Weak

I recently told Tom that we should take the girls to Cedar Point this summer. We’re just a couple of hours away from the park and it would a good time for all.

He asked if there was enough at the park to keep Olivia happy all dya. I told him emphatically that, yes, there is a lot for her to do. Heck, she’d be happy to spend one entire day at the water park, just floating and soaking.

I then said off-handedly that we’d need to take the stroller.

He asked why we’d need to do such a thing.

I pointed out that not only is Olivia five (and honestly, I’d take a stroller to Cedar Point for a typical five year old too, because, dude, that’s a big place and walking all day is going to wear out even the strongest of short legs) and she’s weak.

Tom asked me why I’d say something like that. He said that she walks, she runs, she jumps, the climbs stairs up and down without help (unless I’m around and then she asks to be carried), she also skips and hops like a pro.

I acknowledged that yes, she does all those things and she does them all pretty well. But I went on to remind him that she still has low muscle tone.

He snidely asked me, “When was she last tested for that?”

I raised an eyebrow at his tone but answered neutrally, “Never, but low muscle tone doesn’t go away. Yes, she is stronger today than she was a year ago and she can continue to get stronger but she still has some muscle weakness.”

He just shrugged.

This exchange made me wonder…am I perpetuating O’s weakness by taking a stroller to Cedar Point for her and even by carrying her up and down the stairs when requested?

But like I said, I’d take a stroller to an amusement park for a typical five year old so…no?

I’m not sure Tom understands that Olivia is never going to ‘get over’ 5p- syndrome. It is in her chromosomes, it’s part of who she is. She’s always going to have to work a little harder than her peers. She may always get tired more easily than others her age. Yes, she’s amazing and has proven so many doctors wrong with her abilities but…that doesn’t mean she’s ‘healed.’

It’s as if Tom and I are on opposite ends of the spectrum. He’s on the end where O is fine, she’s strong and there’s nothing she can’t do. And I agree with him to a point. I believe there is nothing she can’t do as long as we give her all the help (via therapists, teachers, experiences, etc) to learn to do all the things she wants to do.

I seem to fall on the other side where I know she’s weak; I know there is not getting away from 5p-. I acknowledge it and…embrace it? I don’t think that’s the right word but I do think that Tom feels like I coddle her. I think he believes I encourage her to revel in her weakness.

Obviously we both need to meet in the middle in hopes of helping Olivia reach her fullest potential, to ensure that she gets the help she needs to get stronger and do all the things she wants to do while not ever letting her use 5p- syndrome as a crutch.