March Madness

The last few weeks have been difficult for Kenny and family. In fact, this will be the first update that he has not personally reviewed. Starting in late February, early March Kenny began to lose more and more mobility and his ability to communicate has progressively diminished. About a week ago we had to stop his beloved wheelchair rides to the beach, and for the last few days he has been unable to get out of bed. Although he is often difficult to arouse and rarely makes direct eye contact when awake, he still responds to simple questions with a faint verbal yes/no, or by squeezing our hands once for yes and twice for no. Intermittent, but very severe (strong), hic-ups have plagued him in recent days. Attempts to treat the hic-ups have proven unsuccessful so far but we plan to try a new medication this afternoon. He continues to deny any pain and consistently indicates that he is comfortable. Incredibly, and to no one’s surprise, he still regularly manages a smile for visitors.

We remain incredibly grateful to friends and family for their continued support. The heartfelt texts and facebook postings as well as comments on have been uplifting. Many friends and family are taking shifts to provide respite and help us in our effort to keep someone at Kenny’s bedside 24/7. Several neighbors have even offered their homes to house overnight volunteer caretakers. The almost endless flow of food to our 34th street home is also very much appreciated.

As intimate as it is, we wanted to share a recent letter that Kenny’s father, Gary wrote one night when he couldn’t sleep…

It should have been me

He was a strapping young man with an infectious smile
He taught school during the day, was a student at night, tended bar on weekends
He surfed whenever he found time; he loved backpacking and the outdoors
Having lived abroad and traveled through much of the world, he has a genuine appreciation for diverse cultures and seems at home no matter where he is
As the first born in his family he became the protector of his sister and good buddy to his little brother
He has touched many and is loved by many

The big “C” struck suddenly, invading his brain long before anyone knew it was there
Everyone was shocked, this can’t be happening to him of all people
His love of life and support of family and friends from around the world fueled his drive to survive
Many months of treatments and drugs, but nothing seemed to stop the big “C”
Now on hospice, trying to make the most out of what time is left
Loosing mobility and independence, but spirit is strong
Memory is gone but he lives in the moment and continues to show concern for others with his endless thanks, smiles and shows of affection for those around him
Never once complained

Dad is heartbroken but also very grateful for the time we have had
Remembering the soccer games, bike rides, camping trips and family vacations
Thinking of all the good times and asking why it can’t be me instead of him
The pain is unbearable at times but taking care of him during these difficult weeks is truly a labor of love
I continue to draw strength from his courage and am proud that he calls me Dad

I am 63 and have lived a full life
He is 35 and full of life
He is the typeof person this world desperately needs
Why him instead of me

It should have been me.