It's the Journey, not the Moment

We've all heard people say you need to live for the moment and live each day as if it was your last.  I was thinking today about that in light of the news we received yesterday.  I believe you need to live for the journey and live it to the end.  If I lived each single day with Hope though, as if it was her last; I wouldn't let anyone else hold her, wouldn't eat, wouldn't sleep and would record the entire thing.  How long would that even be possible for?  Each day with Hope is a part of our journey with her.  We have no idea how long or short that journey will be, and we need to be able to travel through the entire thing.  As a result, I live each day with Hope as though I'll see her in the morning following.  It's what gives me the strength to close my eyes.  It gives me the courage to lay her down so she can sleep or walk away so I can eat.  I'm only human, God is the only one that can hold her 100% of the time, doesn't eat and doesn't need to sleep.

This weekend is not relaxing and carries a lot of stress.  We constantly feel the weight that Monday is getting closer and Hope will be back in the OR.  Today we had the nurses put Hope and all her gear in a stroller.  We walked around the hospital with her for hours and even stood outside the hospital entrance for a brief moment so she could get some fresh air.  She loves to look around at all the people and colours outside of her hospital room.  It's nice to break away from her room and imagine we're a normal family that stresses about groceries and what to make for dinner.

Hope is finally off oxygen, her little nose will get a break for a couple of days before she's intubated on Monday.  We're so used to the tubes that we often don't realize when they're gone.  It's always a joy to see more of her sweet face.  Her abdomen was measured at 49.5 this morning.  I simply didn't believe she could be getting bigger with all the diuretics and the protein infusions.  I laid her flat on her back and remeasured her myself, she was 47.  This is one of the things that isn't consistent with the constant change of nurses.  I took a sharpie and gave her a new 'tattoo' for future measurements to make sure they are accurate.  I'm hoping tomorrow she will be even smaller.

I'm not sure how I'm going to hand Hope over to the doctors on Monday.  Shawn's going to have to take her into the OR while they put her to sleep.  I think I would shake and make her feel anxious if I held her through that.  We truly appreciate everyone praying, I simply can't pray right now.  I go to talk to God and just begin to cry.  He knows what I mean and is hearing every word in my heart.  Seeing all the people that have asked others to pray is nothing short of amazing.  The thought of people around the world, on their knees for Hope, is simply beautiful.  The thought alone gives me the strength to get through another day in what seems like a nightmare.