We have to crawl before we can walk - then we can fly!

I love to write.  I dabble with poetry and have started to write children's books.  My aim is to write more and get them published.  I like using play on words, and one late night brainstorming session, I thought... Fly.  A fly, who can't fly.  There's an idea.  And this is what I came up with.  I like the message behind it.  It's message resonates with me not only with disability awareness - it's not only okay to be different, you should embrace it, and celebrate it, - but in every way in my day to day life.  Live your life, find your place, and be happy. :)

Fly

Once upon a summer sky, there lived a special little fly
He was born with wings a little small, and Fly, he could not fly at all
Look at you, you silly fly - you have small wings, you cannot fly
Why do they call you Fly at all?  You are no fly, you are a CRAWL!

Don't listen, Fly, whispered his mum, you are as good as anyone
Your wings are small, that much is true - but there's something bigger meant for you
Don't be sad for what is not, be thankful for the gifts you've got
Be proud your wings are not the same - you're fly by nature, and Fly by name

One day you'll see, one day you'll find you'll leave the other flies behind
Your wings will take you far, my son, you are as good as anyone
A smile crept across Fly's face, he was determined he would find his place
I must find what is meant for me, what is it, and where can it be?

Once under a winter sky (not UPON for our special guy)
Fly, our fly, he heard a cry coming from a web nearby
Help! Help! Please help, get me out!  he heard a scared voice shake and shout
I’m stuck, my wings won’t let me through this spider’s web, what can I do!

When Fly, our fly heard the call he remembered that his wings were small
I’ll help, he yelled, I can get through, my wings are small, I can help you
And with that, Fly began to crawl through the spider’s web with his wings so small
He crept over and through, to the other side, he took it all in his stride

I’m through, Fly said to the one stuck.  The one stuck could not believe his luck
For standing there with a stick, was Fly, grab hold, he yelled. Now! Quick!
His legs gripped round like six sharp teeth on the stick that Fly had placed beneath
Fly pulled, and pulled and when he was through on the ground was not one fly but two

Oh Fly, you have saved me, oh dear Fly, thank you, you’ve done something no other fly could do
I’m sorry I teased you, and your wings so small, your strength has saved me, your strength is to crawl
I’m sorry I teased that we’re not the same, you are fly by nature, and Fly by name.

School days...

Today was my son's last day of school for the year - 3 months and 1 day since he started.
It was only a half day, finishing at midday.  He hurriedly dressed,  and ate breakfast, before picking out Christmas cards for his best friends, and teacher, and writing the messages ever so carefully in beautiful, 5-year-old writing, bundled together the gifts for his teacher, and the children and their mum, who kindly walks him to and from school.

I remember little of school at that age.  I remember my first day - the nervous, but excited feeling I had when I saw all the other kids at their desks, and the daunting feeling of sitting in a school assembly with so many kids, having been used to a kindy class of 30.
I remember walking hand-in-hand with my mum to meet the teacher, and find my desk.  I don't remember much more of that day.  But I do remember walking.

Walking (albeit with a scissor gate and on toes) into a mainstream school on my first day. I had proved the doctors wrong, and both my mother, and I had the determination to continue to do so.

 

The first school I went to was not a school for the disabled, but a public mainstream primary school called Birkenhead Primary.  I attended this school until the end of my standard 1 year (aged 7).
I remember liking my schooling there, and feeling very accepted by my classmates and teachers.
I remember the big field, and planting a tree along the fenceline. Pie days and roll days, ASB Savings days taking 50 cents to school to deposit into a savings account and getting another stamp on my savings book.  I remember singing on the stage at a school assembly, and the assembly singing happy birthday to me.  I remember the day we got to class and found our classroom had been burgled, taking money we had been saving, and school supplies from children's desks, leaving a loaf of bread and the message "Enjoy the bread" on the blackboard.  I remember taking flowers picked from the garden for the teacher, I remember my first crush, and...

