Thumbs Up for Life with Down Syndrome

Today is World Down Syndrome Day, and so this evening my friends and I were reflecting on the value of those with Down Syndrome in our lives.

My favourite story my friend shared was about a man named Peter for whom she cared for one year while working as a live-in assistant at a L’Arche community in Montreal.

Peter was in his 30s and his kidneys did not work well. He was on dialysis and, because he could not urinate properly, he also had a catheter that, in his case, was surgically changed every six months.

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“We Gradually Deserve Those Who Demand to Be Helped”

There is a little book by Antoine De Saint-Exupéry called Letter to a Hostage. In the first part, the author paints a scene of emigrants aboard a ship. Even without more context than this, this passage is remarkable:

How to construct a new self. How to remake the heavy skein of memories? That phantom ship was crowded, like Limbo, with souls unborn. The only ones who showed any semblance of reality, so much so that one would have wanted to touch them, were those who, belonging to the ship and ennobled by real duties, carried the trays, polished the brass and shoes and, slightly scornful, served the dead. That slight disregard of the staff towards the emigrants was not due to their poverty. They were not lacking in money, but destiny. They were not attached to any home, to any friend, to any responsibility. They played a part, but it was no longer true. No one wanted them, no one would call on them. What a thrill it is to receive a telegram in the middle of the night, summoning you to the station: “Hurry, I need you!” We soon discover friends to help us. We gradually deserve those who demand to be helped. Of course no one hated my ghosts, no one envied them, no one bothered them. But no one loved them with the only love that is worthwhile. I thought: as soon as they arrive they will be taken into welcome cocktail parties, consolation suppers. But who will ever knock at their doors, begging to be let in. “Open, it’s me!” A child must be fed for a long time before he can demand. A friend must be cultivated for a long time before he claims his due friendship. It is necessary to spend fortunes for generations on repairing an old ruined castle before one learns to love it.

Such realities are best explained through stories and scenes and anecdotes; they are not abstract principles, though they are tinged with the mystery and depth that prevents them from being grasped, especially all at once.

Indeed there are many emigrants passing through life like souls unborn without ties and without purpose. And among the dead of expressive individualists, what could possibly be the meaning of: “We gradually deserve those who demand to be helped”?

Yet, as usual, the clarity comes in the juxtaposition between the cocktail party versus the “Hurry, I need you!”

The human person, every human person, is ennobled by real duties and real attachments. The love that is worthwhile is not “Can I get a photo with you?” or “Here’s my card.” The love that is worthwhile is the demand of someone in need who says and who means, to someone in particular, “It’s me. I need you!”

Matters of Consequence

This evening, over a dinner reunion with a dear friend of mine, she confided to me that she did not consider herself to have been up to anything interesting lately.

As soon as I heard this, I objected because my friend most certainly has been up to a very many interesting things, and it is only a matter of clarifying what “interesting” truly means.

If you have ever had the delight of reading – or, even better, having read aloud to you – Antoine de Saint-Exupéry The Little Prince, you will remember the Little Prince’s reproach of the those grown ups who are ever concerned with matters of consequence:

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Treasuring Time

Yes, even on my birthday I keep my death before me. It makes life sweeter by increasing my sense of its preciousness.

A friend of mine gave me a birthday card with this quotation by Josemaria Escriva: “Time is our treasure, the ‘money’ with which to buy eternity.”

On my birthday, I am filled with gratitude and responsibility – gratitude for God’s generosity in giving me these years and responsibility to live and love well with vision, depth, and hope.

I am thankful to my friends and family who have helped me to treasure time in this season – to sincerely savour and cherish it rather than wasting time or wishing it were some other time.

There is no better time, and “my times are in [His] hands.” (Ps. 31:15)