13 Aug 2008 01:24 PM
Special Needs Dad
I am the father of a special needs child. I had the dream that every
father has, a son, a son who he can live vicariously through. Sports,
sports and more sports. That dream became a nightmare.
At four months old we were at the hospital because my son was having
infantile spasms (seizures that look like a jackknife dive). It was
them that my wife and I were told that we now have a long hard life
ahead of us and that we should not expect my son to develope very much.
We were told that he had microcephally (small brain or his brain did
not develope as it should have). Since that time, he has not laughed, walked, rolled over, sit up, talk or eaten properly.
The depression we experienced was only beaten out by the extreme sleep
deprivation we experienced for two and one half years. Due to his
seizures, he did not sleep through the night and was up three to five
times a night. Our personalities changed fo rthe worse. Four things kept us going; we do not quit, we had been together since we were teenagers, my daughter and my son.
We have come a long way since then, now six years have gone by.
Sleeping throught the night was the best gift ever that my son has
given us. We have routines that allow us to "normal things", we take
him everywhere. He is the toughest person I know. He is progressing
slowly, but progressing.
The inner pain that I have is at a managable level. But we are still
rebuilding our lives while keeping it as normal as possible. My
daughter has been exceptionally uderstanding and has benefitted from
her brother's experiences.
I have many stories and thoughts about our experiences. I am a typical
male who does not usually share his thoughts or show feelings. Since we have emerced ourselves iin the special needs world, I think I am softening up.
I plan on sharing my experiences in this Journal. Call it self therapy.
I do not believe in "he is a blessing....you only get what you can
hanlde". I am angry that my son has to stuggle through life every
second of the day. He never had the chance to experience one "normal"
day.
And for the record, I would not trade my boy in for anything.
Till next time,
B
www.differentneedz.com
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