Some days it’s selfish; Some days it’s attention seeking; Some days it’s so bitter the only way to survive is denial or escape; Some days it’s so numbing you can’t tell the difference between joy and pain; Some days it’s so loud the only thing you hear is the echo of death ringing in your … More Some Days…

Summer again.  Well almost.  Tomorrow David graduates kindergarten (I know, right?!), and whereas our hearts couldn’t possibly be any prouder of our kind, bright, compassionate and tender-hearted little graduate, we feel the sting of missing his little brother extra deep this week.  It stings because it’s the very first chapter, beginning to end, that doesn’t … More Graduation

I see you. I don’t know the unique ache of your heart; maybe it’s a recent diagnosis – you or a loved one. Maybe you’re unsure if your sister, dad or co-worker will live through the holidays this year. Maybe you’re in the hospital at this very moment and have been told it could be … More To Those Who Are Hurting This Holiday Season

I can tell Joey’s body is tired.  Tired but still fighting hard.  Seizure monster visited again this week reminding us there’s a devastating disease destroying our son’s little body and that his time with us will be short.  We certainly don’t need reminders but it’s amazing how much you adapt and adjust when survival is … More The Power of Choice

Joey is 3 1/4 years today.  A milestone.  A victory.  A reason to be thankful and count our blessings.  With every new season there’s quite a bit of adjusting.  The last four I’ve found myself surprised we got a little more time.  Grateful as well as unsure and a little scared… What should I expect? … More 3 1/4 – A Milestone

I can’t tell if the clock is ticking faster or if we’re at a standstill.  It seems our lives are on hold but the world keeps spinning.  The days are slow but the months go by really fast.  Three months since Christmas, one month since Joey’s birthday and a week since my mom left.  I … More Preparations, Fear of Joy & The Community of Brokenness

Dear son, It’s early morning. The smell of coffee is filling the house. Pale, gray morning light is peeking thru the blinds – enough light to see but barley enough to wake up and greet another day. It is as if the sun is too tired to shine through the dreary January sky. It’s quiet, … More Release & Let Go

“Nobody has ever measured, not even poets, how much the heart can hold”                             – Zelda Fitzgerald GM-1 is much like the enemy – it comes to kill, steal and destroy. We’ve seen it take so much from our son in such a … More “But the greatest of these is love”

Ever since Joey’s diagnosis last year birthdays, holidays and anniversaries have brought with them a mixed bag of emotions. When we celebrated David’s 4th birthday last November I wanted nothing but a joyous occasion surrounded by friends and family – it was an extraordinary day filled with so much joy and happiness. Christmas was precious … More …”For better or for worse, in sickness and in health…”