Sunday, 23 December 2012


Normal.  I'm not even sure what that looks like for us anymore but I am attempting to achieve it this weekend.  I love Hope dearly and truly miss her whenever we're apart.  I have felt my sanity slipping away this past week and made the tough decision to take a break.  Today I only spent 3.5 hours with Hope at the hospital.  Tomorrow Shawn will spend some time with her, but she will be with volunteers the rest of the day and I will have a sabbath.  I'm not taking a break from Hope, but from the hospital.  I love spending time with her, but find the environment very difficult at times.  This will allow me to come back on Monday morning with new energy, I hope!

Shawn and I are very blessed.  Tonight was going to be his first night at the hospital in a long time.  Sleep is so important to him and he really struggles after a poor sleep.  He had agreed to stay with Hope tonight and let me stay home with Sadie.  More than one person stepped up and offered to take his place.  So tonight, after putting Sadie to bed and having a friend sit in our home, we went on a date.  Normal.

This morning when I got up to the sound of Sadie playing in her room, I felt relaxed.  I spent the morning hanging out with her, cooked lunch for my family in my own kitchen even.  We spent the afternoon as a family at the hospital and Hope seemed much happier today.  I think she's finally feeling a bit better.

Today was not the best day in regards to our talks with the doctor.  We are thankful that our cardiologist has truly grasped the severity of the clot at the end of Hope's PICC line.  Many times we have been told the line will be pulled before we remind the doctor of the clot.  Today it was brought up once again.  The doctor has contacted neuro surgery and they are trying to figure out how this line can one day be safely pulled.  In the average person, the clot would go through the lungs.  Hope's anatomy is far from average and the clot will go directly to her heart, and potentially follow to her brain.  This is so dangerous and could be extremely serious.  Please pray that the doctors are able to come up with the best possible solution for this clot.

We were also told today that as soon as Hope goes 24 hours without diarrhea, they will rebook the cath.  We could still potentially be there by the 27th, but we need this poop to get a little less watery first!  It leaves our lives very up in the air.  We need the cath done in order to have Hope's next Varices treatment as well.  The Calgary team has made it clear that they will not operate on Hope in Calgary until AFTER she has the cath done in Edmonton.  They need her heart more stable in order to consider putting her under anesthetic here.  I do believe that's a fair decision when you weigh the risks.

Christmas if very stressful for us and I'm truly hoping it is over with quickly.  The expectations that come along with holidays are stressful in the best of times.  Some days I feel as though no one understands where we're at in life.  I only have decorations up because someone else put them up.  I would take them down if it wasn't for Sadie, but I know she loves to see her tree.  We only have Christmas baking, because others dropped it off.  We don't care if we make it to a church service, eat a turkey dinner or have pancakes on Christmas morning.  We want Hope to survive, to get strong enough to come home and we want to be together, all 4 of us.  That's all that matters to us this year and everything else feels so small in comparison.  We may not meet others expectations this year, but I'm truly not sorry.  My obligation is to my children, God has tasked me with being their mother and I'm going to make that my priority.

When life is more normal on a regular basis, I pray I am reminded of this feeling.  When I stress about how perfect dinner will taste for company.  When I worry about what my children are wearing in public or if someone likes me.  I want to remember what it feels like right now.  To know that God is truly the most important thing.  The one that I seek to honour with my life.  I want my focus to be loving others, not impressing them or meeting expectations, many of which we put on ourselves falsely.  I hope that next Christmas I'm able to celebrate the gift of Jesus coming to the earth and not get caught up in getting my baking, shopping, decorating and entertaining in.  Sometimes it takes tragedy to pull us out of all the fuss and make us truly evaluate what's important.

I can honestly say that I am thankful for Hope.  Her life is difficult and that impacts our lives in every way.  Not all of those ways are negatively and perhaps I would never become who God intended for me to be without walking this difficult road.  That's the thing about God refining us, the fire is hot and it burns, but the finished product is always more beautiful.  I pray through the holidays that Hope reminds us all of what is truly important.


  1. Thank you for your honesty and for reminding me that it is only what God thinks about us that matters. You are a real blessing. God has chosen a wonderful mother for Sadie and Hope. Jesus was born so that we could walk in His light and know Him as our Immanuel- God with us. How He must be smiling on His faithful daughter just now, yet storing up all your tears as He is sharing the burden you are carrying.

  2. So beautifully written. That's what I was praying and thanking the Lord for last night, that amidst the hustle and bustle I got to stop and spend 20 minutes with my Saviour because of Hope! How many others are also seeking the Lord on her behalf, sitting in His presence, worshipping, and praying Scripture what a great gift she is to us all! Thank you for allowing us to be part of your journey!

  3. I've been reading your blog for a while are so amazing. Your entire family is. So many bad things have been thrown your way but you always push through. Your strength and courage is truly inspiring...but no one can inspire more than Hope. She is such a blessing, not only to you, but now to anyone who reads what you have written here. God is using her...she is touching so many people with her story. I use her story as a bit of an evening and Hope are teaching me patience, courage, strength, love...and I pray that she continues to touch and teach people. I pray that you can find rest somewhere in this Christmas season...and I thank God for your reminder of what Christmas is supposed to be. Merry Christmas! It may be quite a bit different, but I pray you will have your family around you to celebrate the reason for the season no matter what you are doing or where you end up. God bless you all.

  4. You are such an inspiration to us all. On that first Christmas I am sure Mary was thinking that her situation was less that ideal. She endured an very uncomfortable and long ride to a far away town for a stupid census that the government thought was necessary. They arrived late and had to stay in a dirty drafty stable. I can only imagine she was worried, missing her mother and probably not very happy but at all times putting her trust in God.
    From what I read you have it really figured it out, God and family. That is the most important thing in life. I am happy to hear you are taking a little time to regroup as that will just help you be able to face the next step.
    May God bless you all, the volunteers and friends that gather around you and remember you are surrounded by many more of us you have never met but that God has chosen us to advocate for Hope as well. Praying for healing, strength and courage.

  5. Still praying for you all...your post reminds me of this verse:
    2 Corinthians 12:9
    9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

    Hang in there one day at a time...We are praying..

  6. I read your blog and it brings me back to what it was like for are family for the last two years you write all the fellings we felt so i say to you there is hope you will make it though christmas and the new year you are in my thoughts here in ottawa (grandson hlhs- shones complex nov 01 2010)

  7. You amaze me by your honesty and how you articulate your feelings at a time like this..your "broken road" is indeed leading not only you but those of us and our families who are praying and following Hope and your family. Our Christmas is also touched by your lives and we have come to the same realizations that Christmas is just one day but should be lived like it was everyday..the joy, the gratitude, the love ..should be experienced in the smallest little things we do. I started to realize this a few years back after some other tragedy but this Christmas, my three children are also parents for the first time and HOPE's struggle has touched them to the point that they have all put their own struggles into perspective and started praying after putting God on their back burners.
    I like what you said about the refining fire..indeed we are changed when we walk a 'broken road' especially if we turn to Him and ask Him to help us! Wish I lived closer, I would be holding Hope right now! God bless you all and give Hope and Sadie a kiss from all of us here in Montreal.

  8. I am so glad you are taking a break and that there are some very special people who are helping you do this. Keep taking care of you along the way as if you burn out or have other problems you will not be able to care for your family. God is a good God and he knows where you are and where you are heading. Your time...Hope's time is in His hands. I am also glad you are expressing your feelings because if you didn't and bottled them up someday you would explode...and again you would be of help to know one. Keep on Keeping on,

    Naomi in Ontario Canada.