true colors

This afternoon I danced to this song in the hallway and kitchen with Annie.
One day I'll take dance lessons and make it more graceful :) For today I hang on to that moment of love and sunshine with my little baby.

I've felt like she's been doing better lately. Her color is good, more smiling. I think she likes it here on earth :)  But then I get a call tonight from the pediatrician "maybe we should put her back on oxygen 24/7 instead of just at night..."  And then my mind gets all worried. Deep breaths, trust myself. I'm the mom, I know her better than anyone. Before he had called me though I made an appt with a pulmonologist, just to get an experts opinion and advice. I also scheduled a swallow study, to be sure she's not aspirating or anything.  I'm hoping to knock out both those appointments Thursday morning (fingers cross the first one starts on time so I can make it to the second).

I'll also be up there tomorrow with the lovely miss Ruby. Who is crazy awesome by the way. She can't wait to go.  WE ARE BEYOND BLESSED. Who gets to have a kid go through all she has, then get diagnosed with cancer, and be excited to go 'my hospital' as she calls it? It may not always be like this, but for now I am SO very thankful that this is not hard for her.  For me, as I set the alarm on my phone for 'port cream' tomorrow morning (the cream we put on the spot they access her port so she can't feel the poke of the needle) I got kinda worn out. Can we be done with this yet?  No, not yet. Keep on keeping on. Enjoy the journey. Yes, we'll do that. Thank you God for letting Ruby still be with us. And now the tears come as I type this. I love her and I love my family as a whole, each person in it, what we are together.

Open your heart and love those around you. Each of us only has so much time on this earth. I write this to remember to take my own advice :)

Happy Valentines.

Ali