I have had a number of articles printed all over the world recently, each of these has been an expression of my emotions on this journey of raising a kid that is a different type of perfect. One article “My Daughter Is A Different Type Of Perfect” went viral and we lost count of how many times we estimate it had been shared after half a million, half a million!. Wow if only I charged $1 per view.
Each story (like this one) is written in my spare room, my office where I run my charity SmileDial. Each story tales only moments to write, I do not think of content, plot or any outcome I just write what is in my head. Words just fall out as fast as I can type them (with one finger typing is a long process).
Many of the words that have fallen out my head deal with the struggles families like mine face, they talk about the bad times, the feelings of being alone and the reality that some days bare just shit, yip shit. It is so easy for me to write with my one finger about the bad times as these times bring so many emotions to the fore, it is easy to bitch and moan, easier than writing about good stuff. I have a tendency to be a little “dark” at the best of times, my name actually translates to the The Dark Robed Dark One, cool. I paint, or I used to when I had time mostly using black and white as my colours (my son tells me black is a shade not a colour?). I like dark stuff, always have.
What my writing has not expressed is the amazing joy raising a child with special needs can bring, perhaps I need to take time to look at these beautiful moments and maybe I should buy some bright yellow paint for my next painting, oh god no please allow me to stay dark in some places bright yellow paint is not my thing. Every parent has great moments with their child, amazing moments, life is awesome and beautiful and perfect (oh look a butterfly) moments. Having a child with special needs is no different, the moments may be but the joy we get from them is no different and in some cases even more magical and butterfly like. Butter fly moments, awesome that can be the title of this blog post.
I have a 17 year old son, I love him with all my heart and I am so proud of him. He was born premmie and spent a few weeks in an incubator after his birth but otherwise he is just a normal teenager. I experienced his first words, steps, food, pooh on a potty and all the standard stuff, I recall potty training him by peeing with him on the lawn outside oh the butterfly moments. I have watched him grow into an amazing young man and soon he will go into the world to find his life and begin his paths. This is the way of the world, this is the way things should be and this is the wonderment of having children.
My different type of perfect daughter is well, different. She is three and a half and has not taken that first step yet, she speaks only a few words and well there is all types of things going on and so many “normal” milestones have passed without her achieving them but then again they are not her milestones, they are the “normal” milestones. My daughter has her own milestones, her own goals and we adjust the rules and timeframes to suit her, we can do that if we want.
When my daughter reaches a milestone we cheer like it is um, 1999? and we feel such joy it can bring us to tears (not me I do not cry I am dark remember). These moments are all the more poignant because often we never expected these milestones to come at all, if you believe it will not happen then it does you tend to get excited “Holy shit did she just do that, come here and look at this, do it again, DO IT AGAIN! Woo Hoo good girl!”. That may be because she just opened her hand, the one that does not work well, these tiny triumphs that mean so much. Woo Hoo.
I spoke to a dad recently about his child with special needs, we spoke about how we love our children. He said he loved his different type of perfect child in a different way but could not explain why or how. We often do love our kids differently, not more or less than each other but different. I love my 17 year old son with all my heart and soul as I do his little sister. I guess the love I have for her is different because my role in her life is different, she is so much ore vulnerable and needs me in different ways. My son had the luxury of being able to be independent, a luxury my daughter does not have. He will soon be a man living his life as he sees fit, my daughter will require me to be with her for many many years (maybe forever) to help her do so many things. This is the reason the love is different, my son no longer needs me to be there all the time, my daughter depends on me being there al the time.
Everyday I hope for a moment, a woo hoo moment with my daughter. These come on a regular basis and each moment can be tiny and pass quickly. As I type I can hear her singing with her mum in the living room, she is having a good morning and not screaming WOO HOO (for her and us). This morning she gave me a hug when she got out of bed, she signed I love you last night, I heard her laugh this morning butterfly moments come always.
The struggles of raising a child with a special need are immense but the rewards are amazing, they come maybe less often and slowly but they come. I love my children, each has shown me so much each in a different way.
I am going to sing with my daughter now, today is a good day and I want to play with her.