A text written by\u00a0Guylaine Rivard
\nThis is a text that has been originally published in the group Les mamans Duchenne.<\/p>\n
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I am rolling with the punches. Each word, I feel like I’m taking a step back with my chair. I can’t; I really can’t believe that such a thing is happening to us…<\/p>\n
This incurable disease will slowly take my little boy away without letting me do anything to stop it. I went shopping with F\u00e9lix right away after the diagnosis because that’s what we planned to do: going for dinner at a restaurant and buying him sneakers.<\/p>\n
I can remember sitting at a table, F\u00e9lix couldn’t stop talking (as usual). I look at him, and I smile. He’s six years old. I just want to scream and cry.<\/p>\n
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There comes his first neuromuscular clinic. I’m waiting for our turn in the corridor. I feel devastated. I see a family with a youngster who was probably 17-18 years old or so. The parents are talking to everybody:<\/p>\n
” Hi, Daniel! How are you?”<\/em>\u00a0 The mother speaks with interveners. Between two words, she gives pieces of a cookie to her son, because he can’t raise his arms to his mouth. She keeps going as she still speaks, she puts the juice with a drinking straw close to his mouth. Let me say I absolutely do not understand how they’re doing to be happy talking here, and even laughing! I find them impressive, and his mom fascinates me, I don’t know how she does it.<\/p>\n <\/p>\n Today, I know. I know that you do learn to live with the disease. It becomes a part of our life. One day, I wake up, and resilience shows up. I got to prepare myself to deal with the disease because the diagnosis is a shock that we must go through, but other shocks will follow. I must decide to fight, to roll up my sleeves and move ahead to make sure F\u00e9lix lack nothing and help him the best I can so he can also go through shocks and help him grieve.<\/p>\n <\/p>\n Resilience, resistance, I am not quite sure… But one thing is sure, we are fighting, always. (F\u00e9lix’s dad is a great history fan. He made me realize that June 18th is a date that we will never forget.)<\/p>\n June 18th, 1940: De Gaulle’s appeal for resistance General de Gaulle calls every Frenchmen and Frenchwomen to stand up and fight against the enemy:<\/p>\nLearning how to live with the disease<\/h3>\n
Resilience and resistance<\/h3>\n