I do not take these days for granted.
Days when my baby can be a part of our family.
Days when we are not limited by activities that involve an air conditioned environment and hours calculated on IV fluids.
Days when all four of my beautiful K’s can participate in activities together.
Days when we can just look and {pretend to} be Normal.
I love these days.
They are few and far between – be it because of the heat and humidity, because of our schedules dictating that we are not all together as often as we’d like, because sometimes we are just too worn out. So when they DO happen, I cherish them. I cherish them in ways that many people might not.
I cherish the fact that Kaylen has learned how to perch herself on Kendall’s wheelchair, not being bothered at all by the fact that her sister is in a wheelchair. I cherish the interactions that take place between the four of them – how the older two understand that times out with Kendall don’t happen very often, and they are so excited to show her things and tell her about things and watch her light up with excitement. My eyes well up with tears when I see them interacting like this, when I see my baby who faces so many challenges, and the sisters who have to carry so much on their shoulders – all just being regular kids.
Seeing Kendall on that ride yesterday was a weird sort of milestone. I know most people probably don’t bust out the camera for “your first ride on a teetery carny ride”. But for me, it was more about one of the first times she was able to just BE a regular kid. We juggled her fluids and her feeds, took the calculated gamble that she’d be ok from an autonomic standpoint without the oxygen – and she just went. Tube free. Wire free. And if it wasn’t for the chair – she’d probably have been stare free. But we didn’t mind the stares. It wasn’t THAT much to deal with anyways. People who WERE staring were probably staring more at Kaylen riding on the handle than anything else!
but whatevs. we were just us. it was a really good feeling.
i can’t quite put into words how awesome it was to just BE yesterday. Be out, be together, be enjoying life.
So that was our Labor Day. (or Memorial Day, as our “happy memorial day breakfast in bed” from the girls declared…)
Hoping for lots more “normal” days. Loving our boringness right now!
thanks for stopping by.
terra.
Missing Kendall alot cause I haven’t seen her like the other girls. Glad you all got out and had a good Labor day. Love you all!