Being diagnosed with a chronic disease is never a good news, but receiving such a diagnosis for his child is a whole different story… It often starts with shock. Our child’s life, who yesterday was normal, suddenly switch… No, it’s those of the parents who change suddenly, with it’s share of learning, care, support while the heart is in small crumbs, burdened with immense pain. The head has a thousand questions; “Why her and not me?… Have we done something wrong?… It’s our fault?… What could we have changed?…”.

Then, the return to everyday life, with this intruder who invited into family life. Without having the choice, we must integrate it, give it a place that does not take up all the place… Relearning, finding new bearings with the demands of the child’s illness.

The network is gradually being built. We encounter professionals who share their knowledge and expertise. They give tools that make everyday life easier. Their expertise reassures and guide.

Our child’s chronic illness becomes our illness. We take care of it, we give care, we take action and then we teach it gently…Like we show how to brush teeth or make his shoe buckles, the care medical are transmitted little by little.

One day, the sentence of another mother gives direction to follow. “This chronic disease is the test of my life!”. It’s like a punch in the stomach! NO… the disease so present at every moment, the test of a lifetime, NO… Then comes the conscious decision to choose how live with the chronic illness so that it does not become a ball at the foot of his child. Choose to make him normal child, with and despite the disease.

A question becomes the guide to ensure normality : “If our child did not have this disease, would she or he this activity or that one?’’ The answer was sometimes no, but most of the time the answer had to be yes. So, as parents we roll up our sleeves and find how to integrate disease management into this activity or this one…

Then, gently choose to make peace with the pain and the anger to better live with the disease and thus allow his child to grow normally. Because ultimately our way of living with it will influence how he or she will grow and live.

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