This picture of my husband and me, taken at our son's wedding last year, perfectly encapsulates what I want to say ... let's see if my words will let me explain.
If you met us casually, you would see a happy family: wise-cracking, irreverent, sarcastic, (immature?) ... we have a lot of fun together. Depending on your own outlook, you might think disapprovingly to yourself that we lack seriousness, that we don't understand the way the world is or else how could we treat life so lightly? You would be wrong.
Somehow, in this unguarded moment, the wedding photographer has caught the essence of the more complex side of our mixed family emotions. We are watching our son get married to a girl that we also dearly love, our other two boys are "co-best-men", and all the people around us are smiling, so why these looks on our faces?
Because our daughter is not there, and it is an unchangeable fact of our lives that she can never be.
We are a happy family, that is true. There is also a deep current of sadness that runs underneath that happiness - it doesn't negate it, but it surely changes it. It's hard to explain to other people that losing our daughter to cancer is always a present tense event in our lives, that we are never over it because every day we get up and she's still not there ... that at every celebration and major life event there is a Kaylee-shaped hole that only we can see.
It's not even a discussion that you want to get into with most people because you know they won't get it, and in their "not knowing" may say something that is impossible for you to hear without responding negatively:
.... it's really for the best .... this will make you stronger .... it's God's will .... you've learned some valuable life lessons from this .... in time you won't feel so bad ....
... horse puckies
The major reason that I started working in autism was because it was the only diagnosis that seemed serious enough to be worth my time after I lost my daughter. I stayed with the population because I felt a kinship to both my ASD clients and their families. Here were people who were finding everyday life a challenge, but still getting up each day and trying again. These were people who dealt with difficult days with crying and laughing, recognizing the basic absurdity of many human conventions and bringing a dark humour to counteract the crises. It's a "thinking flavour" that I get (and share), and it's a group of people who have become very near and dear to me.
|drawn by Adam V, 2011|
You don't choose your life events, but you can choose the people you surround yourself with and the way you approach living once you know that it's a high-wire event without a net. I choose these wonderful, complex, unusual and talented people on the autism spectrum - their mix matches my mix.