“When the doctor told me about Athénaïs’s genetic disease, she was 1 year old…”

WHEN THE DOCTOR told me by phone about Athénaïs’ genetic disease, she was 1 year old and I had been expecting my second child for five months.

It was very brutal. I was alone at home. Stunned, I had the feeling that everything was falling apart. Six months later, the doctors spoke of “disability”. Could she walk? Talk ?

With Guillaume, my husband, we supported each other and I am certain that we were chosen to help this child grow and love her unconditionally. Full of life and hypersensitive, like her little brother, Athénaïs suffers from epileptic seizures, one of the effects of her illness (1). Each of his progress amazes us: first steps at 28 months (with orthopedic shells); first sentence around 3 and a half years old…

I work as a freelance professional makeup artist for women, men and children. This job excites me: I like to create, meet others, discover new places. But when the pace picks up and I have to juggle between a business trip, Athénaïs’ anger (whose emotions are heightened), her diet, daily management and a visit to a specialist, I break down.

Despite the essential help from the medical-social center, certain periods prove very trying. So I pray, as one cries in the desert. I listen to songs of praise and prayer which nourish me, give me hope and confidence: “Do not be afraid, let yourself be looked at by Christ”, “Receive Christ”.. For the moment, I do not I am not able to go to mass and this is how I live my faith.

Athénaïs is almost 6 years old. She loves these songs and takes them up spontaneously. She adores “Jesus, My Life is Yours”, by Sister Agathe. She often sings it to me, sometimes with her words: “To you, mom, my heart, my life! » Some evenings, she makes the sign of the cross and prays with folded hands. She says “thank you Jesus” for everything she experienced during her day, even her anger! She is a burst of goodness and life. Spontaneous, cuddly, generous. Athénaïs invites me to slow down, to give thanks, to marvel. It helps me grow in patience and confidence. My extraordinary little daughter is leading me on a path beyond me.

1) Tuberous sclerosis of Bourneville.