Gabriela & Edmond Richer’s Parent Diary: January, 2010
This February Adela will be 20 years old.
For the majority of people 20 years of age is a time of new beginnings, of learning independence, of important decision and a time to love.
For Adela as for all the other young people afflicted by Lafora life is closing walls around her leaving no space for any kind of personal achievements, goals, or even dreams.
Dreams, no matter how removed from reality have at least some connection with what is viable, and for our daughter the range of possibilities is very thin. While the outside world shuts a heavy door in her face, her personal world must open larger as she is more and more dependent on us for necessities of daily life.
How many of us give a thought to how much freedom there is in the ability to take care of ourselves and how myriads of choices and possibilities are open to us by simple fact of being independent.
She graduated high school in the summer of the 2008 and she has been at home ever since. Her universe is restricted to her room and she splits the time between books and TV shows. There is nothing else in her life. She is now in her ninth year of her disease, with a lot less of her former self.
Hands are shaking so badly that she can not hold any object for longer than two seconds. Writing or drawing is very difficult as the hand takes a completely different path from the one intended.
Walking is a very adventurous endeavor. Her brain cannot maintain a uniform rhythm of pace; it is either too slow or too fast, changing every half a minute. Legs are getting confused in the process, tangle a lot and a fall is imminent. This adds to the drop attacks when in a split second, with no warning what so ever, the entire body becomes limp and she falls down. These are something very traumatic for her to suffer and for us to witness and they stem terror in our life by the impossibility to predict them. Next thing Adela is back in bed where at least she is safe and where she spends now most of the time.
In our walking session Adela wears knee, elbow and palm pads, she is sustained by either one of us or by both and I believe we make quite an appearance in the park. Her legs are permanently bruised and scarred as between two falls there is no time for them to heal. As to this time the idea of a wheel chair brings big tears on her cheeks and it represents a serious psychological impact.
In the last six month a new feature of Lafora disease developed. In the past the mioclonic seizures happened mostly in the arms and legs. Recently they started to manifest in the upper body too.
Imagine standing in front of the mirror, brushing teeth and all of a sudden the torso is involuntarily pulled from the vertical position in any which direction. Depending on the amplitude of this force sometime Adela is able to regain her balance, bur way too often she is on the floor again.
Her wonderful, wonderful, mind could not remain unaltered either. First it is the course of the disease of which little is understood. Add to that nine years of heavy medication for seizures control, for sleep disorder, for emotional troubles, and one can only imagine how ravaged a brain can get.
Presently it takes long minutes for Adela to make a simple arithmetical computation. She reads a lot, but in a slow manner as her brain takes a lot of time to process the information that the eye sends. And this is our smart, all subjects AP student up to the tenth grade that we are talking about.
In a weird sort of way her memory is still good. She remembers well the facts and characters from her readings and sometimes she is able to quote from her favorite TV shows or books. In a good day she will present us with a piece of her wonderful wit and sense of humor that will give us a glimpse of how beautiful life could be. But the disease is not forgiving and every single day is taking away a bit of our beautiful daughter. Her speech is impaired. Every so often the words are slurred as the brain gets random electrical discharges. The train of thoughts is interrupted many times during a sentence to the point that she forgets the idea and she gets very confused.
During all these years her spirit was strong and brave. She endured innumerable seizures at home, at school during classes, at home coming parties, in all sorts of public places, at family gatherings, witnessed by strangers or friends. I believe it takes a considerable amount of heroism to show up to a class where you previously had a seizure. And this is not about stigma. Thanks God we live better times when most of people are beyond the misconceptions of the old ages. This is about being fifteen, or sixteen, or seventeen and being so important to project a fine image. I believe that it is the time when we care the most about how other people perceive us.
Academically she needed to renounce the advanced placement classes for regular classes, then regular classes for special education, and eventually she was not able to perform to any kind of test.
When her friends were making plans for colleges, talking excitedly about life what was unfolding in front of them, our child was choice less.
Eventually she lost all her friends. They scattered all over the country gone to meet their lives. No phone calls, no emails, nothing to connect her with the school years like she has never had a past. Now she fights for her life. Which spirit will remain unbent to such adversity? Maybe that is why more and more often she is sobbing in her room.
As for us, it is so hard to use words of encouragements without a huge sense of fraud.
So, are we up for a celebration on her twentieth birthday? Yes, we are, because she is our beautiful twenty years old daughter who can still turn us a larger than life smile, and most importantly, who is still here, with us.
Life is worth celebrating and we have infinitely more compared to other parents who lost their children to Lafora or to any other kind of unmerciful disease.
Provided by: Gabriela & Edmond Richer