Jack...The Story So Far
Jack is our eldest son.
He was born in August 1995 with complex neurological problems and was diagnosed
with M-CMTC Syndrome when he was 8 years old. He suffers with Epilepsy,
Diabetes Insipidus, Gastrointestinal Reflux, and Hydrocephalus. Jack
cannot walk and cannot talk. His condition is life limiting.
Reading the above paragraph
is enough to fill anyone with a sense of gloom and doom. I figured that I
would get all that out of the way before I proceed any further. And now
for the good stuff....
Jack is the most amazing
thing to have ever happened to us. He has a smile that lights up a room
and the cheekiest laugh imaginable. Jack vocalises in his own special
way....being his mother I have to be biased and say I understand everything my
child says to me...even though he can't "talk". He gestures with his hands
and facial expressions. He taps his mouth to tell us he's hungry or
thirsty...he bites his fist when he's mad....he smiles from ear to ear when he's
happy - which I have to say is most of the time and he turns his face towards
you, pulls you to him and presses his lips against your cheek when he wants to
give you a kiss. In recent months he has also begun making very definite
choices. He will reach out and touch what he wants...especially a choice
of condiments when its dinner time (food is his passion in life). He
anticipates your decisions and will help you to help him to get dressed.
He also stands with support (leg splints which he is not a huge fan of) and uses
a standing frame to participate with his classmates in standing activities.
Jack has touched the lives of
everyone who has ever met him. He is well known to the staff at our local
hospital and to anyone who has had privilege of working with him.
Jack has a brother and a
sister - Matthew and Hannah. They adore him beyond belief. Jack
especially likes giving his sister cuddles and kisses and I often find Matthew
reading to Jack or in his room at night talking to him. That's the way it
has always been with my children - and the way it will always be.
As for us, Jack has taught us
so much. So much in fact that there is not enough room to write it all
down - and actually probably not enough words to describe it. I look back
on my life before Jack was born....and I can't remember how it used to
be....almost seems like it happened to someone else. I was a different
person back then. Looking to the future - we don't know what it holds.
With Jack it's a day to day existence. We don't tend to plan much -
because you can guarantee that Jack may well have a bad day with his fits - or
he will be unwell and will require a trip to hospital. Obviously the older
and bigger Jack gets, the bigger his requirements become too.
I understand what it's like
to have a child with Special Needs. I know every aspect of it backwards!
I hope this website will manage help other parents - especially those who are
just being initiated into the crazy world of what having a child with complex
needs means. I also hope that it will help everyone else who visits this
site to understand a little bit more about disability.
I first created a website
telling Jacks story in 2004. But I then took it down last year so I could
re-vamp it all and update it - and it's only now that I have got round to
re-establishing Jack's home on the web. There is so much more to come, so
please do check back.
Also please feel free to
contact us if you wish.