Sunday, May 22, 2011

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.

Sunday, May 1, 2011

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.