The Bukowski Family Story

May 06 2011

Posted in Events - Past

“The NF Game”
Bukowski Family Firstgiving Page

Some new parents know the nervous feeling
Of wondering if their baby will be well
Or if their genetics will be revealing
A disease that only time will tell.

Such was the case with our newborn son.
He was fine, though (no worries there),
Except for birthmarks (there were more than one),
Which were no big deal—we needn’t care.

But they were the first signs there
Of a disorder called Neurofibromatosis—
A genetic disorder that would tear
Our hearts upon hearing the diagnosis.

Flash forward twelve years
To the present day:
We’ve shed many tears
Along the NF way.

Through eye exams and MRIs,
All day appointments,
Pokes and prods that made him cry,
Good news and disappointments.

He was suspected of having
A tumor in his brain.
After taking the MRI, after waiting:
“No tumor.” It’s all part of the NF game.

Yes, it’s all part of the NF game: 
The waiting, waiting, and still more waiting
For symptoms to develop (or to stay the same).
It’s just so unpredictable and frustrating!

Our son is one of the lucky ones,
For which we are thankful every day.
He can still live a life that’s fun
And learn to live with NF along the way.

Still, his mild case has a down side:
Scoliosis, orthotics, Lisch nodules are there.
Taking him to specialists on this NF ride
Has become a way of life, a burden to bear.

The scary part is never knowing
Where the NF game will lead us to;
The crying, the pain, the hurt is showing
Whenever we pray for God to get us through.

That’s the NF game that we play.
(There’s a reason for it, to be sure.)
We stay positive and faithful along the way
That prayers will be answered and they’ll find a cure.

Please support our family’s efforts by donating to our Firstgiving Page.