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To tell or not
To Tell or Not to Tell By Susan Biggar It happened on the main street of Wellington, New Zealand. Even though it was 8 years ago I can vividly recall the raw embarrassment. A bit like one of those all-too-real dreams where you’ve somehow forgotten to put your pants on before going to work. However, rather than under-dressing, this was an accidental case of over-revealing. It was a beautiful autumn day and Aidan, my 3-month-old son, and I were on a walk through town. We bumped into a couple that we knew, though not very well. They had known I was pregnant, but they didn’t know that Aidan was born seven weeks prematurely. Or that he had been diagnosed with Cystic Fibrosis. First came the normal new-baby chit-chat. “He’s so sweet.” “How was the birth?” “Are you getting any sleep?” And finally it came, the question that opened the door, the one I was half-wishing for and half-dreading: “So, he’s healthy now?” Long pause. Do I tell them? Although worn-out from talking about CF, I didn’t want to hide such a major element of our new life as parents. Deep breath and out it came. Two sentences into my explanation I knew that my decision to “tell” was the wrong choice. My friends turned a rather ghastly grey as their eyes glazed over and they attempted (to my paranoid mind) to beam themselves to a sandy beach in Fiji, far from my story. I quickly wound up the conversation, gave a small wave and made an ignoble escape down the pavement. This experience left me confused, as I tried to understand my friends’ response. Maybe they were afraid of one day bearing a child with an undetected genetic condition. Who isn’t? Possibly they simply couldn’t cope with the weight of our misfortune. Whatever it was, I knew that I needed to develop a better barometer for judging with whom, when and where I would share our story. Initially this meant that my previously open nature gave way to hesitancy and self-protection. I found myself avoiding the issue of CF with others, discreetly slipping enzymes to Aidan, assuming that no understanding was better than a misunderstanding. I needed to protect myself. And I also began to question my own motives for telling people. I dreaded the pity that often followed my self-disclosure. At the same time, I wanted to have my pain acknowledged, just to have someone say “That must be really hard”. I found that I was as confused about my own needs as I was uncertain of my friends’ responses. My tight-lipped approach, which provided a sense of protection, also led to isolation. Surrounded by other parents at playgroups, in the neighbourhood and at church, yet coping alone. I had learned that telling everyone could expose me to unnecessary pain and vulnerability and probably wasn’t the right approach. However, in time I discovered that telling no-one wasn’t the solution either. When I kept quiet it left my “close” friends wondering if we really were close, while I missed countless opportunities for the support I was craving. Finding the balance was the challenge. Last year I took up rowing, in one of those long, tippy boats. Well, for me, learning to judge when to “tell” has been a bit like learning to keep my boat from tipping over. To keep upright you have to develop a good sense of balance and know your own body well. Sometimes you lean too far in one direction and then over-correct the other way and in you go. I find it the same with talking about CF. You have one negative experience and vow never to mention the words in public again; that is, you over-correct. But eventually as you begin to know yourself better (and know what responses you can cope Right: Susan with Aidan (back), Oliver (front, left ) and Ellis (front, right) with) you venture out again, realising that this battle we’re in is too big to be fought alone. I think that’s sort of what has happened with me. After clamming up for a long time, I finally began to let that protective shell crack open. And as I started learning to share about our family’s challenge a steady stream of personal struggles began to dribble out of the parents around me. Not cystic fibrosis, but developmental delays, a still birth, marital struggles and many other very real fears and worries. Our family has changed cities several times since my Wellington experience, forcing me to constantly make new friends – and make decisions about discussing CF. But as the stories have come out over the years, I have been healed and encouraged - and seen others experience the same - as we have unloaded some of the burdens of being human. Despite years of practice, I still manage to make pretty sizeable mistakes in my judgements about “telling”. Recently CF came up in a casual conversation with a mother I’ve known for over a year at our sons’ school. I actually thought she would have already been aware of the presence of CF in our lives. But she wasn’t. When I mentioned it she stared at me for a moment, looked slightly nervous and then said something like “Oh, I didn’t know that. Well, I’ve got to go now. Bye.” Not what you would call a roaring success. However, unlike my first encounter in Wellington, I didn’t feel that I had unzipped my insides, revealing all to an unwelcoming audience. The difference was not in her response, but in my capacity to accept her reaction, whatever it was. I can’t change the fact that my kids have CF. And I can’t control how others respond to that information. But I think I’m learning that while it’s okay to protect myself a bit from others’ insensitivity, when I try to go it alone I’m the big loser. Susan Biggar lives in Melbourne with her husband, Darryl, and three sons.
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