On the morning of Sunday, August 12th in a beautifully modest service with a minimum number of family and congregation members present, Herschel Zemel was called to the torah as a Bar Mitzvah.
When we had the opportunity to say a few words I didn't want to overwhelm Hayden or make him feel uncomfortable, as being put on the spot. So I will say it here instead. Sunday was all about him but it was also one of the best days of my life. While we are beyond blessed that over the years many people have made some pretty amazing things happen for Hayden, this wasn't someone else's doing. He had to commit to weekly lessons with the Rabbi-- albeit extremely modified-- but he still followed through. No one gave him an honor out of the kindness of their heart. This was earned.
Our guy who was gorgeous from the start, and had an alertness in his eyes that couldn't be ignored... who grew into toddlerhood with blond curls, a gigantic smile, and most contagious belly-laugh... had no idea he had fragile x syndrome. We of course found out when Hayden was seventeen months (almost to the day), but at the time it was nothing more than a diagnosis. More accurately, a name for why he was first sitting up when most babies crawl... and it was the name for why he only started crawling when most babies are confident walkers... and it was also the name for why he didn't become a confident walker until the age that most toddlers are already beginning toileting.
But what the doctors and specialists labeled as global developmental delay due to a genetic disorder, we learned to label as Hayden doing everything when he is ready, and not before. The verbal communication is what we longed for the most. We felt that he would eventually speak because he was quite engaging from the start-- he laughed when it was appropriate, cried when it was appropriate, and overall seemed just as in-tune to the world around him as he was to anyone right in front of him. Still his first few birthdays came and went and he did not yet have speech. He had Early Intervention (EI), plus private therapies, and then aged out of EI and started preschool. Still a couple more birthdays passed and very little speech-- barely a handful of words.
And then the summer he turned five, within a couple months after his birthday, new words almost suddenly emerged. When he returned to school in September his teacher called it a language explosion. You see... everything when he is ready and not before. This is also what I told myself upon thinking about him becoming a Bar Mitzvah... but in my heart I did hope it could happen during the Jewish calendar year of his thirteenth birthday.
About a week after Hayden's birthday when I first blogged about the big news, I said my simple hope is that when the official day comes Hayden will at least be at ease enough to follow through. What I can tell you now is that after the service on Sunday both the Rabbi and his brother (also a Rabbi) noted Hayden did so well, that it could not have gone any better. And the fact that Hayden actually repeated part of the blessings as the Rabbi recited them... well... that is right up there with the summer when he turned five.
Following the service we enjoyed a small kiddish at the shul and then went to a nearby restaurant to continue the celebration with Hayden's grandparents, aunts, uncles and cousins.
Professional photos and video will be forthcoming.
In the interim, I invite you to enjoy this very brief but amazingly incredible playlist of some highlights that I captured.
Bar Mitzvah 8.12.2018
Last but certainly not least Hayden's annual support page for the NFXF-- which this year is also his Bar Mitzvah project-- will remain open for a couple more weeks.
Extra special thank you to Grandma Suzi and Pop Z for the beautiful kiddish and to both the Rabbi and my parents, for the heartwarming surprise of Hayden's very own tefillin and embroidered bag.
And the brand new siddur (prayer book) inscribed with dedication to Hayden, from the Rabbi and the Chabad.
I know I already said last but not least but I guess I lied, because I actually want to add an open thank you to the Rabbi. Dan and I could not possibly be more grateful for his patience and understanding with Hayden. I always say there may be a lot of good people in this world, and a lot of really good teachers, but it doesn't mean they're great with Hayden. We are blessed to know him and feel simply impressed how well they worked together, especially within a relatively short amount of time.
Our hearts are full and we look forward to Hayden's next blessing, in whatever capacity that may be. But we know there will be more, when he's ready and not before.