I remember skinned knees, being teased, and boys mimicking my walk.  "You're spastic.  You're crippled".  "Yes, I am.  Tell me something I don't know", and being left alone.  I remember.

 

 

Never say never!

We all have good days, and bad days.  Sometimes it's good to have a reminder of just how far we've come - especially on the bad days.  For me, this reminder came on a day out with my mum only two weeks ago. 

The day itself was a good one.  Mum had taken me out shopping for an early Christmas present of an eye exam and new glasses.  I hadn't had my eyes tested for about 6 years, and my glasses were, let's just say, a little worse for wear. 

After I had finished at the optometrist mum and I went to have some lunch.  We got talking about all the changes that are likely to happen with 2013 just around the corner - me sitting my first exams in flute, my son's first full year of school, and a new home to suit my ever changing needs, due to my mobility.  Talking about the changes, I was feeling a little down in the dumps.  Not that the changes are going to happen - that is a good thing - but that I have little control as to why and when they need to take place.

I was so looking forward to my son starting school.  He was ready, and excited to be learning - a sponge for knowlege.  For me, it meant some much needed time to myself, having had him home nearly every day for the first 5 years of his life.  Not having my drivers licence, along with chronic pain in my feet brought on by even the shortest walk, meant that taking an under-5 out shopping or to the park was just too hard for me.  I lacked confidence in taking such a young child out, for fear of him running off, darting across a road or carpark, or simply having a tantrum when it was time to leave and not being able to tend to him.  I was looking forward to having the freedom to take a taxi to the shops to do some chores, get a haircut, and catch up with friends.  I was.  In reality, it hasn't been that easy.  Whilst I can get a taxi and go out, I often opt not to as I would have to take my wheelchair.  I like using my wheelchair, but find it difficult if out and about on my own at times.  I prefer to use my chair when my husband is off work and we go out together as a family.

When my son was born, in 2007, I already had pain issues with my feet, but it was less frequent and easier to predict and manage.  Even then, although adoring being a mum, I missed being able to go out - mainly cabin fever - and looked forward to the day where I would have more freedom again.  The difference being, back then, I expected to be able to walk to do all the things I had not done for 5 years.  I didn't allow for change.  I didn't expect it.

At lunch, mum told me, "you're amazing. What you've achieved is amazing.  The doctors didn't think", I interjected "I know, they didn't think I'd walk, or talk..."  "No, more than that, I've never told you, but they said you'd never walk, talk, go to a mainstream school, get married, have children, and told us not to "expect much".  She told me how she walked out of the doctor's office, disgusted by what he'd said, refusing to accept it.  It was from that moment that my story really began.  From then on, my mother had me going to daily physiotherapy (to the disbelief of the doctors who said she was wasting her time).
I left lunch feeling rather proud.  Proud of, and thankful for my mother who never gave up, and never said never - and proud of myself, for proving the doctors wrong, and never saying, and never accepting, never.  I needed that little chat.  I needed the reminder of how far I've come, and how far I have yet to go.  To never say never.  No matter what.  Thanks mum.

You're very lucky to have CP

"You're very lucky to have CP".  Six words that I never thought I'd hear.  Did I hear that correctly?  Huh?  The kind voice at the end of the phone went on to say "What I mean is, of all the disabilities, you're very fortunate to have CP because we have a society with things we can offer you to help you make your life easier.  Things that are not readily available to people with other disabilities."

Oh, okay, gotcha.

At 36 years old, I was contacting the Cerebral Palsy Society of New Zealand for the first time, to find out about what the society offers, and to join as a member.

I had been quite involved in the disability sector as a child, going to Riding for the Disabled, and other camps, meeting people of all ages and stages of disability, but having grown up, and moved out of the family home, I had become disconnected with the disability sector and really had no idea what help was available to me.  I simply hadn't needed help for quite some time, but now, things were different.  I had no need for a mobility parking permit, crutches, walking aids, wheelchairs, or home-help.  I could manage on my own.  But things change with time, and in time they had. Significantly.