All about Cystic Fibrosis

Grandma for life…

coverFR2016

Francine Bernier
St-Jean-de-Matha (Québec)
From SVB2016

June 21, 1999:

A little girl came to the world. Anticipated, expected, desired: Finally – she’s here!

I’m Grandma to this little girl called Odile and I call her “my pitchounette”.

My Grandma heart is filled with immense happiness. I cannot wait to traverse all those kilometres that will lead me to her.

I think of my son and my daughter-in-law, and I am so happy for them. They are dad and mom for the first time. All hopes and dreams are open to them. The future is bright …

June 24: The phone rings. Crying, my son tells me that Odile is very ill. After an emergency operation, a terrible diagnosis fell upon us. Odile suffers from cystic fibrosis: a fatal and incurable disease that attacks the lungs and digestive system.

Phew! At the other end of the line, what do you do? What do you say? I feel so helpless … You cry with your son and encourage him as best you can … Odile is at the Ste-Justine Hospital. She will spend several days in intensive care, and will be in intermediate care for several days afterwards. When I can finally see her – all hooked up – it’s a little angel who is placed in my arms, and at the same time also a great fighter who has just fought her first battle for survival.

Since Odile’s birth I have been a witness to the many battles that she has fought against her illness, of the great suffering that she endured, of fears, worries and anxieties. I’m also a witness to her great victories against the disease, to her hopes and her dreams. It’s undeniable, Odile is a great fighter. A small happy and cheerful girl who loves life.

Odile was still a baby when my son and my daughter taught me how to do “clapping”. This is a method of accurately hitting several key places to dislodge the thick mucus that accumulates in the lungs. This was a priceless gift. They trusted me and each session is a moment of grace that I share with her.

Odile will be 12 in a few days. I’m her grandma and sometimes I feel very small in front of this child of exceptional maturity.

I am so proud of my pitchounette!

I wrote this text 5 years ago. What has happened since?

Odile became increasingly ill. Her hospital stays became more and more frequent until the bi-lung transplant that she miraculously received in 2015, which radically changed her life. She was only 15 years old!

She’s come so far …  She’s made so much effort to be who she is now: a beautiful and joyful young woman, happy, always smiling; a young woman who loves life, her studies, her friends, and most of all, her family.

Odile was never alone in her fight, even in her moments of great darkness. When a serious disease settles, it becomes the disease of the family.

There was her immediate family: dad, mom and two little sisters.

If Odile is strong in the face of her illness, and what follows from it, it is because she draws that will and energy to never give up from her parents. Always she is able to hold on to them. Trust, hope, determination and will are attributes from their daily lives. Sorrows, anxieties, and fears are experienced within the intimacy of family, which becomes a place of healing.

Odile’s little sisters have always known her to be frequently sick and suffering. Before Odile received her transplant, each painful experience their big sister went through made them sad, worried them, raised questions always answered by mom and dad.

They have suffered with her, they were afraid for her, they kept hope with her. Meanwhile there were moments of great happiness experienced daily, these never-ending bursts of laughter, complicity between sisters, and this need for the presence of the other.

There is also the family of the family:

Grandparents, uncles, aunts, cousins, ​​who love and are worried… and who are afraid … All have seen her in extremely painful states. That was before the transplant!!!

I am one of the two grandmas of Odile. I suffered with her, I hoped with her and prayed for her. But I am primarily a mom. Through my son, I endured the suffering in silence and impotence.

It will be 1 year in March that Odile was grafted. She lives well, post-transplant. It is a period of calm all can enjoy to the greatest extent. Whatever future bridges Odile has to cross, all of us, her big family, will cross them again with her.

THIS is what family is.

 

 

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