Sunday, April 14, 2013

First Concert

Today's gift is her first concert.

Tonight my husband and I took the girls to their first concert.  We went to see R5.  Don't know who R5 is, you might know their main band member and not know it.  Ross Lynch, aka, Austin from Disney's show Austin and Ally!

A part of me was nervous going into tonight as it was a night concert- as night time can be a rough time for her.  She works hard...every single day and by the end of the day she is done.  I was worried about it potentially being a late night, the noise level, the crowds and everything associated with a concert.   But I was willing to take the chance to have her experience her first concert.

On our way!

Thanks to my husband's firm, we had incredible tickets. We were in the VIP section, had a table along the balcony which looked right at the stage and had its own entrance.  These tickets were the reason we thought we could try a concert with her!

The stage

The Girls

I love how we captured another mother/daughter  in the background too!

We had no idea there were THREE opening acts for R5...and after each one I kept praying that she would make it to see R5....that she would make it to the end.

She was doing great...laughing, smiling, even dancing in her seat.  She was having a fantastic time!  It was wonderful to see her take part in a "typical" tween experience and to truly enjoy it!  I loved that we were able to share this experience with her!

Right when the first act came out....she started holding on to dad tight!

Taylor Mathews!  He was on America's Got Talent the year Jackie Evancho won!

Sunderland Band

R5...Ross Lynch (front and center)

Loving the show!

One of the opening bands kept coming up to the balcony and I "befriended" him quickly with one of my daughter's purple cards. I talk Rett Syndrome wherever I go!  His band, Sunderland, is from Oregon and they were really good!  They were the act right before R5 came on stage.  I asked him if her thought he could help me out and find a way where we could meet R5 after the show.  He said let me see what I can do and I will be right back.   And right back he was!

McKinley (in black) and Kyle (in white) from Sutherland

While we didn't have a "meet and greet", we were the first ones in line right after the show to meet them and get their autographs!  McKinley was incredibly sweet and I can not thank him enough for helping us get to the front of the line.  His willingness to help, really touched my heart!

And the time was perfect for two reasons!  One, my daughter ran into her two great friends from preschool (she was so happy to see these two girls...they are the most sincere girls!) AND more friends from school! Two, we were starting to see our daughter "teeter" and knew things could go down hill fast.  We were pulling out all the strings and praying she could keep calm until after we met R5.

My daughter, her sister, and her friends from her preschool years (and their siblings) with McKinley! 
(he has a card too)

My daughter and her sister and friends with Taylor Mathews...see her purple card in his hand!

The late night....was my biggest this point it was already 10:00pm - TWO hours past her normal bedtime!

We met R5 and she was great.  She gave them one of her Rett Syndrome Purple Cards from GP2C and they recognized them!!!  Thanks to another Rett family who saw R5 last weekend....they were aware of the card!  Ross Lynch, started to hand it back to us, thinking all the cards were the same, and I said no this is a different face, a different girl living with Rett Syndrome, and one of the other band members sitting next to him said (I think it was Ratliff), "yes, that is a different girl on the card"!  They kept one card and we had them all sign one of her cards for her.

Right when I gave them the card!

All of them talking to her....

Her autographed purple card!

At this point it was a, have them sign something and move along....quickly.  While I would have loved to had time to take pictures of them with my daughter, I think this was better as we were losing her quickly as she was exhausted.

On our walk back to the car we were telling the girls how much fun we had with them and how AWESOME they were!  While my daughter was laughing (Dr. Jekyll) she was also very much on her way to having a behavior (Mr. Hyde).

We were in the car, on the way home and if a behavior was going to happen we were okay for it to happen now...with just us.  And it did happen, full swing.  As soon as we got home she was super upset and it broke my heart.

Here we had an incredible night and now the Rett Monster has to take over and show his ugly head.  This is how Rett affects us sometimes...this is our life with Rett.

The questions I kept asking myself....

.....was it worth this behavior to have her experience her first concert?    I say yes for two reasons.  One, how would I ever have known if I didn't try.  And second, she was fantastic at the concert and truly was enjoying herself as she loves music.

.....will I try another concert?  I don't know.  If concerts were earlier, probably yes.  But the time is the one thing that is hard for her.  Maybe next time we leave after a couple of songs and not push it to the end.  But even then it is still late and she is all about her routine.  So, honestly, right now, I don't know.

But what I do know, is that even though the Rett Monster had to show up last night, he can't take away our incredible memories from her first concert!  Her smiles, her dancing, the sparkle in her one can take away!

Here are two quotes for today....

I'll look back on this and smile because it was life and I decided to live it-  Author Unknown

Life is trying things to see if they work- Ray Bradbury

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