Happy 3rd Birthday Princess Nicola!!!

Sitting here, it is so very very difficult to believe that my beautiful baby is three years old. It is hard to believe that we have been fighting this fight for three years, and that she has survived the insurmountable odds that have stacked up against her.

The pride I feel now when I look at her is unbelievable. It surpasses anything that I ever thought was possible. Right from the very beginning she has made it very clear that she would do things her way, in her own time, when she was good and ready... and if that doesn't suit the rest of the world, then that's just too darn bad.

She has proved that she is strong and brave and smarter than people give her credit for... and that she is capable of miracles.

I have thought all day about what I was going to say in this blog entry, and I was going to do something big and deep and meaningful telling you who much I love her and how special and wonderful she is and how amazing etc...

And now that it's time to write it, it has occurred to me that I don't need to say any of that... because anyone who knows me knows how much I love my daughter, how special and wonderful she is and how amazing she is...

So I am just going to say this...

Nicola, you have turned my life upside down, inside out and back to front. You have taught me fear that I didn't know was possible, determination I didn't know I had... you have brought out a sense of humor that is almost macabre at times, and you have pushed my sanity to limits I didn't know existed...

But despite all that, I love you.

I love seeing the way you interact with the world, the way your face lights up with delight when you see something that pleases you, the way you communicate to tell us what you want. I love seeing the little things you do that surprise us every day... like today when you said 'cake'.

I love sharing every achievement you make with you, I love being there, watching you grow and learn, and watching the self awareness grow within you.

You drive me to the very limits of insanity, you reduce me to tears, you make me utterly crazy with frustration, but every second I get to spend with you is worth it.

I have been blessed to have you in my life and I hope that that blessing will be very long lived.

You are my heart, my soul, and my world. You, baby girl, are my everything!

Happy Birthday Sweet Princess.

An Apology

Yesterday, as we do every Wednesday, we attended my daughter's school for assembly. After assembly we were walking back to her classroom with Nicola in her wheelchair. She was excited after all the singing and clapping so she was waving to all the kids and saying hi to everyone.

Two little boys from the year one class pointed at Nicola and loudly proclaimed that she was ugly and looked like an alien.

Naturally, Jessica got upset and retorted with "She's not an alien, she's a baby!"

So these two little boys called Nicola an ugly baby alien and started carrying on, trying to push each other into her chair saying "Don't touch the ugly baby alien! You'll turn into an ugly alien too!"

Jessica got upset so we stopped and had a talk about how they were just naughty boys and that they were being mean and it wasn't very nice of them.

One of the teacher's aides in her class room overheard my conversation with Jess and asked me what happened, so I told her.

She immediately shook her head and got a bit cranky and said that she would take care of it, and she walked into the class room after them.

She came back to me while we were waiting for Jess to finish afternoon prayer and told me that she had had a chat to the teacher and the two boys in question and that she had made it clear that their actions were not acceptable and that both their parents were going to be informed... and that it would be raised as a class issue (and further a school issue) the next day (which was today).

I didn't think twice, and didn't expect to hear anything more about it... until I got to pick Jess up this afternoon.

Apparently she was taken across to the boys class room today, and they stood up in front of the class and apologised to her for being mean and presented her with a card to give to Nicola.

Apparently it has gone beyond the class room and into the rest of the school with talks on acceptance being delivered everywhere.

I am surprised... surprised that the actions of two small children carrying on has been dealt with so swiftly when I fully expected it to be brushed under the rug as 'boys will be boys'. I am surprised that it was dealt with in such a broad fashion, rather than being confined to the children involved...

But most of all, I'm hopeful that perhaps those two little boys might think twice before being mean next time. Even if they are just little kids, it's never too early to learn about acceptance and how being mean can hurt people's feelings!

My Journey

Someone recently said to me that disability is a great equalizer... no one is immune, no one is exempt, disability treats everyone the same...

But does it?

Disability doesn't discriminate, no... that much is true... but it also doesn't equalise.

A person who deals only with an intellectual disability cannot truly understand the life of a person living with a physical disability. A person who has a child with a disability, but has been blessed with relatively good health cannot truly understand the life of a person dealing with complex medical issues, or what it's like to go to bed every night wondering if their child will still be breathing in the morning... and a person who deals with a known and understood disability cannot truly understand the isolation and loneliness of dealing with a disability that is rare or even undiagnosed. And of course, vice versa.

Yes, as parents caring for children with special needs and disabilities, we are united by a single similarity, yet divided by our differences, and it is the division that seems to be a note of contention.

