God at Work

God is always at work, it’s  a fact.  And I know that Jason and I are always so encouraged to hear how God is moving in other’s lives, and so glad that our church, Harvest Bible Chapel will often will take the time to have people share their stories in front of our church.   At the end of November Jason and I had the opportunity to get in front and share our story.  That was an emotional and a pretty big deal for us, but we felt compelled to tell of God’s faithfulness even through Ava’s death, and on the whole I think it went well.   We both broke down towards the end both times (we shared in both services) but it was joy to be able to say that we could still praise God for his faithfulness even through our story didn’t have a happy ending.   When it goes online I will definitely share the link of the video.

Now today I going to share another link, one to a brand new Harvest Newsletter done through our church.

I’m a little biased towards this newsletter because I had the opportunity to submit an article for it.   I’m writing a 3 part series on our Ava story and the first one is called  “Peace Amid Turmoil”   It was a huge honour to be able to contribute, not to mention it was my first time working with a editor.  That was an experience that I first found a little tough (someone is actually critiquing my writing!!!!)  but in the end I found it very insightful and helpful.

Here’s the link!   God at Work Magazine

In other news,  I wish I could say that writing the article has been the reason I haven’t been blogging, but the truth is, well the truth is I just haven’t blogged, shame on me!   But I can fill in some blanks to say that we had a great Christmas.  Here’s a pic that I may have taken in the New Year right before we took down the tree…

 

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Our family really loves Christmas and its great to have a break from school and we enjoyed all our time spent with family and friends over the holidays.  We always make lots of great memories and this year we may have started a few new traditions.   The first was that we went and got our Christmas tree on Ava’s birthday which made the day special for the kids.   And then about a week later we made a trip to Toronto – just to revisit some of the places that hold the most memories of Ava for us.   We went and saw the staff who were so good to us at the Ronald MacDonald house, and saw many of our beloved nurses at SickKids.  It’s kinda funny because I know my kids would move back into the Ronald MacDonald House in a heart-beat and I think that is  a huge testament to the great job they are doing there.    I would love us to make a special visit to Toronto every December to be reminded of Ava and also to remember how good God was to us during that time.

And now it’s January and we keep moving ahead.  Lots of things are happening and we keep praising God for the fact that He is always at work and will always be faithful.

Amen!

 The steadfast love of the Lord never ceases;
    his mercies never come to an end;
they are new every morning;
great is your faithfulness.

Lamentations 3:22-23

 

 

 

 

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Toronto

One of my regrets that I have about the time I had with Ava is that I didn’t write about her in my personal journal.  I just didn’t.  I don’t know why.   Looking back I see that I just did once when I wrote out her birth story – maybe because I did that for all my other children and I didn’t want to exclude her.   But I didn’t write the kind of things that I wished I had written about… things like how it felt to hold her, or touch her soft curly hair, or how I like to gaze at her while she was sleeping.  It makes me so sad that I missed doing that.  I could do it now of course but I want to go back and read about the thoughts I had when she was here and alive…. oh I’m so mad at myself!!!       But somehow through those times even when I couldn’t write personally, God granted me the ability to blog and write publicly.  And I praise God that I have my blog, but it can’t replace my journal and only God knows why I never could or thought to write.

But now that Ava’s gone, I feel the opposite.  All I want to do is write in my personal journal and I can hardly bring myself to blog.   I think a part of that is that maybe grief is more personal and can’t all be shared.   And I know a bigger part is that I’ve now judged my blog to be unworthy… I feel it’s just a glimmer of what it once was and now it’s boring.   Blogging about a journey you are undergoing with a sick child is nothing compared to some occasional thoughts of a busy mom.    And I worry that if I keep on talking about Ava it’s eventually just going to sound like whining… and no one wants to read my whining, not even me. 🙂

So the question is… do I continue to blog and just wait out this non-writing period and hope that inspiration will strike again?   Or do I just can it.  Be done with the blog and  say that it ran its course and it’s over.

Big big question.

While I’m pondering that big question, I will tell you about our trip to Toronto last weekend.  🙂

We had always planned to take the kids back to Toronto so they could go back and visit the Ronald MacDonald House and SicksKids.  And then it just so happened that we were invited to a Remembrance Day hosted by the Sick Kids’s PACT team.  Erik had also been part of a research study last summer at SickKids.  It was a study of children who have siblings who are palliative, and the researcher had called this spring to ask if Erik would complete the study with another interview.   Erik surprisingly agreed to go and do it, so we needed to book a time for that as well.  So then it just made sense to pack it all into one weekend away.

