Friday, 11 January 2013

True Joy

I find it more difficult to write if I try to pretend I feel something different than I actually feel.  This week has not been easy.  I'm tired, my neck and back are aching constantly and I dream of having a morning that no one will need me and I can sleep until my body feels like waking up.  At the same time, I know that my girls are both worth it.  When Sadie calls out in pain in the middle of the night, or yells so I can help her get out of bed in the morning, I never hesitate.  I want to run to her and be there to lift her up and reposition her so she can sleep.  Some days Hope fusses for most of the day and I start to feel frustrated.  All it takes is for her to grab a handful of my hair and stroke her face with it, or put her fingers on the side of my face and touch my cheek.  It gets me every time and I remember that she is worth it.

Tonight Shawn and I put Sadie to bed and spent the night hanging out with each other.  We sat on the couch and watched one episode after another of one of the shows we like.  We laughed.  I ran upstairs to grab a glass of water and stopped as I passed the mirror and saw my smiling reflection, I'm happy.  I know, it's hard to believe.  The world is stacked against me and each day I carry the weight that every doctor thinks my little girl is going to die.  They may be right.  Those things hurt and I shed my fair share of tears over them all the time.  But the very core of my being, the soul within me that believes God has a plan for my life, for my family, it feels joy.

I would not have chosen this for my family, having a sick child is never easy.  I cannot allow myself to forget that I have so many things in my life that others would have chosen if given a choice.  I have a husband, one that loves me.  I have two children that I love dearly.  I have a roof over my head and a full tummy each night when I go to bed, often too full.  I have friends and family that never seem to tire and continually stand with us through this crazy journey.  More than that, I have a God who gave up his son and allowed him to be tortured and die so that I could be free.  I feel like Hope is tortured on many occasions and the pain I experience while it happens is often too much to bear.  Handing her over and willingly allowing her to die, that I cannot even imagine.  How can I not be thankful?

Amongst my joy, there is very real pain and this week it has been suffocating.  I often find myself in a daze and struggle to remember what I was doing before I return to reality.  I am overwhelmed and my brain simply turns off to protect itself.

This morning I got a call from the cardiologist.  We were both sleeping, the doctor yawned as we spoke, but Hope was not having a good night.  She is spiking high fevers once again and has been put back on antibiotics.  They decided to put her on the strong stuff again and we pray that it works.  They have also thrown in the towel and have admitted that the PICC line has got to come out.  They are now looking for a team of doctors that is willing to take on the challenge of getting a new one in.

The Cardiologists are talking about sending us back to Edmonton at some point on Tuesday.  Hope would have her cath on Wednesday.  We will need to wait and see if the blood cultures they drew from her this morning grow anything.  This infection has been well hidden and is not showing up on the blood cultures previously, so I don't expect them to grow.  As long as they don't, we should be moving forward with the heart cath.  Please join me in praying that this is a short trip to Edmonton and that Hope will be back before next weekend.

At this point it sounds like Hope will have to be put to sleep 3 times before January is over.  She needs the heart cath, the varices treatment and a new PICC line.  Every time we send her back into the OR it takes weeks to get her development back to where it is.  My daughter is 9 months old; she can't roll over, sit up, hold her head securely, make babbling sounds or laugh out loud.  We are already so behind and each day she is denied the opportunity to grow and develop is really hard.  We want to come home and are willing to do what it takes to get our girl home.  Sadie prays everyday that Hope would get better and asks if she's coming home.  Regardless of what Hope's future holds, we want to spend more time with her at home as a family.  Please join us in praying that this dream will soon be a reality.


  1. My heart cries for all of you. I see a strong, faithful family with more of a burden than humans should have to shoulder and I continue to send healing from Ontario. Three horrible events have rocked our world here. Reading your blog helps me remember that belief must be solid. Thank you.

  2. Amy, I have been following your blog and praying for you and your little Hope. May God continue to sustain you when you are weak and want to quit. You are such an inspiration to others. May God give you peace as only He can give.

  3. as always, so appreciate your brutal snd beautiful honesty about this road you walk. perspective is important, and yours is amazing. thank you for the energy you exert to keep us updated... im sure that even if its sometimes cathartic, it's not easy. thank you. We continue to hope and pray for all of you, and will pray specifically for the 3 planned procedures and trip to edmonton

  4. All that you write shows that God is surely with you and as he works in your lives he inspires us all through you. I am so glad that Hope has such a loving family and that she knows that she is loved.

  5. Still praying....Our God reigns and it is amazing to see how He is holding you up. I know God, in His wisdom, is using you for His glory.....praying for all the things you mention from afar.

  6. Your words ring true! "as I passed the mirror and saw my smiling reflection, I'm happy. I know, it's hard to believe. The world is stacked against me and each day I carry the weight that every doctor thinks my little girl is going to die. They may be right. Those things hurt and I shed my fair share of tears over them all the time. But the very core of my being, the soul within me that believes God has a plan for my life, for my family, it feels joy."
    And are evidence that God's word and his Holy Spirit are working in you. How else does someone have joy in the midst of this type of pain? God says, "My grace is sufficient for you, for my power is made perfect in weakness."
    "But blessed is the man who trusts in the Lord, whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit."
    "I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints and his incomparably great power for us who believe. That power is like the working of his mighty strength, which he exerted in christ when he raised him from the dead and seated him at his right hand in the heavenly realms, far above all rule and authority, power and dominion, and every title that can be given, not only in the present age but also in the one to come."
    That power was made evident in your comment above. Your joy is no accident. It is a byproduct of a loving/comforting relationship with the One who made you. It is to him we pray and it is He who pulls the strings.
    I am so encouraged by your heart today!
    Praise God.
    Every day this goes on there will be struggle to trust in God's goodness but keep crying out for the strength only he can give. He loves you!

  7. When I met you last week, I was struck by your strength. I had read your blog and knew you were struggling but I can honestly say that you made it very hard to tell. You brought me a sense of peace on my own journey that I had yet to feel, and I can only hope that in return your family is blessed with answers and your road ahead eases. Please let me know if theres anything I can do, I didn't convey that as well as I would have liked. I was so in awe of your willingness to help me with everything you are dealing with, I forgot to say,likewise, don't hesitate to ask.

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  9. Still reading your blog and still praying! Ephesians 3:20-21