How time flies by! I clearly remember writing the posts in which I shared with you when we received a surprise diagnosis of Trisomy 21 (Down syndrome) after our son’s birth, and the uncanny feeling I had before he was born. And here we are, a week before his bar mitzva.
Years ago I imagined that when he became bar mitzva it would be a huge celebration, that we would invite every teacher and therapist involved during the years. But it’s not going to be like that at all. First of all, we now live quite a distance from those who provided services in the past, so it’s not realistic for them to come. Secondly, we’ve raised him just like all of our other children, and it’s appropriate for him to have the same kind of bar mitzva they had – family centered and low key. He’s not going to have something radically different just because he has Down syndrome.
He is the first of our sons to become bar mitzva since my father-in-law’s passing two years ago, and has the merit to inherit his grandfather’s tefillin. He began putting them several weeks ago, and within two days was putting them on independently.
Since his school van comes early in the morning, he initially put on tefillin after he got home at around 2 pm. But he prefers to daven in shul in the morning like his siblings, so he’s found his own solution – on many days he’s been waking himself up around 5:45 so he has time to get dressed and go to shul, then davens and puts on tefillin there, getting back by 7 am – in time for his school bus.
It’s beautiful to see him step into the role of a bar mitzva boy; we are seeing so much maturation. He’s been looking forward to his bar mitzva since he was eleven and a half, and has talked about it almost every day. I was concerned that the reality would be a let down for him, but that’s not the case so far.
We had planned that next week he would have a ceremony/party at his school for friends and staff, which includes davening there and reading part of a Torah portion aloud, followed by a meal with his class and staff. But just a couple of days ago that changed, since it will be the Three Weeks when music isn’t allowed. We didn’t realize this would be a significant part of the program and since it’s absence will dramatically change the atmosphere of the party, the party is being rescheduled for September.
For the meantime, to allay his disappointment, he’ll have a regular birthday party in school next week.
He wanted to read his parsha/Torah portion in shul on Shabbos and we had hoped he would, but after he had been learning it for a while, we were told that his speech isn’t clear enough for those listening to easily understand him. Instead, he’ll read the maftir.
This Shabbbos is his actual bar mitzva and this is the maftir he initially prepared, but we couldn’t find a house to rent that would fit all of our family members who will be coming. We did find a place to rent something for next week, so we changed the date to next week and our son has prepared a second maftir reading for that parsha.
The community will be invited for the kiddush/buffet spread in shul on Shabbos morning. We’ll have three Shabbos meals together with all of our family, and ds has reminded me that we need to do a birthday circle for him. I can’t forget that!
At the beginning of this week I went away for two and a half days to a mother’s retreat at a hotel opposite the beach, and the quiet time I had for reflection and renewal was priceless. Since I do all the catering myself, I would have liked to have this week and next to do all the baking and cooking I need to do, but having time for myself was important enough for me to push the preparations into a shorter time frame.
Avivah
Leave a Reply