I am part of a pretty amazing community on Facebook for parents, siblings, teachers, grandparents, anyone who loves someone with 5p- syndrome.
I read the celebrations and pride in parents’ voices as their kids do things doctors told them their children would never do.
I read the prayer requests as children are hospitalized or having procedures done to help them live a better, more comfortable life.
I read it all and I watch my girl run and flip and dance and stomp around in plastic high heels, laughing as her sister tackles her to the ground.
This past weekend, I was reading one such post and Alyssa came up behind me. She read what I was reading and asked why I was reading about it.
I told her that the child I was reading about had the same syndrome that Olivia has.
Alyssa looked over at Olivia, who was reading quietly for once.
I could see the confusion on A’s face. I said, “You know she has 5p- syndrome, right?”
She nodded. I’d told her about O’s syndrome over the years, explaining it as simply as possible in the beginning, getting more specific as they both got older.
Alyssa finally said, “I know she has it what does it mean?”
What does it mean? That was a really good question. As far as Alyssa is concerned, Olivia is a little sister just like every other little sister out there. She pushes buttons, she irritates her big sister, she gets into her things and makes messes. She gets her big sister in trouble by crying out when they’re ‘playing.’
I told her, “For Olivia, it means she needs a little extra help when it comes to a few things. Remember that she didn’t walk right away the way Jaxon did? Remember that she didn’t talk as soon as he did?”
Alyssa nodded, taking it all in.
I continued, “It means she’s a little weaker, that’s because of low muscle tone, which means her muscles don’t have the strength yours do. She can make them stronger, though, by eating right and exercising. It means when she gets a cold it takes her a little longer to kick it than it takes your or me.”
Alyssa was listening intently, glancing over at her sister every so often and then back at the computer screen where a sick child’s picture caught her attention.
“But she’s not sickly, Mom,” Alyssa told me.
“We got lucky with Liv,” I replied. “You’re right, she’s not sickly. She’s remarkably healthy. She’s never needed a feeding tube or surgery of any kind. She does well with therapies and we have great teachers working with her. And…she has you. You’re the best teacher and therapist she’s ever going to have. She thinks you’re the best, most amazing person in the whole world. She wants to be just like you.”
Alyssa beamed. I’ve told her these things before but I don’t know if she’s ever really gotten it before.
For us, 5p- doesn’t really change anything. We think Olivia’s pretty great and we know how lucky we are that she’s so healthy. She’s strong, she’s incredibly smart and she’s getting sassier every single day.
What does it mean? It means we celebrate the milestones a little more, we grasp those miracles and hold them a little tighter. We watch her a little more carefully and beam with pride a little more brightly.