has a way of keeping us humble!

(Im sorry this post is a little later than I would have liked and a little all over the place, but Aaliyah has been battling asthma again (thanks to the cold change) and her sister Dass has a chest and throat infection, and I have been getting 2-3 hours sleep as a result, that and I have spent the last two evenings scrubbing my house as the newspaper photographer is coming tomorrow and its bringing out the perfectionist in me!!)

A Letter

Dear Aaliyah,

One day you will be old enough to read this blog. You may read some things that confuse you, upset you or uplift you. Know this baby girl. Are are and always have been loved. 

From the moment we found out we were expecting you, you had our hearts. You were a fighter from the start. Even your rough start to life has not slowed you down one bit. 

My darling girl, you are so strong, so brave and I am so so proud to be called your Mama. Your smile is infectious and you know how to work a crowd. You are strong willed, something that can make me very tired some days but I know this will serve you well as you go into your teenage years and beyond. 

You love anything girly - princesses, dancing, dress ups, dolls and barbies. I wonder if this will continue? 

Your eyes take in everything around you. You do not miss a beat. Always questioning, always wondering. It is so much fun seeing the world through your eyes. 

At 18 months old, you became a big sister. You handled this transition so much better than I ever thought you would. You love Hadassah so much and your bond is incredible. I pray this continues. Remember, you may have your disagreements, but as sisters you will always love each other. 

Aaliyah, the girl that made me a mama. You have fundamentally changed me. For the better. You have changed all of us. Mama, Daddy, Nene, Pip, Nana, Nono and all of your Aunties and Uncles. You are so so loved by so many. 

All the tears, the highs and lows, have all been worth it dear girl. You have the ability to make me smile when everything seems to much. Your honesty keeps me in check and makes me strive to be a better Mama. 

Aaliyah, I pray that as you grow, you will remember these words. Remember the love we have for you. Remember how strong you are. 

I love Aaliyah, always have and always will. 

Love Mama 

Conviction

Hi all.

Writing that post last night proved to be very good therapy for me and indeed has given me a fresh perspective.

How lucky are the children that are able to get their surgery. How hard must their parents have worked to get them there? We are not the only ones that have had to struggle through the highs and lows of fundraising. Indeed, I am yet to meet one family yet that hasnt had to do some form of fundraising. What amazing parents they are!!!

I have no right to be jealous. Instead I should look up to these wonderful parents that are willing to go above and beyond for their children. What an inspiration!!!!

So thank you for being patient with me and very forgiving when needed. Your support means so much. xx

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).