The Federal Government here has announced a new funding structure for children with disabilities, supposedly an attempt to give them a better start at life... but only if you tick one of their boxes. If you have Down Syndrome, Cerebral Palsy or Autism, you can get the funding. You can also get the funding if you have visual or hearing impairment... but if you don't, it's like your disability isn't important enough.

If you have Down Syndrome, Cerebral Palsy or Autism, you can get support... but if you don't, you go it alone.

They are the 'Big 3' or the 'Popular Kids' in the disability playground.

Don't get me wrong, I do not dispute for an instant that they are relevant disabilities, I don't dispute that they are very real and they come with their own complex problems... but I can see why they are the Big 3. Just in numbers alone they account for the largest portion of disabilities in Children in the country.

And for them, that's great... it really is... they have the numbers for the support and the funding and the interest and everything else...

But what about for those of us that don't tick one of those boxes?

What about those of us who dare to be rare?

Where does it leave us if we can't conform to a predefined standard?

Out in the cold... alone, and very lonely.

Sure, the parents of this kids understand what we're going through... they understand some of the complexities of dealing with a child with special needs... but they never really 'get it'.

They don't get how frustrating it is when those of us left behind miss out on opportunities for our kids because we don't have the right diagnosis. They don't understand the frustration that we have when we have to fight for everything that little bit harder because we don't tick a box.

But, I guess, at the end of the day, that is all part and parcel of this life. We are dealt with our own struggles, and they are our struggles to endure. If we are lucky, we have someone to share the journey with... if we are not so lucky we take the journey alone... but either way...

It is a journey that will make me wearier physically, but stronger emotionally... It will take me away from my friends and family, but make me closer to God... It will try my patience and fray my nerves, it will grate my feelings until I am raw and vulnerable, and then it will reward me in ways that I never expect.

It is a journey that not everyone else will understand because they don't live it on a daily basis... they don't deal with my confusion, my struggles, my isolation... they don't deal with the medical complexities and fears... it is my journey... one that I think I am destined to take alone...

And I am ok with that... I really am.

Vocal Ignorance.

I believe in many things... I believe in God, I believe in Religion, I believe in Science... I believe in freedom of choice, gender equality and I believe in same sex marriage... Above everything else I believe in a person's right to respect for their beliefs and choices.

But for as long as Nicola has been a much beloved part of our lives, we have met a certain amount of adversity and sometimes animosity from some other people. I have known for a long time that there would always be people who wouldn't agree with our choices.

But, to be honest, I never thought I would find someone who would disagree with our choice to keep Nicola alive.

I'm not naive, I always knew there would be people who would argue that her quality of life was not good enough by their standards, or who would think that the pain that she lives with, or the constant medical issues would not make her life worth living...

Yet, to be honest, I never thought I would find anyone who would not only express their opinions quite vocally to my face, but argue the point with me when I politely tried to disagree...

And that is exactly what happened on Saturday night... in front of all my family and several close family friends, at a celebration of love and happiness (my parents wedding anniversary).

My new next door neighbour came over to have a drink with us. I We had met on a couple of occasions beforehand and she has always appeared somewhat nice... yet Saturday night, just out of the blue, she asked me straight to my face why I bothered to keep Nicola alive.

The silence was like nothing I have ever experienced before... and the tension was palpable as every single person there turned and looked at me and waited for me to respond... which was really hard considering that the only response I really wanted to form was a string of obsenities followed by a flood of tears.

Instead, as calmly as I could, I told her that I didn't feel anyone else had the right to judge what quality of life is considered acceptable and that I felt that, despite her pain and her medical needs, Nicola's quality of life was actually quite good and that she was generally happy in the life that we provide for her.

Her response?

To tell me that her dogs are like her children now that her own children are grown and moved on and if it got to the point that her dogs couldn't run or play or do the things that SHE felt were important, she would have them euthanised... and she would do the same for her children.

She argued repeatedly for a good 20 minutes that a life that isn't 'normal' isn't worth living and we should not persist in our desire to keep her alive when her quality of life is not acceptable.

I don't understand this argument... I never have been able to. I struggle to find any reason, logical or emotional, that would give any person the right to take the life of another. I am not God... that choice is not mine to make... I am just a mother.

She is my child... she is my flesh and blood... and I will fight for her life with my last dying breath.

What kind of mother would I be if I turned my back on her just because she doesn't conform to what a bunch of mindless morons incapable of an iota of free and independant thought have deemed to be considered 'normal'?

What my neighbour said hurt. It really hurt... And I know that what she said, even though she probably didn't think there was anything wrong with it, hurt not only me, but my family and friends, all of whom love Nicola deeply. It hurt to think that anyone could possibly look at my daughter, see her smile, see her laugh, see her interact with her sisters and her family, and tell me that her life is worthless. It hurts that anyone could think that any child, regardless of their abilities or needs, is considered less important than any other child, or worse, that they are considered replacable.

