Okay, so I wanted to post more about the conference we attended the week before last but Olivia got sick and everything was thrown into chaos and yes, here we are.
What was the girls’ favorite part of the convention? Swimming in the hotel pool.
We went to the Indianapolis Zoo and it was lovely but it was soooooo hot that day that all Olivia could do was complain. “Why are we here when we could be at the hotel swimming?” she wanted to know.
Since this was our first conference, Alyssa chose to stick with us. There were several sibling mixers/outings but at twelve, Alyssa is not one to go to something like that one her own. If we’d brought one of her friends? Maybe, but not alone. I get that. I was very similar when I was her age and look at me now.
Olivia wasn’t sure what to think of the other kids in attendance. There were a lot of huggers and Olivia is not much of a hugger. She’ll stand there and take a hug, but she isn’t likely to hug back. She is one of the few shy kids with 5p- syndrome. I realize that is a huge generalization but…well, considering most of the kids/adults we met at the conference, it panned out.
It helped a lot going into this conference knowing that 5p- is a spectrum disorder. There are so many levels of the spectrum. There is someone like James, the keynote speaker, a man who wasn’t diagnosed with 5p- until he was eleven years old. He’s 43 now and works, drives, runs marathons, volunteers at the Special Olympics. He’s awesome.
But you know what? The others in attendance were awesome too, all in their own way. There were the kids in strollers/wheelchairs who brightened the room when they entered because their smile was so bright. There were the kids who giggled when they met new people.
Not every person with 5p- syndrome is going to go on to be a James. And that’s okay because every single person at the conference is loved dearly and that’s what really matters.
Olivia is adored by her family. Taleigha is adored by her family. Helena is loved by her mom and dad and big brothers. Matthew’s family loves him more than words can say. Amy’s parents are so proud of her and it shows when they talk about her. Katie’s mom can’t say enough wonderful things about her daughter.
So many of us attended that conference not just to learn more about the syndrome that affects our kids, we also attended because we’re just so damned proud of our kids. We want to show them off in a setting where they’re (and we’re) not judged, where their accomplishments shine for what they are, amazing achievements reached through love, perseverance, strength of character.
No one thought anything of the fact that Olivia carried around a small (think Christmas tree ornament sized, since, uh, that's actually what the shoe was originally supposed to be) gold show around all weekend. She needs some kind of comfort item to carry around and it can't be a stuffed animal because, duh, those things are gross, at least as far as Olivia is concerned. One mom commented that O had her shoe and the mom's daughter had a small (smaller than a Barbie) doll clutched tightly in her hand. In fact, rather than think the shoe was weird, more than one other child very much wanted to abscond with Olivia's beloved shoe. Their parents were awesome as distracting the kids from the shoe while Olivia tucked it into my purse for temporary safe-keeping.
No one batted an eye that I sat at breakfast, lunch and dinner and fed my eight year old. They were happy to see that very same eight year old was able to tell me, with words, when she was done eating. They were thrilled that my eight year old could tell me, again with words, that she had to us the bathroom. Everyone celebrated every single milestone, every achievement, every step, every word and every sign like it was the achievement of the year. Because each one is. Our kids overcome so, so much just to be here, to breathe, to eat, to wake up every single day and we celebrate them because they leave us in awe.
One grandma said, “I believe in miracles.”
I replied, “I get to live with one every single day.”
She wiped away a tear in agreement.