Written on June 12, 2025:
Today was Sarenas end of year celebration and siddur party.
A day I didn’t know if we would get to.
A day I’ve cried just thinking about.
This morning Sarena woke up and twirled her way out of bed so excited for her performance! She knew every line to every song and every move to every dance!
We sent her off to school to get ready and told her we would meet her there.
When we walked into the auditorium Sarena was absolutely glowing. I don’t just mean she had sparkles on her cheeks (which she did), but her eyes were just shining so bright with excitement she could barely contain herself. Seeing her so happy was a high I can’t explain.
As the kids were getting ready to get on stage and we got settled into our seats Sarena walked over for a last hug before the performance started. As she came closer I saw the excitement in her eyes turn into the first sign that a seizure was coming. It was a subtle change, one most people wouldnt notice, but something I couldn’t miss. What started as minor eye movement quickly turned into a full blown seizure. We carefully laid her down and gave her emergency medicine. Thankfully the seizure stopped relatively quickly and she fell right asleep.
After checking that Sarena was ok, the incredible teachers began the performance with the rest of the kids…and Sarena slept right through it.
To say I was devastated is a profound understatement…
You see, I try so hard not to compare Sarena to other kids. I really truly believe all that matters is how she is doing relative to herself. It genuinely does not matter what her peers are up to…yet every once in a while I’ll get a stab of pain watching other kids her age pass a milestone she may not have reached yet.
There was something that hit me so hard this year, seeing friends and family post pictues and videos of their first graders receiving their first siddur (prayer book) when Sarena did not.
It comes as no surprise that I was extremely emotional when Sarenas teachers told me they would be incorporating giving out siddurim at the end of year show. When the time came, they invited up the father’s to hold a tallit for the children to stand under while the song hamalach hagoel echoed through the room, and gave out the siddurim one by one to each child…except Sarena. At this point I wasn’t just tearing up a little, I was full on ugly crying. I just could NOT BELIEVE Sarena was missing it.
By the time the show was coming to a close, I was emotionally exhausted and ready to go home. But Sarena had other plans. As her friends were taking their final bows she began to stir and finally woke up.
She didn’t know what she missed. And rather than tell her, the incredible, heart-filled staff at her school חמ”ד איתן did the unthinkable:
They redid the entire performance.
Songs. Dances. Siddur ceremony.
This time, Sarena was at the center.
Sarena is the brightest sparkle in the room — always has been. And today, that light shone even brighter, fueled by her own unstoppable spirit and reflected back by the incredible people who lift her up and celebrate her exactly as she is.
She got her moment. She got her siddur. And we got to witness something truly holy: the fierce resilience of a child who refuses to let anything dim her shine.
And this time, the tears streaming down my face weren’t from heartbreak —
They were tears of pride.
Of joy.
Of overwhelming gratitude.
Because today, Sarena didn’t just receive a siddur.
She received a reminder — and so did I —
That even when our story dances to its own beat,
it can still steal the show.
Tali's Midnight Musings 