Thanks to my supervisor at work I was able to leave work a little early so we could get a decent parking spot at Sprint Center-and we even scored a handicap one that was only a block away!
And thanks to our friend Jennifer who hooked us up in the snack department!
The bald kid had the time of his life. While waiting for the concert to start, we were right next to a huge screen that played snippets of Taylor Swift talking and videos and every time he heard her voice he looked right up at the screen!
When Florida Georgia Line came out, he was a little unsure, as they were pretty loud and he didn't recognize their music at first. But once "Get your Shine on" and "Cruise" were playing he really perked up.
Ed Sheeran was great, but not recognizable to the bald kid, though he seemed to enjoy the music. And he is one talented musician.
Then it was time.
For those of you who have never seen a Taylor Swift concert, you're missing out. I know I'm biased because one of my most favorite people happens to adore her, but she really does it up right in concert. Besides the singing, cute faces, costume changes, being carried through the crowd, over the crowd, around the crowd and tip-toeing barefoot on a narrow plank, she sat and strummed her guitar and shared some words of wisdom with all the impressionable little girls there.
Yes, wisdom at age 22.
She talked about love and heartbreak. And how it will happen to you one day. And it will hurt and her way of dealing with all those adolescent girl feelings was to write music about it. Or in her words; "that's ok if you break up with me, I will just write a whole album about it!"
And about how she thought the meanness and games and jealousy and nastiness people say about you would go away as you got older. Only to find out that isn't true at all, that some people are just mean, always will be. That you can't change people, and that it's ok, you can only change yourself.
And that everyone is different, and that's what makes us all special and unique. And most importantly that when someone hurts you, to make sure you never do something that would make a person feel the way you did when your feelings were hurt.
As a mother of a young impressionable girl, and a kid who is obviously different, I really appreciate this young lady's words. I've been pretty good with not crying lately, but as she sat and strummed and talked to the crowd I'll admit I borrowed the bald kids burp rag to wipe my tears away. And Ethan sat on my lap and just stared at her and listened so intently to her talking. So few things in Ethan's life bring him such happiness, and to watch him react to her talking and her music was pure joy.
The best part was when she would be directly in front of us onstage. He could see her clearly, and definitely hear her, and he would raise his arms up to her like he does when he wants us to pick him up! I really became an emotional dishrag then!
So, with the most heartfelt thanks to all of you, and especially to Brandie and Jake, you made this little guys world. A month ago, heck, even 2 weeks ago he was in no shape to attend the concert. He couldn't handle the lights and sounds during the fourth of July festivities. the fireworks made him a nervous wreck, his heart race and made him short of breath and cry hysterically. Which was when we knew for sure we were going to get rid of his tickets. Cause if he couldn't go, none of us were going. So it was meant to be that in the last two weeks he's been the happiest, most stable I've seen in months. And for Brandie to tell me she was thrilled she won the tickets just so she could give them back for him to use is a true testament of what awesome, kind, special people we have in our lives. Saying thank you doesn't seem nearly adequate. If, God forbid, Ethan is never able to attend another T Swift concert, know that for this moment in time, he was truly, truly happy.
Now that I've made you all cry, because it was hard for me to even type this without welling up with tears.....I had my 3 month follow up at the cancer center today! And it was all good news! The bad hormone that my cancer was so receptive to and feeding off of has been reduced significantly-from 188 three months ago to 18 today! I have been getting monthly Lupron injections to suppress these hormones and they are clearly working! Now I get to have my shots every three months! But, my Vitamin D level is low, really low again, which is probably why I have been pretty fatigued lately. So other than a new script for the Tamoxifen I get to take for 4 more years, I just have to increase my Vit D daily and get it checked again in a month if I'm not feeling better. I really just thought the fatigue was related to everything else going on and the mental exhaustion all of this stuff with E was doing to me, but nope-it's fixable and I will be stronger than ever in a few weeks!
And more good news-Boston has submitted a formal request to Ethan's Case Manager with BCBS for payment of services, Dr Kaine has written his formal referral AND we got a contact today for a company to provide us with a portable oxygen concentrator on the flight out and stationary oxygen while outpatient-to be paid for by our insurance!! Things are coming together, slowly but surely. Patience is not one of my virtues, so this waiting thing is really, really hard for me.
Today I enrolled Hailey and Parker in High School. OMG-I have a Junior and a Freshman! I can't hardly believe it. I am simply not that old. It was weird going to Walmart and not having to fight the insane crowds for markers and crayons and glitter glue! Though we do have a supply list for the bald kid, he's not going to start school until he's back and better-can't risk an illness this close to surgery. And we all know the first two weeks of school the kids bring some germy-germs home. I may have to set up a decontamination station in the garage for Hailey and Parker to be scrubbed down after school every day before even breathing on the bald kid.
My heart is breaking though, because Parker is playing Freshman Football, and his first two games are September 3rd and 4th. Both Brian and I will be in Boston. And the 4th is E's surgery day. We talked to P about it, and I am so proud of his mature response.
"It's ok Mom. I know you couldn't pick the days you had to be out there. And I want you to go and fix Ethan so when you come home he can actually go to one of my games."
If anyone wants to be a stand-in for Brian and I, and watch some awesome Falcon football, I will get you his schedule and you can join Hailey. I may have to have her Facetime me the whole game!
So unfair what my older kids deal with. And the guilt I feel having to always put them second I will never get over. All I can do is make sure they know we would do the same for them, for any of them. Just means we have to make our time together more quality than quantity.
What doesn't kill you makes you stronger.
Doesn't make it fair though, doesn't make it fair.
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