Pure love

 

Not too long ago I was speaking with a man who was struggling with the fact that his son’s delayed development could be a sign of autism. He was distraught at the implications for what it could mean to the future happiness and welfare of someone he loved so profoundly. 

It is still too early to tell in this particular case if he will develop autism, and if so, how severely. Nevertheless, any parent will understand how he must feel. As a wise person once said to me, “As a parent, you are only as happy as your unhappiest child.” 

My experience on the user’s committee of the MAB-MacKay Rehabilitation Center has taught me something very important. It seems that no matter what parents go through when first they learn of their child’s handicap – shock, despair, worry, regret – it doesn’t take long for their feelings to transform into pure love. The bond with this ‘challenging’ child is stronger than any other. Wheelchairs, hearing aids, and white canes be damned. 

You may have noticed the same phenomenon with some people that are seen as difficult. Despite giving the impression that they hate most of humanity, they sometimes are great with babies or with nieces and nephews. They may even be extremely attached to their pets. This is because there are no expectations. A person who expects a lot from others is often disappointed. This disappointment can obscure the connection that the human heart is capable of. With a handicapped child none of that stuff gets in the way. The bond between a parent and child remains pure and profound. 

A smile is a smile. Whether the smile is from a major achievement or the result of a simple tickle or wink, it is an expression of joy. And when the child feels joy, so does the parent. 

At the risk of repeating myself, here is something I wrote in today’s edition of Metro: 

Pure love
(Source: L’amour à l’état pur. Journal Métro, October 22, 2013)
Voir plus bas pour la version Française.  

The good news is that medical technology is now able to prevent or treat many handicaps; Meningitis is far less likely to cause deafness, spinal conditions can better be treated, and Poliovirus is nearly extinct. The bad news is that many conditions remain unpreventable and untreatable, and certain conditions related to the age of mothers, such as autism, are on the increase. 

Every once in a while a parent has to confront the reality of raising a handicapped child. When first given the news, most are quite devastated. Dreams of college educations, sports scholarships, a house full of grandchildren, get replaced with endless visits to hospitals and constant worry over the child’s long-term welfare. 

My daughter, Thi Thu, is deaf. It is not a major handicap – she communicates well in sign language, has many friends, an infectious laugh, and a fun personality – but she still lives in a very limited world. While her younger siblings drive, go to college and work part-time, she is still in high school at 19. She is very reluctant to interact with the hearing world and is still very much dependent on us, and will remain so for a number of years yet. 

Thi Thu spent many years at the MAB-MacKay Rehabilitation Center where I had many occasions to see children with varying degrees of physical limitations including some very severe ones. If a prospective parent ever walked into a place like that and saw all the children in wheelchairs they would probably panic at the thought of having such a handicapped child. But do you know what? I don’t think any parent of a handicapped child would want to trade places with another parent. That’s because love is love and a handicap doesn’t change that. 

You may believe that a child bringing home a diploma from college would make you feel better than one bringing home a lopsided cupcake from cooking class but oddly enough that wouldn’t be the case. This is because the love felt at that moment is pure. 

In fact, it can often be stronger. If we think about babies, they are all perfect. They aren’t old enough to express anything except raw emotion: joy, hunger, irritation, curiosity, laughter. There are no conflicts, no angry reprisals and resentments, no estrangements. The innocence of babies and young children highlights the direct connection between a parent and a child. 

This pure connection is what parents of handicapped children feel. The child’s inability to function as other adults – to speak and study and function independently – does nothing to disrupt that connection. It is 100% love, and that’s as good as it gets. 

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Voici la version Française: 

L’amour à l’état pur 

Bonne nouvelle : la technologie médicale peut maintenant prévenir ou traiter de nombreux handicaps; la méningite ne risque pratiquement plus de causer la surdité, les malformations peuvent être mieux traitées et la poliomyélite est pratiquement éradiquée. Mauvaise nouvelle : de nombreux troubles ne peuvent encore être prévenus ou traités, et certains troubles liés à l’âge de la mère, comme l’autisme, sont en hausse. 

De temps à autre, des parents doivent relever le défi d’éduquer un enfant handicapé. Lorsqu’on leur apprend la nouvelle, la plupart sont atterrés. Les rêves d’études universitaires, de bourses sport-études, d’une maison remplie de petits-enfants, font place aux incessantes hospitalisations et à la préoccupation du bien-être de l’enfant à long terme. 

Ma fille, Thi Thu, est sourde. Ce n’est pas une handicap majeur : elle communique bien en langue des signes, a de nombreux amis, un rire contagieux et un caractère joyeux, mais elle vit tout de même dans un univers restreint. Alors que ses frères et sœurs conduisent la voiture, vont au cégep et travaillent à temps partiel, elle fréquente encore l’école secondaire, à 19 ans. Elle a beaucoup de réticence à interagir avec le monde entendant et elle dépendra encore beaucoup de nous, pendant quelques années. 

Thi Thu a passé de nombreuses années au Centre de réadaptation MAB-MacKay, où j’ai eu l’occasion de voir des enfants ayant des limitations physiques à divers degrés, dont certains très prononcés. Si un éventuel parent entrait dans un tel établissement et voyait les enfants en fauteuil roulant, il paniquerait probablement à l’idée d’avoir un enfant handicapé comme ceux-là. Mais, vous savez quoi? Je crois qu’aucun parent d’enfant handicapé ne changerait de place avec qui que ce soit : l’amour c’est l’amour, et un handicap n’y change rien. 

Vous croyez peut-être que vous vous sentirez mieux si votre enfant arrive à la maison avec un diplôme universitaire que s’il vous apporte un petit gâteau un peu croche confectionné à son cours de cuisine, mais, curieusement, ce n’est pas le cas, parce que l’amour ressenti à ce moment-là est pur. 

En fait, ce lien peut souvent être plus fort. Quand on pense aux bébés, ils sont tous parfaits. Ils ne sont pas assez vieux pour exprimer autre chose que des émotions à l’état brut : joie, faim, irritation, curiosité, rire. Il n’existe pas de conflits, pas de représailles, de ressentiment ou de brouilles. L’innocence des jeunes enfants met en lumière le lien direct entre parent et enfant. 

Ce lien à l’état pur est ce que ressentent les parents d’enfants handicapés. L’incapacité de l’enfant à fonctionner comme les autres (parler, étudier et être autonome) n’altère en rien ce lien. C’est de l’amour à 100 %, et il n’existe rien de mieux. 

Tagged as Autism, Down's syndrome, Handicap, MAB-MacKay.

Posted in Happiness, Life.

Posted on 22 Oct 2013