untangling this thing we call life…

Monthly Archives: October 2014


Darling Girl,

From the moment you existed, you have stood alone exuding a strength and determination which take my breath away. I knew you were anchored inside me only two days after you were conceived… not as a part of me as I experienced with your brother, but as a distinct, separate entity.

As you grew in that little bubble of amniotic fluid, you continued to fill me with a sense of confidence. I felt a sense of unbelievable peace and confidence that you were growing exactly as you should, that I had no need to worry about you. You know your Mummy well enough to know that I am a worrier, and this is the first gift you gave me: an absence of anxiety, the most marvellous gift!

Once you were born, that sense of survival continued… you were such a quirky, beautiful, odd little baby. Doing things in your own time, in your own way and utterly determined not to be swayed by anyone (possibly apart from your Big Brother). That independence and determination filled me and fills me with pride and joy. After all, I never wanted to be a mother in order to “have” children. I looked forward to growing you, and helping you grow (cooking you, if you will) into independent, beautiful adults. You seemed to take that on board from the very beginning, and it is something I have always loved about you.

Kesia at the Well Child Awards, having been awarded “most Caring Child”. She has never believed she was worthy of this award, but I hope one day she realises how special she is.

In one sense, you have always been “cooked”. Your eyes have always been deep and filled with the wisdom of a thousand years, yet you are still my little girl. You may not like or want those close cuddles and physical signs of affection, but I know in a million tiny ways how much you love me and depend on me.

In other ways you are so very little, and so very needy. And you take my breath away in your ability to surrender to that part of yourself, and to come to me or Daddy for help. Even when those pesky words just won’t come out, you find a way to say “please help me”, and let us know just as soon as you are able that those angry sounds just came out wrong.

I love and hate your ability to apologise so sincerely when you know you have done wrong. You have a strength of character that I simply do not, and you push me to find the best in myself so that I may respond in kind and forgive you as quickly and sincerely as you offer your sorry. You are quite a teacher, and I love you for it.

That growing girl in her element!

 

When I look at you, my Darling Girl, I imagine that if sunshine were to solidify, it could not find a shape much better than your heart and mind and soul…

So the next time that you worry that I may be sad that you do not like hugs… remember these things. Remember that you are precious far beyond my ability to hug, or speak or write. I am simply tremendously happy that you are You, and that you are part of my life.

Thank you, sweetpea!

Your Mummy



“Mummy….”

Much hesitation follows, then she continues in an accent that immediately conveys her discomfort and anxiety:

“Is it making you sads when I is not liking hugs?”

I have to clarify that this wonderful girl is very nearly a teenager, tremendously bright and extremely articulate. She also happens to have Asperger’s syndrome and suffers from ¬†at times crippling anxiety. Her speech then becomes affected, from the appearance of strange and quirky accents, to grammar reminiscent of Roald Dahl’s BFG, to a complete inability to utter any word at all.

“Is it making you sads when I is not liking hugs?”…..

My answer was an immediate no, by the way. But her question stemmed from wonderful work occuring at her school during which she and her friends are exploring what it means to be autistic and a girl. And in the work, she learnt of a mummy who told of her sadness faced with her daughter’s dislike of physical affection.

There is a great deal written, especially in the world of blogs and social media, of the difficulties faced by parents of children with special needs. There is also a great deal written about the wonder of such a life.

I’d like to find a way to write a balance, to let you in to my life in such a way that you understand the extremes with which we live, simultaneously wonderful and dreadful. I’d like to find a way to write how much I love my children and being their mother, and yet how hard it is to witness their difficulties, how hard it is to bear the brunt of their confusion, anger and sadness.

Would I change anything about these three little people? No, categorically not. Simply because the sum of their experiences and differences make them who they are, and I am loving seeing the burgeoning personalities and the potential they have to add some unique colour to our world.

Would I have chosen such a life? Would I recommend that you have children with additional needs? No, categorically not. There is no simple answer here. Any new parent quickly realises that having a child is a one way journey that will change nearly everything about how life progresses. With our special children, that change comes at you like a steam train, and does not stop. It is far more extreme than you might imagine, and the period of change and uncertainty lasts… a long, long time. Your choices as a parent, and as an individual will be informed and often decided by the disabilities faced by your child, and this will likely continue far into their adulthood. Not to mention that these children will always face far greater challenges than most. From the beginning, their lives are just tough.

So I am trying to write to my daughter… to tell the world how much she means to me, to tell her that I love her and value her just as she is. But I do not want it to be a rose tinted letter. I do not want it to be a starry-eyed fairy tale, because she needs to feel a primal honesty in it if she is to believe it…

Here goes…



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