Oh – and also fit in a trip to the CN tower.   We had been given tickets last year when Ava was sick and when we didn’t get a chance to use them before she died, but we knew it would be special to do it on a trip back.    And the kids really enjoyed going to the tower… even though we went in the rain…

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But it managed to clear up a bit when we were up and we could still quite far, and it was fun to find places we recognized and watch the Porter jets take off from Toronto island.

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The kids have been able to do so many fun things in Toronto through our Ava journey that I’m glad that many of their associations with her are of good things.   It’s really cool that living in Toronto was very much a positive experience for them.

And visiting SickKids was really good too.   Erik did a great job at his interview.  Last time he told me he answered a lot of the interviewer’s questions with “I don’t know”, so this time he tried to be more creative and say things like “I’m not sure about that” or “I’ll have to think about that”… he’s so sweet.    And it was nice to poke around SickKids and find some familiar faces to say hello too.  It just feels like home when we are there, and that’s where most of our Ava memories are as well.  Some of them are sad, but some are happy too, so I just go with it.  I know that Jason found it emotional being back, but the kids didn’t have any of those worries and just enjoyed doing some of their favourite things like going to play in Marnie’s lounge and getting timbits from Tim Horton’s.

We also really enjoyed going back to the Ronald MacDonald House.   Jason and the kids spent so much time there that I know that they really miss it – the kids kept saying this winter that they wished they were back there.   The timing last weekend must have been God’s timing because our time in Toronto over-lapped by a few hours with good friends of ours from Sudbury.   They had been in Toronto that week for appointments for their daughter who is in remission from leukemia.   We were able to visit them at the Ronald MacDonald House and have lunch with them and we enjoyed our time together so much.  We were saying how we wish we could recreate the Ronald MacDonald House in some way for regular living, as it’s so special and unique, but in the end nothing really does beat living at home.

And then there was the remembrance Day.  The PACT team who helped and supported us so very much as Ava was dying – hosted this day for families who lost a child in 2012 & 2013.  We were so happy to see some more good friends of ours who also came down from Sudbury… they lost their son in September who had hypo-plastic left heart like Ava…it was so nice to have the opportunity to be together and spend time with them.  And there was food and fun, and volunteers to play with the kids and crafts for them to make, and the parents got to talk about how things were after losing a child.   And then at the end of the afternoon we did a balloon release.  The kids had balloons with messages to Ava.  I loved Wills message… “I hope you are having a good time in heaven Ava.  from Will”

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Kinda breaks your heart, but I think I’m pretty good now at suppressing a lot of triggers that might bring me to tears.  I don’t know if that’s good or bad, but it’s rather helpful in a way so I’m fine with it.

So we left Toronto last Saturday thinking a bit more of our sweet baby Ava, and wishing she was here with us.  But on the other hand comforted by the fact that she is no longer suffering and knowing that we will see her once again someday.  OK – funny story… Jason was putting Sophia to bed a few nights after this and Soph was saying how much she missed Ava and wished that she could go to heaven to see her.   Jason reassured her by saying that our whole family would be going to heaven someday to see her, and Sophia replied, “You’re right dad, but you’ll get there much sooner because you are already 41”  HA!  Out of the mouth of babes.

And once again we realized just how much we have to be thankful for.  For the wonderful care that SickKids gave Ava, for an incredible place to stay in the Ronald MacDonald House.  For people’s generosity in supporting us while Jason wasn’t working and we were away from home.  And for all the relationships we gained and the friends we made.   The friends we’ve made have been such a support.   And I wanted to take this moment to mention Tanya – Aleeda’s mom (the little girl who received a heart).   Tanya and I have grown so close from the time together we spent in Toronto.  And we know without a doubt that God placed us together for a reason.   Tanya has been such a great friend to me, and given me so much encouragement and support that I don’t know how I would have navigated this journey without her.   Actually she started her own blog which isn’t so much about her journey as much as it is her thoughts on life… but she posted a wonderful tribute to the nurses of 4D here… it made me all teary.

OK  – I need to stop rambling so I will finish off with a verse.   I have to say once again that our faith in God has been the anchor for our souls through this time of grieving our precious Ava… but knowing that God holds everything is His hands gives us peace and hope.

Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways!  Romans 11:33

Amen!

Sudbury

Here we are again.  Another week has passed and I am attempting to blog and my plan is to succeed.  🙂

First off, as a family we are doing fairly well all things considered.  We are working on getting a good school routine going with the kids and I’m pleased to report that Sophia seems to have turned a corner this week in regards to wanting to go to school.  Up until now she’s been hesitant about going and has refused to take the bus in the morning. I don’t really mind driving her, but when I drop her off I’ve been having to find one of her teachers to hand her off too and then she would start crying and I would have to peel her off of me and bolt.   The teachers always said she was fine five minutes later, but it still wasn’t a fun routine.    But  yesterday morning when I dropped her off at school, she found a little friend right away and I left her happily playing in the play-yard and she was fine with me leaving.  And she was all smiles when she got off the bus in the afternoon, and this morning she actually rode the bus to school!  Way to go Sophia!

