Always on our toes

Recovering Hannah sleeping on Daddy, one of her favorite places to snuggle

Hannah seems to be doing even better today than yesterday.   Even though her movement disorder is still pretty significant when compared to a few weeks ago, her personality is definitely coming back.   Today she was playing with her iPad, reading books with her nurse and I at her little desk, and she actually crawled four or five feet to play with her toys.  She is a lot more engaging today than she was just a few days ago.

Such a huge relief!

Hannah always keeps us on our toes.  There is rarely any relax time around her, at least for me.  I’m always mentally prepared for something to happen unexpectedly… she pulls her trach out or she falls backwards or she throws up.  Something.  When I am away from Hannah in another room, I always am on edge waiting for Daddy to yell, “Honey, get in here.  She pulled her trach out!”   Even now that she has decannulated herself twice with both her nurses to the point of turning blue, I also have that in my head “just in case.”

Maybe that is why I always feel the most comfortable when I am lying or sitting right next to her.  Even if she is just playing on the floor, being right there were I can see her hands or keep tabs on her balance actually makes me relax more.  Weird, I know.

I’ve said it a hundred times already, but you know what makes it all worth it?  Her smile.  That gorgeous, infectious, heart melting smile.

I will do whatever it takes to keep her safe.  So if it means more mental preparation and being a little on the edge all the time instead of total shock and fear when something happens, so be it!  Maybe I’m a freak in that respect, I don’t know how other parents of medically fragile kids do it.   But it works for me.  I always would rather be somewhat prepared than be totally taken off guard.