Community

The first few months of Aaliyah's life were the hardest, loneliest months of my life so far. We were lost, oh so lost. But slowly but surely we dug our selves out of the trenches, found some answers and found support. 

Its a funny little world you find yourself in. Thrust into a world where audiology appointments and speech assessments are the norm. Appointment after appointment. Some days were HARD. Trying to get an eight month old baby to keep a hearing aid on (and out of her mouth) was no easy task. There were days (and still are days) that I want to throw that hearing aid against the wall and walk away from it all. For good. 

The only reason we have managed to carry on and not give up is because of our village. They say it takes a village to raise a child. Well, we have a village, not only for our children but for us as well. And to say that we are blessed would be an understatement. What we lack in finances we more than make up in support. And I am not just talking about financial support (although our friends, family and strangers have been more than generous). It is so much more than that. 

Friends that drive from one end of Brisbane to the other, just to pick up a fundraiser tin. Those that volunteer at each of our fundraisers and those that turn up to each and every event. The ones that send me emails and messages, checking to make sure I am ok, is there anything they can do. 

Its the people that we have never even met donating, spreading the word. 

Its the friendships made, bonds that have been formed. 

It is for this reason, that despite the challenges, the hard times and the dark days, Im not sure I would change it. In some ways, I am grateful for Aaliyah's microtia. It has opened up my eyes to just how amazing this life is, how compassionate the human race can be. The past four years have seen up witness some of the most gracious acts, the best of humanity. And for that, we are blessed. How many people go through life without really, REALLY seeing just how amazing man kind can be. We have, we have seen it, we have lived it, and we are thankful for it. 

We have some hard times ahead. We have eight short months to some how come up with another $60 000, a near impossible task. On the days that I feel like giving up, I just need to look at where we have come from. And the support we have. Our family, our friends and our followers. Aaliyahs Journey facebook page has 788 followers, many of whom I do not personally know. When my spirits are low I just need to look to her facebook page to see just how much support we have. 

A HUGE HUGE thank you to all that have followed our journey so far, those that have been there from the beginning and those that have just started walking with us. 

This post is dedicated to our support network. We could not have asked for a better network for to walk this path with us. Without your support giving Aaliyah the gift of hearing would not have been a thought to be considered. Together we will get Aaliyah to the states. 

Blessed Beyond Measure x

 

SHE IS WORTH IT

Tri Nation Challenge

It has come to our attention that we have followers and supporters from all over the world. People that have found out about our cause through family, friends or the media. For that we are truly grateful. That said there are three countries that we have the most followers and supporters - Australia (goes without saying), New Zealand and America.

We have had a lot of people comment that they would love to help Aaliyah but do not really have the funds to do so. And we get that. Times are hard for many of us and just making it to the next paycheck can be a struggle. With this in mind we wanted to find a way that would allow more people to support our journey without them breaking the bank.

It was with this in mind that my Aunt came up with the idea to hold a tri nation challenge. What we are asking is the following. Do you have a takeaway coffee on the way to work everyday? Buy a bottle of water? Or maybe a muffin and a magazine? We are asking people to donate the cost of a cup of coffee ($3 - $6, depending on where you live and what size you buy) per week (more if you like). It doesn't sound like much but if we have 40 people giving $5 per week for 20 weeks we will raise $4000. The more people we have support this, the more money we will raise.

So, where does the Tri- Nation Challenge come in. Well, Aaliyah has bank accounts set up in her name in Australia, New Zealand and America. We are putting the challenge out there to see which nation can get the most supporters for Aaliyah's Journey. I will be putting together an online Google Doc as well as creating a private group on facebook to access this document. All you have to do, is donate weekly (or the total amount monthly, whatever is easiest) into the country account of your choice. The country with the most supporters by the time Aaliyah gets her surgery wins.

I will be posting all three bank account details on this blog (in a separate post) as well as on her facebook page. We encourage you to to please share this link and the FB group with all of your friends. I will share the group on her page as well once I have set it up.

And as a little plug for all of Aaliyah's Australian followers. Her account in Australia is tax deductible. Meaning if you send me your postal address you will receive a monthly receipt that allows you to claim as a donation on your tax return.

We will not be doing it based on amounts donated, as due to the exchange rate, each dollar amount is worth different depending on the country. I also dont want to turn it into a game of  'I can donate more than you". Its not about that - for us, its about getting Aaliyah her surgery and allowing people to donate as they are able too.

All three account information will be available either later today or tomorrow. A huge thank you to Raewyn, Kathryn and Denise for setting up accounts for Aaliyah in New Zealand and America. Without your support, this would not be possible.

And a little reminder of who this is all for - little Aaliyah, 4 years old - loves swimming, dancing, playing with barbies and waiting for the gift of sound. 

Thank you for your support 

xxx

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