December 28, 2016


Because the air is heavy of late, I hold on to what is essential and real.

"You are beyond sweet, and have accomplished more than I could have hoped for. You have fought to get to where you are, with a fortitude that is beyond understanding. There are no words to describe how proud I am to have you as my son, to be able to walk this path with you. You may not understand this, but I know that you understand that we love you."

                                              (from the dedication for his thirteenth birthday)

As you were born, long and hard years.

Provisioned with a mantle worn tightly;

a solemn oath to keep this plight in dignity, 

the suffering minimal,the light shining.

My struggles are as his breath and his breath has been my joy:

a shell discarded 

a new man born.

His heart beats without knowing,

the difference of life and death,

the power to calm and secure ruling over all adversity,

which is love.

                                        (poem based on the dedication to his twelfth birthday)



  1. I'm sorry segev has been uncomfortable. I hope he is comfortable being with you, his siblings and mother. I stumbled across this site and periodically check back to see how segev is doing. Wishing good thoughts from Minnesota and hope Segev is feeling comfortable.

  2. Good to see a post from you despite the heavy air.