My husband was 36 when the doctors' verdict fell: Charcot's disease (ALS)

I was fortunate to be born into a united, happy and Christian family. I am therefore one of those born in cotton!

CThat doesn't mean everything was easy, but I still grew up in a protected and blessed universe with righteous and loving parents. Faith has never left me, but I realize today that it was more of a contract or a passport for a happy and unhooked life on earth, than an insurance for Eternity.

An episode in my childhood had confirmed me in this somewhat naive and reassuring faith: my little brother had been run over by my father's tractor before he was three years old. My father had picked it up as dead, flattened like a pancake. But he had miraculously emerged from it and had no consequences.

I imagined that even if there were tiles arriving, everything would eventually work out… I got married in this candor with Pierre and we were convinced we would die together and be buried in the same coffin for more. ninety years old!

We felt invulnerableWe had three children and we felt invulnerable… Until this winter 2012 when Pierre started to feel very tired… I was pregnant with my fourth child and my husband delayed before alarming me, he wanted to protect me … But when Simon was born, I saw that he was having trouble carrying his son.

A threat had always hung over him, because his mother and his grandfather, then his uncle had all suffered from Charcot's disease (ALS) around the age of 35. It was the Stone Age… But this threat had not worried us, because we felt free from this inheritance. The ties had been severed spiritually and for us Peter had new DNA in Jesus.

It took several months before a diagnosis was made by an Amyothrophic Lateral Sclerosis (ALS) specialist in Toulouse. Pierre initially refused to take examinations because this disease was the height of horror for him. He knew her so well… Adolescents, it was he and his sisters who had looked after their mother.

ALS is dreadful, it melts the muscles of all the limbs, it also affects the muscles of breathing and swallowing. The whole body gradually gives up, but the brain is functioning perfectly.

The day the doubt was no longer allowed, I remember how devastated Pierre was. In a few seconds, the doctor announced to us his near end in terrible conditions, and at the same time the risk for our children (one chance in two) ...

That day, the abyss opened up under our feet, we slipped into a bottomless abyss ... It was then that I got hold of myself. I felt, when all was lost and our future seemed gloomy, that I could, despite everything, choose life. I held up Psalm 23 like a cry and read it to Peter to the end, gritting my teeth so as not to cry.

« When I walk in the valley of the shadow of death I fear no harm because you are with me "...

This reading was for me the crystallization of a choice, I believe that we can always choose… But we must not delay too much, we must grab this hand which is extended to us.

Little by little peace came over meLittle by little, peace invaded me, it was not denial, nor repression, no it was peace which surpasses all understanding. It allowed me to endure the two dreadful years that followed. The rapid weakening of Pierre, who very quickly needed help to eat, dress, wash… Not to mention the children and their questions (the eldest was ten years old, the last a few months).

After several months, Pierre could not move at all, he was eating with difficulty, he was breathing with a mask ...

All these times were blessed despite everything, we managed to laugh in dramatic situations and I often felt overwhelmed by an indescribable joy. She had to come from elsewhere, given the circumstances ...

We believed in a miracle of healing to the end but Peter passed away peacefully in August 2014We believed in a miracle of healing to the end but Pierre passed away peacefully in August 2014. This death instantly was like a double sorrow for me. The sadness to see the one you love leave and the feeling of having been betrayed by this force that had supported me during these two long years. Yet in the midst of my tears, I perceived as a divine wink: the month of Peter's death, thousands of people on the planet took up the Ice-Bucket challenge, pouring themselves a bucket of water on the head in order to collect donations to support research against ALS.

Today, I feel that God has not left me. Peace is always there and joy overwhelms me regularly for no apparent reason. These are gifts that dazzle me and fill me with gratitude!

Interview by SG

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