Of course, she single handed pretty much ended the party... after that there wasn't much more to be done... I think everyone was a bit stunned. I walked inside and sat in Nicola's room, just watching her sleep.

Now... in the light of a new day, a good day, I know that it doesn't matter what she thinks. Her words may hurt, but I can chose to ignore them, which is what I am going to do from now on. I am not that desperate for a couple of free haleconia's that I would tolerate that kind of ignorance... instead I will chose to continue as I have been doing... to focus my time and energy on giving my children the best possible life I can give them... each and every one of them.

Early Release

Well... all I can say is that it's been an interesting week... but at least it has a happy ending!

We are home!!!!

Nicola's behaviour and tantrums deteriorated so badly over the weekend that Sunday ended up being a 13 hour temper tantrum because she didn't want me, she didn't want Aunty Kathy, she didn't want to sleep, she didn't want to be awake, she didn't want to play or read or anything else, she just wanted Daddy, and Daddy wasn't there.

We went back to the ward this morning, intending to argue our way to early release and to go home because Nicola just wasn't coping with it all mentally, she was not at all in a good place.

I was determined, there was a Qantas flight at 7pm and I was going to be on it, with or without their blessing.

Thankfully they had a modicum of common sense and a quick discussion about the situation with the added knowledge that we live only a few minutes from a major tertiary hospital meant that they agreed to let us go home. We got onto the 2pm flight and we were gone!

I don't remember the last time I saw her so glad to get home and to see her Daddy and her sisters, and most importantly her own bed!

So now we have to watch her sooooo closely for the next week for any sign of a post surgical bleed because that would most likely mean an instant flight to Brisbane, which I really do not want to do.

Thankfully, at least for the moment, we have no further surgeries on the horizon so I think it's time that we start looking into moving more and more of her medical care back to Townsville so that we can avoid more of these trips away in the future as much as possible!

Never a dull moment!

In true Queensland Health fashion, we have our next surgery date...

Next Tuesday.

Nothing like a last minute theatre booking to fill your weekend with a dash of chaos and a good healthy splash of manic panic!

They finally managed to get her a booking to have her Tonsils and Adenoids removed... We've only been waiting since October when she had her horriffic sleep study done! I thought it would have been done quicker given how bad the results of the sleep study were... but I guess they had other ideas.

Never a dull moment!

When it rains, it pours! Literally!

Wow... what a whirlwind of a week!

I spent 2 days in hospital after Alyssa was born while they investigated her and did all kinds of blood work because her haemoglobin was too high and her billirubin was high and they were worried about some kind of blood incompatibility.

We finally got the all clear on that and got her home Sunday night at about 9pm.

Monday morning, much to the glee of her big sisters, she got dressed up and taken to two different schools for 'Show and Share'. Of course, they had to help choose her clothes and dress her, which explains how she came to go to school wearing a white frilly body suit, a pink pettiskirt, little pink mary jane socks and with a big pink band and rosette in her hair. They were delighted.

By Tuesday things had gone downhill. I was in a lot of pain and could barely walk let alone do anything else and I had a blisteringly high fever. Michael rang nurse on call who told him that I had to present straight to the emergency department, who promptly put my in a bed and gave me copious amounts of morphine to help cope with the pain while they called in the surgeons for suspected appendicitis.

24 hours in hospital and I got released... not because I was better, but because there was a MASSIVE, and I do mean MASSIVE cyclone headed directly for us.

We drove home through the first lot of winds... it was so eerie... there were so few cars out, all the shops were closed, and there was just this air of impending doom everywhere we went, which was quite a few places because we were chasing an open pharmacy to get my antibiotics and pain killers.

The cyclone hit Wednesday night. Within two hours there were almost no trees left in our street, we had no power and the sound of the windows shaking was creepy!

The devestation left behind by the cyclone was awful... but we were so lucky! In the grand scheme of things, we only spent 9 days without power and we only lost a few windows and the side gate and a section of fencing... and my computer. The house across the street was demolished by a falling gum tree... but our town wasn't that hard hit.

The cyclone turned at the last minute and crossed the coast north of us, devastating a massive region of coast.

And then it was Valentines Day and my Birthday, both of which passed with pretty much no celebration because of sick children and medical stuff.

It's been crazy... but the craziness has made me realise how lucky we really are. No matter what happens, I have a family that I love and who loves me. I have been blessed with four beautiful children and a husband who is amazingly supportive and helpful, most of the time.

With all of that... given everything that has happened in the past two weeks, with people losing their homes, their lives, and their loved ones, what right do I have to complain?