It's ok that it's not ok

What do you do when you find out the miracle drug you were banking on didn't work?  You say a prayer, shed tears, and go do something fun.

We picked up Siri and Jane from Grandma's and went home for some quiet time. Ruby took a nap, the girls had some computer time, I laid around like a blob and around 5 it was time to get out. We've never gone bowling as a family. I didn't realize how fun it would be!  Loved it, and the girls loved it more. I got a turkey, but Mark still beat me. I have memories of going to Olympus Hills to bowl, and it being kind of dark and gross. We went to All Star lanes on State and 106 and it felt surprisingly light and nice. Still super greasy and a need to wash hands after the game, but less gross than my memories :)

We got dinner at Pei Wei then hike to the Rocky Mouth waterfall above wasatch blvd. It was what I needed. To get out and up. We had a visit from Mark's brother and he gave us two beautiful plants (I love house plants). Good to chat in the back yard and be with him. He's very uplifting.

We are trying to think about what we do next.  There is drug that is on trial right now that we could try, but its not in Utah yet. Dr Holly is going to try to get it approved through insurance, or push to get the study here (its in the works, just not set up yet). Until then, I feel like we need to understand that our time is short. How do we want to spend it with Ruby?  What memories do we want Siri and Jane to make with her?  Oh that is just about the worst to think about.  It's all the worst, so I'm thinking hour by hour, maybe day by day.

Today as we drove around, when we'd come to stop lights there would be an exhaust smell in the car.  We just fixed a catalytic converter and a few other things, but maybe another needs repair. I only say this because I want to get a different car, and I'm afraid of being judged by people.  I don't want people thinking we're wasting money on unnecessary things.

The news today makes me more excited for Saturday. To be supported and lifted and see happy familiar faces at the Rally.  P.S. register your kid for the bike parade if you haven't yet, they'll get a sweet backpack worth more than the entry fee :)
I emailed Ruby's Make a Wish volunteer and let her know that trip probably needs to be sooner than later. We had hoped to go to Disney World, etc in Sept/Oct.  The resort there for Wish kids, called Give Kids the World, is booked through July, so Mark and I need to think about if we still want to go to Florida or what else may be an option.  We do know we are still planning to go to California with my family the end of June. Looking forward to beach days.

I want to remember how giddy happy Ruby was to be swimming yesterday in her blue suit. She'd lay her head back as I'd hold her arms and swirl her in the water. I want to remember her little voice belting out songs in the car or her bedroom "Let it Go" "Fight Song" "Bombs Away". I want to remember her little hands on my cheeks, talking to me as I put her to bed.

Thank you for the messages of love today.  Thank you for understanding I don't feel like talking. If you have been in the situation where you knew your child could pass away soon, or if you had a sibling pass away, I want to hear what memories you have, what you loved that you did, or wish you would have done.