The Lustrum

Five years is a long time,

The passing of 1825 days, however, hasn't diminished my memories. Sights, sounds, even odors familiar from Steven's first hospital stay can still cause my stomach to turn, my eyes to tear, my heart to break.

and so much has changed.

Steven was a high school sophomore when he had his first brain surgery. He's now a college junior, of legal age, making plans for graduate studies.

My Mary was just in second grade when Steven was first diagnosed with this disease. She's now a teenaged, clothes loving, mall walking, boy watching, texting fiend.

I've aged.

We've had the opportunity to attend two VHLFA conferences and learn more about VGEF, HIF, genes and cells, processes and proteins. We've also been blessed by meeting many kindred spirits fighting the same fight.

I've had the chance to become more involved in the family alliance, at a local level, and now lunch with several VHL warriors monthly.

We raised funds and raised awareness for the first time ever.

But because some things haven't changed,

This disease carries on in its own insidious way in my sweet boy. His two small benign brain tumors have turned into eight tumors in the cerebellum/brain stem area and four in the spine. His pancreas is now muddled with cysts of varying sizes, and his kidneys now also show signs of the disease.

One small and crafty gene continues a path of destruction.

And my sweet son remains unbowed
with his grace,
and his determination,
and his sweet, sweet spirit.

we need to remember the past

That first night home, after settling Steven in bed and checking both the incision at the back of his head and the small sutured spot on his upper leg, I sat at the computer and researched hemangioblastomas. I read statistics that not only clinically diagnosed my son with von Hippel Lindau disease but also wanted to cut his life in half.

I'll never forget those printed words...how they looked, how they sounded, how they felt.

Those few simple words were a catalyst.

while we reach for the future.

Words of pain can also promote great change, change beyond our wildest imaginations. We now know truths that only the privileged know. We understand that another breath is a miracle, and we know that life is made of moments.

And we know and believe that
with a bit more research
and lots of faith,
a cure will be found.
Our sweet son
must have the privilege
of living this good life
filled with hope.