And Sarah is doing well.  She’s loving school this year and on Saturday, she and I went to a ‘Diabetes Family Day’ put on by the hospital.  It was really good and I learned a few things and Sarah  met a little friend who also has diabetes who we plan on keeping in touch with.   So I was really glad we went.

William is also doing well.  I do think that he is still trying to process everything that has happened, and so we are trying hard to give him the extra time he needs with us, and that boy likes to talk.  He also likes to run so we were happy that this year he could join the Cross Country team at school.  He just loves it and its so nice that he has an outlet for all his energy and I can’t wait to see him run in a meet.

Erik has also been busy since he bought a Raspberry Pi online (it’s a computer) and has been busy learning how to program it.   I found a website online where you can learn to code and that’s how he loves to spend his time now… which kinda makes me laugh, but I’m very proud too.  Except I wish he was as interested in his math homework.   Jason and I aren’t sure where we got Erik from, but I’m pretty sure he’s already smarter than me.

So with our family update out-of-the-way I can tell you about our quick trip to Sudbury.   You might ask why we would go up there, and I will tell you but it’s actually a sad story.   It starts with us spending the summer at the Ronald MacDonald House with a family who had a son named Jordan who was 9 years old.  He was also born with hypo-plastic left heart like our Ava,  but he had his three open heart surgeries when he was young and so was living with his half a heart.   When we met them, his family was staying at the house because Jordan was experiencing some health complications due to his heart, and as it turned out, Jordan was also listed for a heart transplant this summer like Ava.    One nice thing was that for most of the summer and even up until the time that we left in August, he was able to live at the Ronald MacDonald House with his family while he waited for a heart.   And we enjoyed getting to know his mom and dad while we were there, and Sophia liked playing with Jordan’s little sister who was the same age as her.

Now I’m a little sketchy on all the details, but I do think Jordan had been admitted to Sick Kids and had spent some time there before a heart did come in for him two weeks ago Tuesday.   Except that Jordan walked into the operating room, and didn’t come back out in good shape at all.   It was hard to hear that the transplant did not go as hoped and a few days after the transplant surgery, Jordan lost his life.    We were so devastated by the news, not only because we had gotten to know Jordan and his family,  but because this new heart was supposed to make things better… not hurt him and take his life.    I guess it was kinda shocking for us in a way, because the whole time we had waited for a new heart with Ava, we had never really thought that an outcome of a transplant would ever be different from something good.  Perhaps that was just naive of us,  but it makes us wonder now what would have happened if Ava had received a heart?   I guess it’s a non-issue, but , but it’s still a little tough.

But remember how I said that our faith in God gives us assurance that things worked out for Ava the way they were supposed to?   I know the same is true for Jordan, but it doesn’t mean there isn’t grief, and I can only imagine how losing a child you’ve had in your life for nine years would just turn your world upside down.

When we heart the news about Jordan,  Jason and I both knew right away that we needed to go to Jordan’s service, and so that’s why on Sunday morning we packed up and headed north.   Far north.  But honestly, it’s not as far as i thought it was….. for some reason I was thinking half way to the Arctic (haha), but as it turns out it’s only 5 1/2 hours from here.   And God was very faithful to us and provided us a safe journey as well as a place to stay in the form of another family we had met at the Ronald MacDonald House who also were from Sudbury.  They have 7 children and share our faith and we were very excited to be able to go and spend some time with them.   And we did have a wonderful time together.  They were very hospitable and all the kids had a blast together and if we could have stayed a week, we would have.   But we could only manage to be away for one night, and so after Jordan’s service on Monday we had dinner with our friends and headed home again.   But not before stopping to see the big Nickel.  You can’t go to Sudbury and NOT see the big Nickel

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And here is a pic of the kids together…

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I love big families.

So that was our Sudbury road-trip.   Please keep Jordan’s family in your prayers as they continue to grieve for their son.   I know we are still grieving the loss of our Ava and it’s hard because every day that goes by is a day that I feel further away from her.  It’s one more day added on to the days I haven’t been able to hug her or hold her and it’s hard to think of going ahead and getting that much further away from her.   But on the other hand I know that everyday is a day that I will get closer to seeing her in heaven.  Praise God for the assurance that I have that when I die I will go and see her again.   I can’t wait. 🙂

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, 1 Peter 1:3 ESV

Amen.

