Dear World

Dear World,
You do not know me but you have seen me. You will have noticed me at the mall, the park or even just on the street. I am hard to miss sometimes, I stand out more than other kids and sometimes I am pretty loud (sorry). I know you see me because I often see you watching me. Some of you watch me out of the corner of your eye, some over the tops of newspapers and some of you just stare as I go past.

Sometimes you will talk to me or smile at me, I like it when people smile at me (especially when I am being loud or making a lot of noise) those smiles make me feel good. Sometimes I do not feel good so anything that helps is awesome. Sometimes people will say hello to me, not very often but some people do. I do not know why more people do not smile or say hello after all I smile and say hello to almost everybody, I like doing this. I wonder why people don’t say hello back. My dad says sometimes people are just rude but I do not care I will say hello anyway because I am not rude. It seems silly that people will stare at me but as soon as I look at them they turn away, dad says it is because they do not understand me. I do not understand them, why do they seem so interested in me but don’t look at my eyes? Dad tells me I should always look into peoples eye as this is the window to the soul, are they scared of my soul?

Sometimes when people talk to me they think I am a baby and talk to me like I do not understand them. This is weird because I am not a baby, I am bigger than a baby and I can understand everything they say but they still talk slow or really loud. Sometimes they talk to my dad about me when I am right there but it is like they cannot see me? Why do they ask him questions about me when I can tell them myself, that is weird. Sometimes people say awful things that make my dad mad, really mad and I see him get grumpy. I want him to not feel bad and I wonder why people say awful things about me to him. I hear these things and they make me sad as well but I tell my dad that everything is ok and I pretend I did not hear them (I did).

I like playing with other kids, they do not seem to ask silly questions but they do ask questions. They ask things about me and I like it when they do because then I can tell them things. I do not know everything but I now more than most people, my dad knows loads of big words that he uses to explain things but i don’t. Adults ask stupid questions but kids ask awesome ones that are easy to answer and afterwards they just go ok and we can get on with playing. I wonder why grownups cannot do that, I thought they were supposed to be smarter than kids?

Some of my friends do not get stared at all the time like I do, they only get stared at when they are being really really loud. People think they are being naughty but they aren’t, the noises and things around them sometimes make them feel really grumpy or mad. When they are being grumpy and loud people stare at them then and say awful things to them and their dads, they just don’t understand I think. If I get grumpy I get loud but not as much as they do.

My dad told me I was different when I was a baby and would always be different, he says I am a different type of perfect (I like it when he says that). He said that in this world there all different types of people and I am just a type of people that is rarer than others, yip I am a rare different type of perfect. I will always be like this and I will always have people staring at me, or talking to me like I am a baby and sometimes saying terrible things to my dad but that is ok. It has to be ok because I can’t change it, dad says I should not have to as it is other people who need to change not me. It is not my fault some people are rude they just don’t know what it is like to be me. If they said hello they would know, but most don’t.

I sometimes wish I could get up and run away but i can’t because my legs don’t work to good, I sometimes wish I could stand up and yell at people who say mean things to my dad but i can’t because I cannot talk and most people cannot understand my sign language. I used to wish I was like everyone else but I don’t anymore because I see that most people are less happy than I am and they do not think things that I think are awesome are. I can see loads from down here in my wheelchair and I hear things that other people think I can’t, it is like being invisible sometimes. I keep smiling at people and saying hello because I like to do that and just because they do not say hello back is ok because that is another thing that makes me a different type of perfect, I am nice to everyone and do not care if you are different.


Fairies at the Bottom of the Garden

I hate this. I know hate is a strong word and maybe too strong for this feeling but I struggle to find another that conveys these feelings, this situation and this life. Other words rattle past as I write these words maybe better suited, words that may be less “dramatic” or in your face. Confused, lost, sad, depressed, lonely all these fit yet all these are also just ingredients that create this hate, this feeling.

