Dear Alphée,
While Quebec Intellectual Disability Week ends, I want to shout from the rooftops how much the presence of people like you is a wealth for our societies.
How much we need you to step beyond the superficial. To bring us back to basics. To slow down and become better humans.
Exceptional
When you came into my life 19 years ago, I didn’t understand any of this.
I was full of fears despite the immense love I felt for you.
When you came out of my stomach, you were so soft. You couldn’t suck on my breast, or even the nipple of a bottle. I was expressing my milk which you could only drink with the help of a small tube and a syringe.
It took months of investigation in all departments of Children’s General Hospital before learning that Smith-Lemli-Opitz syndrome, a rare genetic disease, would make you extraordinary for life.
At first I thought it was the end of the world.
Until I understood that, on the contrary, it was the beginning of a new world.
A world full of adventures off the beaten track and full of emotions.
A world that we would make beautiful together every day, whatever the trials and losses we have to go through.
To achieve this, I had to understand that I should not compare you to others, but rather honor every day your “extraordinaryness”, the immense luck I have to be your mother and to learn thanks to you.
Happiness
You know Alphée, there are people who meditate all their lives to manage to live in the present moment, as you do quite naturally.
I see you catching happiness by happily jumping over obstacles. You have been able to create a rich imaginary world where you live fantastic love stories.
It’s one of your many magical powers!
Colin
Just yesterday, your big brother told me how much your presence in his life defined him. You made him more sensitive and more responsible. He became stronger because of you.
Without knowing it, you knew how to instill in him courage and joy of life, when the wind was blowing in his face.
This is also true for me, and so many others who have had the chance to walk small parts of the journey alongside you.
You’ve even saved a life already. Maybe two.
Take your place!
I can see that you don’t like being surrounded by too many people at the same time. That there are looks and words that annoy you. You feel everything.
Now that you’re grown up, I can offer you a golden rule as armor: don’t compare yourself to others. Honor your “extraordinaryness” and all your magic every day!
This is what I wanted to share, not only with you, but also with all the “extraordinaries” in our world and their loved ones.
I love you!