And they’re off…

So today.   Well, this morning when I called the hospital first thing they told me that Ava  was currently sleeping but had woken up previously and had been very irritable and hard to settle.   Because of this they decided to start her on a morphine infusion, to see if a constant steady supply of morphine would better manage her pain, if pain is indeed her problem.    I thought I had better head to the hospital, so after Jason did a quick Sunday devotional with the kids I left to go see Ava.

And Ava seemed settled when I got there, so that was good.  But I hadn’t been there long when I got a call from Jason telling me that a child at the Ronald MacDonald House had come down with chicken-pox.   Now this might not seem like a big deal, but when you living in a big house full of immune suppressed kids, it’s not a good thing.  So in order to control it, the RMH has  cancelled every gathering for at least 5 days…. meaning no summer program for the kids this week, no craft room and no ‘Home for Dinners’.   Oh man!   It was certainly a depressing thought for Jay as it meant he was faced with keeping the kids occupied this week without any help from the RMH, and probably not much help from me seeing Ava hasn’t been feeling well.

Something had to be done, so after a quick phone call, we packed up Jason and the kids and they left after lunch today to join family at a cottage up north for a few days.  It was perfect timing and I’m so glad that Jason and the kids will actually have a fun couple of days, rather than stay here and be bored.

So now there are gone and it’s just me and Ava again for a few days.   The up side to this is that it means that I am able to spend as much time at the hospital as I need too without feeling torn, and I can enjoy a few quiet evenings by myself without feeling guilty. 🙂

And I was glad I was able to stay late at the hospital tonight, because Ava woke up around 6:00 pm and was happy to be off her CPAP and sat in my lap and looked around for quite a while.  I thought she was tired out soon after and tried to put her back to bed but she didn’t want to settle, so our really kind nurse suggested taking Ava for a walk, and Ava loved it!   Now, I think I mentioned that they put Ava on another infusion of a anti-anxiety med the other day, Midazolam, but after looking it up tonight I’m going to request we stop it, because when Ava is awake she seems a little stoned and I don’t like it.   Plus, I think she is just as irritable on it as she was off of it, if not more.     Anyway, after Ava’s walk she was finally happy to go to sleep which I was happy to see.    So it seems that she was feeling better tonight, but the real test will be tomorrow when her big diuretic will have worn off and she just might retain more fluid again. I hope not!

It must be everyone’s prayers, but I feel at peace tonight… even with my family away and my baby not doing that great.    Isn’t God good?   It’s a new week and we’ll just wait and see what God will do.   Again, we appreciate and covet your prayers!

Some pink in her cheeks

I’m happy to say that the blood transfusion yesterday did Ava some good and there is some pink in our baby’s cheeks again!    And I just want to say a huge thank-you to all of you who donate blood.  It’s one of those things that you don’t think about until you need it, but then you realize just how important it is.

So now Ava is pinker, but she wasn’t much happier today.  She seemed uncomfortable, but she does have an IV in her foot right now.   Even though she has a picc line, the picc line is being used for her heart meds (milrinone) the picc only has one lumen (port) so had to get an IV for her blood transfusion yesterday.    Sometimes IV’s are fine and sometimes they just really seem to bother her, so hopefully this IV stays open as she needs it for a test tomorrow and then we can take it out.

And Ava is also off her oxygen!  She’s been slowly weaning herself off of it for the past couple of days and so we turned it off later this afternoon.  It’s nice to get the prongs off her face and having her breath room air again, praise God!  See how much better she looks… definitely not as white.

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And isn’t that dolly beside Ava a riot?   This afternoon our floor’s Child Life worker took Sarah and Sophia off for a play and they had these dolls that she gave to the girls and they got to decorate them and then they played hospital.  Well as I was told later, Sarah’s dolly had a breaking heart… and then the dolly had cancer and got a few needles.   Sophia informed me that her dolly didn’t have a heart, but that was OK because she didn’t need one. 🙂  Oh my girls, it’s so sweet but sad at what comes out in their play.  (The child life worker and I agreed that the cancer thing is probably something Sarah picked up from living here at the Ronald MacDonald House).

When I tucked Sarah into bed tonight she had her doll and she said that the doll was better now but still had to get a needle every day.  I asked her if the doll had diabetes,  but she said the doll doesn’t have diabetes, just something similar.   Oh my Sarah!!!

We also saw Grandma today as she drove in for a quick visit and Jason and I met with the transplant team’s social worker which was very informative, so the day went by really quickly which is always good.

So even though Ava isn’t quite back to her old self, I’m glad that she is looking better, and hopefully tomorrow will see even more improvement.

We’ll keep you posted!