I have never felt like this before but I have also never been in a situation or place that would create these feelings. This place I am now is not one of my choosing and there were no bad decisions or choices that bought me here and I did nothing to create this place or this life. Perhaps that is another reason to feel this way?, maybe anger is another word that flies past my mind as I begin to write this perhaps anger is a main ingredient to this hate. In the past I have made decisions that have created situations that have been less than ideal, decisions that took me to a place where I felt similar strong emotions. These places and times were of my choosing and I had no one to blame but myself for ending up there, how can you complain about a situation that you created?.

This road I am on now is more difficult than any other I have travelled and not once did I make any choice or decision that brings me here. Perhaps it is karma that carried me here to this place? I look back and wonder what I have done in my life that deserves this. This road is long and stretches as far as the eye can see, it reminds me of an image of a straight road through a bleak desert, a road that continues to the horizon and never gets closer to the end no matter how many steps I take.

On this road there are others with me, those who share this journey with me and each of us struggling to find the strength or courage to continue. We pass others who walk slower and we are passed by others who walk with a stride full of purpose as they bend their heads against the wind and push on. Like the hare and the turtle these people will often be seen further up the road, exhausted and crawling as their energy finally wanes and they begin to lose faith. There are many places to stop on this road, places where all hope is gone, truck stops for the lost and here is where we will all stop at least once.

It is ironic that at these places you will find tiny triumphs when you believe there are none. These places of the deepest despair are where miracles happen, a gift from Gods to pick you up just enough to walk on one more day, just one more day. As you stare at the road shuffling your feet from one step to the next your tears and pain often obscure visions of beauty that lay beside the road. The most delicate flowers grow here, in places where even angels fear to tread there is beauty. These places may be few and far between but they are there, somewhere in the distance. If you take a moment to look for them you will see them, sometimes you will walk for days on end to find one but they are there, like fairies in the bottom of the garden. If you believe you will see them but only if you look hard enough.

We walk these roads because we want to, we can of course decide to walk no further but we are very aware if we stop walking we will not move forward and we will not find any of the awaiting tiny triumphs. We walk not because we have to, we walk because we want to because there are only two choices, carry on or give up and giving up will only make our journey easier. We do not take each step to reach an end, there often is no end and no destination or oasis. We walk not for ourselves but for those who need us to continue this journey, our children. Our different type of perfect children, our children with special needs. We take each step with their tiny hands in ours, we are not walking our journey we are escorting them through theirs. Each step we take is fuelled by a love as pure as any other, a love all parents have for their children. We carry those who cannot walk, we talk for those who cannot speak and we hold them as the wind blows so strong we are sure we will blow away with the sand on the side of the road.

I hate this place. I hate the pain and the days that melt from one to another and can only days are told by what doctor we see and what therapist is coming.  I hate being here but it is not about me, it has not been about me for many years now. I often stop at the truck stops along the way (I guess if I am writing this I am at one now) and I lose faith and all I see is the road ahead a road that seems to lead nowhere. It has been many days since I have found a tiny triumph growing on the side of the road and my feet tire and my soul aches. It is when I feel this way that I am lucky to have my child with me, this child I am supposed to be protecting for in her eyes I see a thousand tiny triumphs, in her innocence she sees the road different than I. Her road is not a long endless desert her road is like any other child’s road full of light and beauty where fairies are real and dreams come true.

I will stand up and I will hold her tight and relish the feeling of her little arm on the back of my neck and the warmth of her breath on my skin. I will look into her eyes and seek the courage I need to move on, I will see the fairies dancing in her smile. I will let her lead me for some of the journey and she can show me where the tiny triumphs grow on the side of the road, beauty that I miss as I wrap myself in emotions where beauty seldom dances.

I hate this place but it is not about me and what do I know of wonderment and beauty when compared to my child? How can I teach her to see the beauty in everything when I cannot? How can I tell her to search for fairies when it has been a long time I believed there were any? When I began writing this I was standing on the side of the road with my head in my hands wondering how to keep walking, now I realise I was looking the wrong way. The road is long and often dusty and barren but if you look at it like a child you realise you are being lead by a spirit purer than any other, that of your child. They are telling you where the beauty is, you just need to listen.

I hate this place but I am blessed to be walking it with my beautiful child, perhaps it is her teaching me how to find fairies at the bottom of the garden.