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ALS – The Parents : Jean et Mierelle

I was present when Jean and Mireille saw Veronique for the first time since she had been diagnosed with ALS. To be confronted with their daughter in a wheelchair weighed heavy on them. That first embrace between mother and daughter was a mixture of joy and deep frustration. Joyful to finally be able to hold Veronique in her arms. Frustrated, like all of us, at her inability to change her daughters’ condition. Among those first emotional exchanges I remember hearing the words: ‘Why couldn’t it have been me’?

Having recovered from the initial shock upon arrival that first day and as difficult as it often was, Veronique’s parents settled into the daily routines that now dictated most of their daughters life. In the mornings, they were there to greet their ‘princess’ for breakfast. Mireille was a never tiring force in the kitchen cooking up some of Veronique’s favorite French dishes. When  relieved of kitchen duty, Jean often attended to smaller tasks like vacuuming the floors, caring for the many flower arrangements on the dining room table or watering plants outside. At times, both parents would be seen massaging Veronique’s swollen feet.

In all, Jean and Mireille were blessed to be able to spend a full 6 months living with and caring for Veronique. During that time, emotions were unpredictable and tensions often ran high. There were good days and bad days. Days marked by denial and resistance, and others where there was space for acceptance. Even though we know death to be a normal and expected part of life, acceptance does not come easy for any of us. Least of all for a parent who is losing a child. Jean and Mireille navigated this difficult time with strength and courage and with the grace which was given them, first and foremost empowered by their deep love for Veronique.

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