Blog · September 14, 2016

A Sense Of Purpose

Almost every day, as I walk by Nicky or get him something, I notice he’s busy watching a “how to” video on how to “cook” something. When he was younger, he would often help me make the cupcake batter or would insist in putting the batter in the cupcake liners or would help putting the sprinklers on. He would be so excited to eat a fresh cupcake, and I would make sure I would make some kind of frosting of his liking and would also make a hole in the cupcake for him to get as much frosting in there as possible so he could eat it. His favorite show is Top Chef or any of those Baking Championships! We were in the hospital once for an infusion when he was younger and when he put it on the Food Network I asked him what career he would have if he had no restrictions whatsoever, and he immediately said “pastry chef”.

screen-shot-2016-09-14-at-13-58-44I know this may sound strange, considering he can’t even eat anything that isn’t extremely mushy, but he’s always had this strange love affair with food. Maybe is because he can’t eat that this has become an obsession, but I am convinced that if EB would disappear tomorrow, he would run, not walk, to the nearest culinary school. He’s THAT into it.

This makes me happy and sad at the same time. Happy that he loves something, sad he can’t pursue it. As the years have moved on and EB has taken a toll on his body, just “moving” has become a source of great stress. He no longer joins me in the kitchen to help me make cupcakes, it’s too hard. That is sad for me, as a mom, to see.

I’ve always been amazed at children that, like Nicky, know what they want to do when they grow up. I sure didn’t. I watch those pint-size chef on either Masterchef Junior or Kids Baking Championship and my mind is blown. I watch these kids as young as 8 prepare a full fledge meal while I still cringe when I see Connor with a knife (and he’s 13).

I firmly believe that some of us are born “knowing” what our purpose is. With Nicky, while becoming a chef may very well remain a dream, fighting to stay alive may be his purpose. Perhaps his purpose is to spread love. He gives me so much of it. Perhaps his purpose is fighting against all odds. Endure. He’s the epitome of “hanging in there”. There is such a sense of heaven when I look into his angelic face that I know he’s here for a reason. I know there is a heavenly purpose for his suffering. There has to be.  We all matter, we all have purpose.

Love & Light,