Everything in balance

Today was rough, tough, and downright heavy. I think I should have seen it coming, Sadie had several good days where she's started adjustment and her body had responded positively to medication; and emotionally she's been tending to her self care with art, crafts, movies, and enjoying the surroundings of the medical floor and all it has to offer.

Today was not that. Today was a reminder of why we're here.

This morning started by hopping on the grumpy seat and sliding all the way back down that beautiful hill we'd just climbed. Sadie didn't want to eat, her vitals were trending in a downward fashion, her blood pressure lowering, her arrythmias flaring, and her entire mood was off because of it. When you feel physically lousy its already the pits and then not eating makes her feel even worse- and having to take meds on an empty stomach also sucks- and then still having to participate in sterile dressing changes and cleanings - it was all a bit too much for her. 

As her Momma it breaks my heart to see it, and being the one she feels safest with means she feels safe to let out her hurt and anger and frustration- and it's heavy- She's eight and she's already had to face harder challenges than most adults. The thing that gets me is at the end of the day no matter what kind of day she's had Sadie still asks to pray for the little boy across the hall who's also here for a transplant. Her heart might be physically hurt, but it's so full of love. 

When I first found out Sadie would need a transplant I joined a couple of transplant support groups. One thing that is echoed in them is this: It's a marathon not a sprint, and sometimes progress is as simple as not moving backwards. 

I leaned on that advice today. Today was rough, it was hard, but I have to take solace in the fact that she's not worse than she's ever been before, her heart is just sick, and some days that sickness is going to knock her on her butt and make itself known more than others. 

By the end of the day Sadie did ask for food (thank you God) and managed to eat a little. She's still on the lower end of her stats but I'm praying for a better tomorrow. Moana came on the Disney channel tonight, she perked up a bit during the day when she was looking forward to it and asked to draw Moana on the window. We played the soundtrack and for two glorious songs I got to hear her sing and smile.