Saturday, 29 September 2012

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.


  1. Amy: God knows what to pray: Romans 8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God’s will.
    28 And we know that in all things God works for the good of those who love him,who have been called according to his purpose.
    We continue to pray for you, Shawn, little Hope and Sadie and the rest of the family.

  2. I just wish there was some way that I could take away some of the pain and hurt from you, from Hope, from Shawn, and from Sadie. My heart is aching along with yours. I will keep praying and praying and praying. I am sending my love and hugs your way. We have never met, however, you are my friend from afar, and my sister in Christ. May God grant you the peace you so desperately need, and wisdom that can only come from our Father above.

  3. Dear Amy

    My heart is breaking for you as you walk through this valley and become wise and mature beyond your years. I learned a while ago that even in prayer, I don't have to be profound, I just need to be open and laid bare. I know there are others who are deeper in their prayers, but I've learned that when I am at the end of my rope, just BEING in God's presence and saying "You know all about it. Help us" is all that is needed. He knows. He cares. He's there. Lifting you up in prayer right now.

  4. It sounds simple, and yet, it's the most powerful thing we can do: we will be praying that God will bring you the peace that surpasses understanding.