Clouds, May 2010

Clouds, May 2010

Friday, March 15, 2013

...The Continued.

After work on Wednesday when I was just about home, I stopped at our mailbox at the bottom of the road. I have been waiting for the April issue of Parents magazine, just in case Hayden's picture really was in there. 

I was apparently one of many who shared their own story in response to their February issue, in which they featured a 3 year old girl on the cover who has spina bifida. Among approximately two dozen other children, we had the pleasure of seeing Hayden's picture in their online slide show but also learned he would be in the magazine as well. (I just wasn't sure if this was definite, considering how many responses they received.)

Here is the link to the online slide show, by the way:

Hayden in the April issue of Parents Magazine

As luck would happen to have it the issue had arrived. And further lucky, it was packaged inside of a protective plastic cover because it had a renewal slip. I anxiously drove up the hill to our driveway so I could stop, park, & tear it open. I sat idle & skimmed the cover but didn't see anything hinting to the story. I flipped through to page 5, glanced through both pages of the Contents & same thing... no mention of the story. I kept going anyway, & finally some time past an Editor's letter, a bunch of ads, & some other stuff... there it was on the page marked 18. Among a Parents-to-Parents section, with a thumbnail of that famous February issue in the corner, there were snapshots of three other children including Hayden.

This was fantastic timing... I mean this was fantastic regardless, but particularly on this day I welcomed the beautiful sight of my child in-print in an actual magazine even more stupendously than on a different day. This was the night of the 1st & 2nd Grade Spring Concert at school, & there was no telling whether or not he would make it there. So in my hands I had something incredible & every aspect of this made me smile... his smile, & the extra fragile x awareness to all those who would see it... both successfully distracting me from the possibility of the Concert.

Anyway, if you've been following my blog & my social media posting, you know the deal surrounding this Concert... & while you know why the rehearsal flop on Monday was simultaneously successful... you also know why the night of the Concert could (or could not) prove to be a very big deal.


So, it was now that Wednesday evening. Although we were still beaming over the magazine fame, after dinner it was time to ask H if he wanted to stop at the school to see the kids sing. We were careful again not to phrase this as an expectation. We said we would just pop in to say hi to his teacher & his aide because they would be there, too. He verbalized that he wanted to stay home.

I don't recall precisely what we said after that, but it was something similar to how we presented the scenario in the first place. We were definitely down-playing the importance of it. I was sure to reiterate that we would be right back... we were only stopping at the school & then coming home.

Then, as casually as we could, we said let's just change you out of your sweater & put on a clean shirt. I grabbed a button down so he must've known I was up to something, & sure enough he kept saying he looked silly. The truth is when there is an occasion to be dressed nice, he typically loves that... but again, we kept telling him we were just stopping at the school to hear the kids sing. So he was probably trying to figure out why he was wearing a button down shirt... which we of course pointed out that he looked very handsome in.

Somehow I got his nicer shoes on him as well-- again, totally out of routine-- & next thing I know he was skipping to the car. He was watching his iPad & just going with the flow.

I commented to Dan how thankful I was for Daylight Savings because it was still light out, & therefore I am certain Hayden would be less focused on the fact that it was getting late. At that time he should have been taking his bath soon & then going to bed, because that would be the typical routine beginning around 7 or 7:30PM.

Instead, around 6:30, the three of us were on our way to the school. Again, everything at this point was so far so good. However when we arrived at the school Hayden didn't want to get out of the truck. Luckily-- I swear, I really don't know how any of this was happening-- he did get out & next thing I know we were inside of the school building.

We approached the regular-ed first grade classroom & the children were beautifully dressed, complimenting one another on their fancy clothes, & sort of moving about in a happy, carefree, & also anxious matter. A little boy who always tends to go out of his way to say hello to Hayden walked up to him, & did just that. That simple exchange of, "Hi Hayden!" & "Hi Ryan!" was quite substantial to all of us. It was a subtle cue to Hayden that he was in the right place & he should be happy to be there.

I was particularly thankful for this warm welcome because his special ed teacher had not yet arrived so her classroom, just next door, was still dark. His aide was running a few minutes late as well. But just as we thought we might lose Hayden to impatience, a classmate from the special ed room arrived. He is somewhat protective over A because she is in a wheelchair & he is inherently empathetic. So this was another person that he would no doubt be glad to see & we needed as many distractions as we could get... distractions from the fact that there would be a significant wait-time until the concert began.

The second graders would open the performance, & then about 20 minutes later the first grade classes would sing, & lastly the Concert would finish with both grades together.

There was still fifteen minutes to go until the second graders would open the Concert.

The children in the regular-ed first grade classroom were now seated & coloring to pass the time. Finally his other teacher & his aide both arrived & helped us distract him. They prompted Hayden to show us the various shamrock projects around the classroom, so we oohed & aahed at the little green buds in the flower pot, & praised his shamrock craft displayed in the window.

When we had finally waited long enough that we thought the first graders would be on their way to the stage, we left the quiet classroom & headed towards the gym. When we came around the corner, we were stopped short by the long line of first graders waiting single-file in the hallway. I was sure we would lose Hayden to his anxiety at this point.

But I was wrong. And so very happy to be wrong. Instead of losing his patience, Hayden went over to the pay phone & began shushing everyone because he was on a call. The teachers were trying to keep the kids quiet anyway so I suppose you could say he was only helping.

At least 5 minutes later, I think more, the second graders finally began exiting the all-purpose room. As the first graders approached the entrance where they would go to the left instead to head down the side hall, Dan & I had an opportunity to separate ourselves from him & sneak into the gym. Well, he made it up to the risers but he resumed his post from the rehearsal two days prior... so he was not standing with the other kids. He was sitting on the lowest step, off to the side, quiet, & watching.

With each song that passed, he still would not stand up. He was just so, so close at this point... we had come so far from Monday morning... I only hoped & wished that Hayden would realize he can do this. But he remained seated off to the side.

Soon it was time for the second graders to join them on stage, & without giving Hayden much of an opportunity to resist, his Aide told him he had to stand up & make room for the other kids. She let go of his hand & walked off. I instinctively wanted to lunge forward & save him, but decided to quickly pull my camera out instead. I had made my way to the very front of the room by this point, & one of his teacher's gave up her first row seat for me.

Next thing I know they helped A towards the stage & Hayden immediately put his arm on the back of her chair. And there he was. Standing. He nervously fidgeted with a button, but he was up there. Amongst both the first & second graders. At the Concert.

I started to cry.

I fumbled with my camera, tried to hold my hands steady, & pressed the power button. And then, my heart completely sunk... because the image that was on the back told me the battery was dead.

I glanced back at Dan, who was amongst the others in the standing-room-only section, & motioned my hand under my chin to communicate it was dead. I held the camera near my face & his expression matched my own. 

With quivering hands I took my phone out of my pocket & captured whatever I could. It has a delay... the lighting is never quite right.. the resolution questionable... etc... etc... but I was desperate. 

It worked.

And here he is, clapping to his pal A... to encourage her participation, too :-)


Every parent in the universe should be so lucky to have a kid like mine. I can't even begin to describe how I feel about his courage, as well as his kindness to others... my pride truly is immeasurable.


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