Life

Von Hippel Lindau disease is tough,

Steven is one month out of his most recent surgery.

He is not yet able to drive because of the resulting dizziness.

His eyes continue to lose focus because of the nystagmus.

I noticed last night that his gait is definitely off.

He is healing much more slowly than I expected.

My fear is that this is not simply a "healing" process this time but a permanent reaction to multiple tumor resections in the same area of the cerebellum.

and it never ends.

People ask how Steven is doing.

I try my best to explain the intricacies of his life at the moment.

I cannot truly describe the degree of dizziness or lack of coordination.

I can barely grasp the level of grief that I feel when I see my son struggling.

I truly don't know how to portray with words  my son's determination and grit.

I can't begin to describe the desolation of this disease.

The truth is that unless you live the life of multiple brain tumors, 

you will never understand it.

But we are stronger than any mutant gene.

We live in happiness
for time with family
for simple moments together
for good food
for peace.

We live in joy
for cherished moments
for scars that show miracles
for bodies that heal
for better days
for living.

We live in hope
for more healing daily
for less disease progression
for better days
for a cure.

We have hope.

For happiness leads to joy
And joy leads to hope
And hope is all we need.