Happiness
Happiness is sometimes found in a little corner,
the proverb says…
It's even often disguised behind a large fate, a heavy handicap, a serious limitation.
Our story started in a very nice way…a prosperous
birth, a nice shapely boy, two super-happy partners, totally ready for a dedicated
parentship. The first years passed just as described in booklet. He will become
a very intelligent, skilled lad people said.
Then the clock-work started failing, one little wheel not turning fully around,
little nods with the head. The homeopath doctor didn't give any diagnosis, homeopaths
don't, it's all to be considered as a whole …Lots of tubes of little sugarballs
and strongly diluted solutions and later it became worse. More nods, a much
slower evolution in speaking and thinking …
The neurologist who we took Steven to for a diagnosis gave his opinion as epilepsy,
syndrome Lennox-Gastaut. Characteristics: typical EEG-pattern, fast mental retardation
and seizures which are very difficult to control. Something broke in us… the
past was so beautiful, the future so bleach. These were periods of depression,
unbelief, dismay, and the always coming-back question 'why us?' We couldn't
understand that the God, who was always told to us to be a loving father could
do this to us …
You know, seeing your child going backwards in intelligence is completely heart-breaking.
Acquired skills he had now disappearing. Well-known words losing their meaning.
Drawing capacities deteriorating. Known melodies and poems not able to be recited
any more. Familiar objects and persons not being recognised any more …
We had no choice but to go forward, because life gently pulls you forward wether
ypu want top go forward or not. Life does not let you or your feelings to stay
still.. We became accustomed to having a child with a severe handicap, andvery
slowly this became familiar to us and we were forced to finally accept it. This
acceptation can also be resentment of " why has this happened to us"?
We were forced to accept our child fully, as being totally ours, a child whom
we were willing to give everything he needed, and and we accepted and loved
him for what he was, a "precious gift of God".
We still needed to take the biggest step and accept and realise that Steven
was in fact a happy boy, enjoying life in all its simplicity. How could we be
so blind as to not see this earlier, and realise that it was not 'bad luck'
Steven revives after a heavy seizure to so much love and caring and immediately
smiles when recognising us. His brother -his idol - passes him and gives him
a loving tap on his cheek. He awakes after a long deep sleep and full of hope
to start a new day. He turns around pots and pans in a hungry way, trying underhand
to take away a half-baked piece of meat and his tongue enjoys the taste of finally
full-prepared food .
In the living-room you may experience Tina trying to caress your arm with awkward
spastic movements, you enjoy playing hours and hours with little cars, which
by friction produce movement and noise. You enjoy looking hundreds of times
at the same pictures of family and friends …
These are such special times and with such a great show of loving and caring
.
Your needs are so restricted, Steven, they're so easy to be accomplished, all
your dreams become realities. Simplicity is your motto, you don't care about
worries. The nasty events you deal with from to time to time, are immediately
forgotten.
It's so easy to make you happy. That's the essential wish every parent wants to reach for his child ?
Happiness is sometimes found in a little corner, and that's a lucky thing …