Thaïs is almost two. Like most well-loved children, she is happy. She laughs as she runs on the beach. But her footprints in the sand, with toes turned out, tell a different story. Two Small Footprints in Wet Sand relates the overwhelming tragedy experienced by a family as a result of a genetic disorder.
A true tale told by a mother, it's the story of a little girl, of how family, friends, and the medical community united to define life by its beauty rather than its length. On the day Thaïs turns two, her mother, the author Anne-Dauphine Julliand, learns that her child has an untreatable genetic disease, the rarest of the rare, a silent disorder that will slowly paralyze her daughter's nervous system and kill her. Metachromatic leukodystrophy - MLD - is the diagnosis. There is no cure.
While the disease may be grim, neither this book nor the people in it are. Grace, dignity, and most of all love mark the lives of all those involved in the care of Thaïs. Julliand does not play down the pain of her child or of her family, or the exhaustion, discouragement, or burden each of them carries. She promises her daughter a full life - not a life like other children have - but a happy life, a life of love. Thaïs's family and the medical staff around her fight to provide comfort and efficient care, to conserve her dignity, to give her love, to add life to days when "we cannot add days to life."
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Definition of Strength with Grace
The diagnosis setting in.
I have not but I must say that the tone and intonation of her voice made the harsh reality of this story much easier to hear. Without that, along with the emotions I heard during the hard parts, I could not have continued had the narrator been so tender. It was like my hand was being held while walking through something scary.
This is a tragic story, told with such tenderness and grace that it turns out to be a great lesson in gratitude. To celebrate what one has in front of them-to acknowledge anguish but to know that life is so short that the celebration of life as it presents itself is always cause for gratitude. What a beautiful way to teach awareness and the reality of a disease that most of us have never even heard of.
I also love the big brother. That his heart is so huge. He, in turn, teaches his parents about how to be realistic in their teaching to him, and to us. Bless his heart!