Testimonials

WHY? WHY HIM? WHY US?

It is very difficult to describe to anyone unacquainted with the problem what it means to live with a disabled person, whether child, adolescent or adult. It is a hard, demanding, complex and exhausting task that can sometimes seem beyond our capabilities.

But we have to take it on, every day and often every night. Not only do we have to come to terms with the constant presence of the disability, we must also contend with the maze of formalities, hospitals, insurance...

We have to find answers, time and again, to all those nagging questions, the chief among which are: Why? Why him? Why us?

And we must cope with administrative problems that are sometimes in fact ludicrously trivial but in the circumstances appear disproportionately large.

What are the benefits to which we are entitled?

What type of care does the child need?

Are we doing the maximum possible?

Or could we be doing even more, and doing it even better?

This is the stuff of our everyday lives. But our children’s future must also be one of our primary concerns.

We must think, already, about the time when they will find themselves without the love and the constant presence of their parents.

What needs to be done?

What is guardianship, and what type of guardianship is advisable?

Who should be appointed guardian?

Who appoints the guardian? Where is information on this available?

Where do you find the judge dealing with guardianship? Is it necessary to see a notary?

These are the questions that we, and perhaps you too, are asking.

It should be the aim of every one of us to appoint -- today -- the guardian who will be morally responsible for the child and who will manage his financial affairs. It is not always easy to find people of this kind who can help him.

So let us learn to pool our individual skills and knowledge for the welfare of our children. Our children are not to blame for their illness any more than we are, and it is vital, in the circumstances, to avoid not only petty arguments and grudges but also any feelings of shame or rejection. It is essential to have a close-knit family circle and a group of sincere and actively involved friends. In subsequent newsletters we will take another look at these question of our rights and theirs, and of the responsibilities of parents, family and friends.

Jean-Pierre Boursat, Aurélien's father