December 3, 2011

A Good Day, with an Asterisk

Yesterday, Schuyler had a very good day.

Mostly.

After a semester of hard work, Schuyler's beginning band class held an in-school recital; in her case, the beginner horns and percussion. Schuyler has been excited but anxious about this performance. I'm not sure she's completely accepted that she was really going to be able to be a member of something like a band program. She's been a little hesitant, as if someone was going to take this away from her. Being able to participate completely and meaningfully in an actual performance was exactly the thing to convince her that this is all for real, and hers if she wants it.

So it was a big deal, this performance.

Still, when I walked into the school, I wasn't expecting to see two of our very best friends, Schuyler's godparents, waiting inside. I actually did an old movie-style double-take when I saw them. Their attendance was no small thing; they live about six hours away, after all. Jim and Kim have been huge supporters of Schuyler's all along. Jim is an old friend from high school who is now an exceptionally talented band director; his wife directs the color guard at their school, the girls whom Schuyler still refers to as her "sisters". When they learned that Schuyler had a rough week with at least one seizure and probably more, and knowing how important this first performance was to her, they simply piled into their car and drove to Dallas.

Just like that.

Schuyler loves Jim and Kim without hesitation or limits. When she saw them, she waved and smiled a smile that was pretty much in evidence throughout the performance. She ended up doing very well on the recital, and loved every minute of it.

Don't believe me? See for yourself:



After the performance, we scarfed up some free cookies and spent some time visiting with to Schuyler's band director. She's an overbeliever; we like her very much. Afterwards we killed some time until Julie got off work and then headed out for dinner.

It was then, in the car, that Schuyler began to unravel.

Julie noticed it first. Schuyler was trying to tell her something, but her speech was suddenly very hard to understand, almost like a baby babbling. As we parked the car, I turned and saw Schuyler leaning lethargically against the door, her eyes distant and her mouth open slightly. I said her name a few times, and she snapped back. She was irritable and disoriented for maybe a minute and remained a little quiet and distant at dinner.

She came back to us, though. For the most part.

We were all a little shaken, as this was the closest any of us had really come to actually witnessing one of Schuyler's absence seizures. But we took our cues from Schuyler, who seemed determined to have a fun evening despite her lingering disorientation and fatigue.

Schuyler had a good day, mostly. At its conclusion, she decided that it should be a good day to the very end, monster or no. We're okay with that decision.

28 comments:

Bev Sykes said...

I feel as proud of Schuyler as if I were an aunt watching her performance. I can only imagine how it must have made you feel. Way to go, Schuyler!

allyeis said...

Sucky about the seizure but she (and the whole band) should be so proud of their concert. Schuyler was so fun to watch, loved her little bow after one of the songs. Awesome, Schuyler, awesome!

Patti said...

Oh, indeed she did do well! Schuyler's smile is lovely, but so were her hands--she was getting the rhythms really well, even when they were subdivided. And she watches the conductor. Nice work, Schuyler.

Tracey said...

Congratulations to Schuyler, that sounded like a great concert! And that smile after each song was so, so fantastic.

mooneyequalsmc2.com said...

I agree with Bev, watching this filled me with such joy and pride for Schuyler!!! What amazing friends to drive all of that way to support their girl! There are adults with less challenges that would crumble at being on stage, but not Schuyler! her smile is worth a million bucks!

Abby said...

That concert was amazing! Schuyler and all the kids did an awesome job!

Miz Kizzle said...

Wonderful rendition of one of my Yuletide faves, performed in the stately way it was meant to be played. Bouncy Christmas songs are the worst, especially the one about the child desiring nothing more than his/her front teeth.
A question, not to be snotty but just curious: If you don't believe in God, how do you explain Christmas to Schuyler?

Rob Rummel-Hudson said...

Well, first of all, we're Agnostic, so it's not accurate to say that we don't believe in God just because we're not Christians. As for Christmas, we celebrate it secularly, focusing on celebrating peace and compassion and being better people. I think there are a great many Agnostic families who do the same thing.

Elizabeth said...

Terrific performance, Schuyler! I hope she knows how many people out here in bloggy world are thrilled to see this!

As for the seizures, ugh. My heart goes out to you. There's not much worse than seeing them. I do hope you find something to help stop them and am always here to listen.

Emmers said...

GREAT JOB SCHUYLER!! :)

Chicory Blue said...

Way to go Schuyler! Awesome!

Meg said...

That's great for her to have the band accomplishment! As for the seizures, if it's any consolation I have absence seizures and although they weird out the people around me when they happen, they feel nice to me. They don't hurt and they usually happen when my mind is tired or overwhelmed. They don't affect my overall thinking at all except during the few moments they happen and then it's like your mind goes on pause to relax for a minute or two. Hope that helps.

watchwhathappens said...

Not only an instrumentalist, but a multi-instrumentalist! That's fantastic!

Sabrina said...

That was terrific! I love school band concerts, I really do, and seeing Schuyler's smile throughout made it even cooler. She was so excited about being up there; if only all kids could get that excited about school. She is truly a superstar. Way to go Schuyler! You rock!

Amy Delamaide said...

Had to laugh when the first song was Good King Wenceslas--because of course it was. I'm sure I played this song in first year band, too. It looked like Schuyler had a lot of fun. Here's to many more fun band concerts.

Laura said...

Trying to explain to my daughter why I'm crying. . . . gooooooooooooo, Schuyler.

anne said...

Amazing. So great to see her in action!

DDK23 said...

Just love that video, she is growing into quite the young woman. Very determined too. I couldn't help but cry a bit at seeing how proud she was of herself. It must be wonderful for a parent to see that!
Sucks about the seizures though. But true to her personality she fights to stay herself.

carlajmb said...

beautiful girl - wonderful job(:

Joan said...

I rarely if ever comment, but have to say that this video is sure to be one of the highlights of the Christmas season for me. And I am a total stranger to Schuyler! Please thank her from me for the gift of her enthusiasm, her smile, her music, and her delightful bow. What joy she showed in her performance! What a great band director she must have.

Every now and then something wonderful happens. This was one of those times.

Thanks, Schuyler and thanks to all her aupport team, who must be doing something right, from
-- Joan in PA

Unknown said...

What a fantastic job! The hard work has paid off and you can tell how proud she is. She has great rhythm and focus' well. Thank you so much for sharing this. It really made my day, and I don't even know her.

Kathy W. said...

This was wonderful! She did an amazing job with her part, which seemed really complicated. Tell Schuyler I LOVED watching this.

Here's to many more fantastic performances!

Korinna said...

I just read your book straight through...took me two nights to read it all, haha I was so tired for work today after not getting any sleep but reading that book and then seeing Schuyler beat the odds and all her opposers was totally worth it!!! My son is PDD NOS and this video reminded me of his first recital and made me cry all over again!!! Go Schuyler Gurl!!!!! Im so proud of you!!!! My Mikey is proud of you too dear!!! You Rocked!!!

mooserbeans said...

Oh wow! I can't wait to show this to my daughter. She is 13 and also plays the drums. She will be very impressed:) I am so glad that Schuyler seems to be finding has place in school. Not at all glad about the seizure, though. By the way, I am impressed with your school's band program. We have nothing like this!

tiff said...

THAT MANY HORNS? (forgive me, as a horn player I see far too few coming up in the ranks for my taste).

Also, congrats to her!

Now, to read the rest of the post...

Unknown said...

wonderful to see. I am so proud of her and pleased for her.Yay Schuyler

Loves Pickles said...

OOooooooooO!!! Full of happy :)

shabby chick said...

That was excellent!!! My eyes are leaking.