A text written by Guylaine Rivard
This is a text that has been originally published in the group Les mamans Duchenne.
On June 18th in 2009, it’s been almost ten years ago today that the DMD diagnosis for Félix fell on us. I say dropped on us, but it was more or so as if I got shot in my chest. Duchenne muscular dystrophy…pow! Incurable…pow! Loss of walking ability, decreasing life expectancy, wheelchair…Pow! Pow! Pow!
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…
This incurable disease will slowly take my little boy away without letting me do anything to stop it. I went shopping with Félix right away after the diagnosis because that’s what we planned to do: going for dinner at a restaurant and buying him sneakers.
I can remember sitting at a table, Félix 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.
First clinic appointment
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:
” Hi, Daniel! How are you?” 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.
Learning how to live with the disease
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 Félix lack nothing and help him the best I can so he can also go through shocks and help him grieve.
Resilience and resistance
Resilience, resistance, I am not quite sure… But one thing is sure, we are fighting, always. (Félix’s dad is a great history fan. He made me realize that June 18th is a date that we will never forget.)
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:
“But has the last word been said? Must hope to disappear? Is defeat final? No! Whatever happens, the flame of the French resistance must not be extinguished and will not be extinguished.”
I invite you, mothers, fathers and Duchenne youngsters to not give up:
“Whatever happens, the flame of the Duchenne families’ resistance must not be extinguished and will not be extinguished.”
Interesting links
This text has been published on a private group called “Les Mamans Duchenne” that is administered by Carole Auclair.
https://www.facebook.com/groups/487532107953556/
