to pick my way slowly down the steep hill from our houseâon skatesâwhile grappling with the pram, I decide to walk down sock-footed before setting off.
Once en route, we love it. Okay, at several months of age Aidan doesnât say much but I take his silence as tacit assent. Skating through the streets with the brisk wind whipping my shirt and hair into a frenzy is liberating. Itâs total escapism from dishes, mouldy grout, piles of tiny soiled clothes and the weight of worry. Exercise, especially outdoors, quickly becomes crucial for me, where I search for hope and help. As we break out to the coast road, the sea is smashing heavily into the rocks, sprinkling us as I propel the pram forward. Push glide pray, push glide pray, push glide pray .
Occasionally we stop at the Brass Monkey, a cosy shack of a cafe which sits on a curve of the coastline, facing the open sea. It is always snug and serves comforting staples like clam chowder with homemade brown bread and mugs of hot lemon, honey and ginger. I gape across at the water, sometimes tranquil, other times raging, cuddling my cherished little boy tightly on my lap. These are good days.
One morning we leave the skates behind and head into town to meet Darryl for lunch. Aidanâs in the pram as we walk up to Darrylâs office; although now about three months old, heâs still very small. In fact, he looks something like a cross between a baby and a pinto bean.
âOh, hello. How are you, Susan?â
I turn to see a couple I know only vaguely, the wife is a colleague of Darrylâs. They were aware I was pregnant, but havenât heard that our baby was born prematurely. Or that he has been diagnosed with cystic fibrosis.
We plough through the standard see-saw of new baby chit-chat.
âHow was the birth?â Are you getting any sleep? And finally it comes, the question that opens the door, the one Iâm half wishing for and half dreading: âSo, he is totally fine now?â
I pause momentarily, wondering about the question, which was asked in an assume-the-positive manner: âHe is fine, isnât he?â Not sure what to make of thatâand not yet practiced at reading social clues about illnessâI plunge in.
âActually Aidan has cystic fibrosis, a genetic condition which means â¦â Mistake! Reverse! But, of course, I canât. The words are out and the couple appears to have been stricken by a severe attack of social awkwardness. In unison they begin an odd chorus of shifting their weight, shuffling their feet and glancing at their watches. Clearly there are other things they would rather be doing, like having major dental work. I quickly wind up the conversation and hurry away to find Darryl.
âI feel totally humiliated,â I tell him after dishing out all the details of the encounter.
âWhy? Itâs their problem if they canât handle talking about this.â
âI donât know ⦠I just donât understand what happened. Is illness one of those ultra-personal issues, like sex and salaries, which arenât meant to be discussed?â
âMaybe itâs just them. They might be expecting a baby and are panicked that it could have an undetected genetic condition.â
âYeah, so faulty genes arenât contagiousâspeaking to me isnât going to increase their odds of getting some mixed-up ones.â
Whatever their problem, itâs clear I need to develop a barometer for judging with whom, when and where to talk about Aidanâs health. This feels particularly important as I know so few people and am still finding my feet in a new country. I also want to learn to communicate a true picture of the reality of our lives. For example, I am regularly characterised by other parents as some kind of Wonder Mum: doling out pills, dealing with doctors and living with a dodgy future.
âI could never do what you do,â they tell me.
Really? What