Yesterday Benno turned 9. Last year his birthday was at NYU hospital. There were no presents from his parents. There was no party with friends. There was just family and an attempt to smile through it all. Jacob had just been diagnosed days before.
The hospital staff allowed us to go outside on a balcony and celebrate. And then it passed, like any other day.
And looking at Benno today, it is remarkable the transformation. It hasn’t been an ordinary year and by no means has it been an ordinary year of growth. He may be turning 9, but he is way beyond his years. His empathy, his sense of self challenged every day this past year.
Prior to turning 8, our world revolved around Benno. We spent our days and nights concerned about his phobias, obsessed with his lack of nutrition, etc. But that all ended on his 8th birthday. Benno spent 8 having to fend for himself in new ways. He didn’t have the overflow of attention from adults even with a new phobia added to his list, cancer. Often dealing with his anxiety on his own and sometimes not seeing his mom for days who was living with his brother at a hospital
Looking at these pictures, I wish I could whisper to Steve and I and tell them that not only would Benno survive this year, but would come out better, a new person, he calls this person “Benjamin.”
So world let me tell you about Benjamin.
He turned 9 yesterday and he will run the world by 13. He is beyond articulate. He has an opinion on everything and often is right. Painfully right. He will tell you how it is. But, he is also the greatest friend. When Jacob lost his mask the other day when they were playing outside with others, he took his off immediately for his brother. When Jacob screams and goes nuts, Benno will often raise his hand “I got this!” and will take the first attempt to calm Jacob’s nerves. And honestly, he has the better results than his parents.
He is a kid that randomly forwarded me this email after overhearing my conversation with Steve that I want to reach more than the 1% with Mind the Gap. He took it upon himself to create a Mind the Gap digital sign in his roblox game and then wrote the customer care to try and learn more. All of this without my knowledge. Trying to lighten my load. Always trying to lighten my load.
And this Benjamin isn’t afraid of much. 2 years ago I would battle to get Benno on a beach. He hated the feel of the sand, he was scared of the water. If someone told me at NYU hospital that day, that a year from now your son would spend his birthday SURFING, I would have laughed in their face. SURFING?! Benno doesn’t like the beach and is petrified of the ocean.
But Benjamin does.
Very proud of my boy. Happy birthday my love. You have always had incredible power.
You are the sun. You are the light. In this year, you learned how to control your power and use it for good. To bring light to all in this world. You give me hope. Your light got our family through the darkness.