A mother’s view
I’ll skip the period when we first learned the diagnosis and the long journey that we have completed since then. I want to share a little victory with you.
From my point of view, Kačenka began to radically improve both physically and mentally the moment I fully accepted my beloved little girl along with everything that Rett syndrome has brought into our lives.
The moment I stopped waiting for a “miracle from above.”
The moment I stopped giving energy to that “horrible disease.”
The moment I stopped listening to advice from people who don’t live “my” life with a handicapped child and have absolutely no idea about the hurdles that I must overcome 24 hours a day, every day. The moment I decided to be happy with my little girl any way possible. To enjoy life, to travel, to fly by plane, to swim, to go sledding, and so on. To accept my “fate” was far from easy. Anyone who has accepted a fate they didn’t exactly wish for will know what I am talking about.
Unfortunately, our society is focused on forming strong, resilient, assertive and adaptable personalities. Our children – and, by extension, we – are somehow unbecoming. Of course it is beautiful that every being possesses a certain potential for perfection, but we pay a great price before we can overcome our own and outside barriers in order to get there. Even today, I struggle with moments when I have to convince myself that I should be glad that Káťa is my patient teacher, my untiring admirer, and my nearly always good-humored companion. In short, my blessing. Most of the time, they are moments when I am fighting for my and her dignified existence. Moments when I am trying, after spending all day looking after her, not to pass out from fatigue. In view of the fact that our society is exclusively focused on providing care for the sick and is not particularly interested in improving the quality of life of the caretakers, we parents must look after ourselves as much as possible.
In brief, I think that our children will not be made happy by us simply enduring life with them, but by us trying to live a happy life for the time that we can be together. It should be more than clear to us that a “happy” parent means a happy child.
It is perhaps the greatest task that we could do for our children and ourselves. And so I would like to thank everyone who has joined us on our journey without ever having to. Please, let this be the first advice that we give to the parents of handicapped children: May you enjoy your time here and what you have been given, even if you never asked for it.
The best THERAPY of all therapies is to live our lives with our children, happily.
Thank you. Yveta Vyštejnová and Katka Vyštejnová
