This is a poem written on the occasion of the TSA's 40th anniversary by TSC community member Alice Dew.
Tuberous Sclerosis is what he said,
All sorts of thoughts running round in my head,
I went to the library with paper in hand,
No google back then as a helping hand.
All hope was lost, after what I read,
The feeling of dread filled my entire head,
There was one good thing I came across,
A telephone number, for Janet Medcalf.
What was this bombshell, how could it be?
Affecting 3 generations, including me.
Days into nights, so many questions to ask,
What was I waiting for, just get on with the task.
Janet answered quickly with those two new words,
I felt so much better with what I now heard.
A Mother herself I was so pleased to find,
Such a lovely lady, so knowledgable and oh so kind.
She just understood what we were going through,
And would call many times just out of the blue.
The first call now over, the journey began,
Numerous appointments, there’s so much to plan
Fighting they said, that’s what you’ll do
ME, a fighter? I wouldn’t say boo
But they were right, fighting became my way of life,
For the right treatment, and tests and education alike,
Living with TS has been so hard at times,
Hearing the repetition of so many rhymes,
And listening to the same video over and over,
At times it really was hard to stay sober!!!
Our TS family is like no other,
I feel they are like sister and brother,
So many miles separate us all,
But the bond we all have is unbreakable.
40 years ago those Mums around a table,
Who’d have thought they would be so able,
To form such a special bond, with expertise galore,
And after all these years, even working towards a cure.
I’d like to THANK both my sons and dear Mother,
But most of all I thank my brother,
Without him I would not have called you that day,
It was a real struggle, what would I say?
I’m so glad I didn’t take what I read as true,
And that I plucked up the courage,
To make that call to YOU. (Janet)
I’d like to dedicate this poem to the late Janet Medcalf,
my late brother Andrew, my late Mother Lucy,
and to all those we have loved and lost,
Taken too soon but NEVER, EVER forgotten!!
‘To provide hope for today and a cure for tomorrow’
Written by Alice Dew, September 2017.