Are We Lucky? – Words of Wisdom from My Father

At first look, it is a bit unbelievable how unlucky my life has been. I mean, not a lot of folk would think that it is lucky to have a brain tumor at age 25. And while the type of tumor was luckily benign, it was located in the most unlucky of places in my brain – smack in the middle of my brainstem! Every time I went to a new neurosurgeon or neurooncologist there was moment of double-take, where the doctor looked surprised and said, “oh, that’s not a good place!” It meant that my tumor was “inoperable” and I would have been out of luck if my family and I did not find a “cowboy” surgeon with the unique skill-set that was needed to save my life.

My luck turned around afterwards. I recovered from brain surgery, had to stay an extra year at Columbia, but got to meet the love of my life as an added bonus. Fast forward a few years, and Amanda and I were lucky enough to have a beautiful seemingly-healthy baby boy. Months went by with us thinking that we are the luckiest people in the world, happy, in love and enjoying our baby boy’s first milestones together.

But luck turned around again, with a rush to the ER, three weeks in the ICU where our son’s life hung by a thread and ended with a diagnosis of Hyper IGM, a 2-in-a-million genetic mutation that left our son with a faulty immune system unable to protect him. The only cure was a transplant, an expensive and risky procedure that meant leaving our home, our jobs and our family for at least six months.

After 10 days in-patient at Seattle Children’s Hospital, spending 24-7 with Idan, tending to his needs while serving his endless demand for entertainment and company, my father pointed out something very true. He wrote to me that “both of you and idan are soo sooo lucky that you are spending this time together and you are watching him grow and develop every second of his day…which of course means every second of your day… but in today’s world how many parents can say they are able to do this…” My father is right. Despite the circumstances and the hard and scary road ahead, we are so lucky to be able to spend this time with Idan. We are lucky to both be around to see him draw for the first time, and say his first words. We are both lucky to be around to see him so happy and playful and full of joy, 24-7. Sure, we have zero income for the next few months, and both our careers are on hold, but we are saving our son’s life, and getting to spend time with our baby boy while doing so.

When Idan is cured, and we are back in NYC, back at work, trying to balance work and family again, when Idan’s army has moved on to help the next little boy in need, we will know that we were lucky to spend so much time with our first born and watch him become the hero he is destined to be.