Peace...with a pinch of paranoia

Things have been pretty boring around here, to tell the truth. But I have come to embrace the mundane. The average. The every day.

In other words, the healthy times.

It has been about 5 days short of 6 months since Cece's last bout with pneumonia, which was the cause of her last hospitalization. Really this is nothing short of a miracle. For a child with sickle cell disease it is just plain expected to be inpatient several times a year. (Isn't there something ironic with regard to the two definitions of "inpatient???" But I digress...) Last year she had frequent flyer status after visiting our friends in Peds 4 times, the last one ending on Christmas Eve. Thank you Lord, for the miracle of the timing on that release!!!

So although I try my hardest to have FAITH and PATIENCE and TRUST and all that good stuff, the reality is that I am always waiting. As another mom of a young child born with sickle cell disease said, "I'm always waiting for the other sickle cell shoe to drop."

Sometime soon I think I will post some FAQ's about SCD, because I sure didn't have a clue what it was all about before our beautiful girl came into our lives. But the reader's digest version is that there are a lot of issues that can come along with it, and no one can really tell you when or how or even IF your child will have to deal with them. It's a waiting game. A hoping game. A praying game.

I've never been a superstitious person, but every time someone asks me how the kids are doing I feel compelled to knock on wood. Ridiculous, I know. But this is life sometimes, for all of us. Taking a breath and hoping for the best. Taking a step and hoping not to fall. Taking a leap and letting faith show us the way.

So let me just say it out loud...and this is tough for this control freak to do...

GOD, YOU ARE IN CONTROL.

And YOU are good.

Tomorrow I attend my first patient advocate group meeting at our local hospital. I was asked to participate in order to represent parents of pediatric patients. I was flattered and surprised, and happily accepting of the invitation. I am hoping that maybe, in some very small way, I can make a difference for Cece's future - and for the future of any other children that will visit there. After all, she'll be spending her share of time in Room 204. She already has. But for now, she's sleeping peacefully in her room full of stuffed animals and waaayyy too many shoes (she has a thing for shoes - really).

Thank you Lord, for the healthy times. Please send some Abby's way.