Baked Jeans

Baked jeans and a bunch of things, that’s what this post is made of.

Back in the olden days when the weather was warmer in March and April we would often take a drive to our family cottage for Good Friday.  (Our church rents so we can’t hold a traditional Good Friday Service.)  It was usually our first view of the cottage after the winter, and we would stop for breakfast on the way up and just have a great day.    So this year we decided to do that again, but thought we would also spend the night  –  for fun.  Ha.   But it wasn’t all fun,  because for some reason although we KNEW there was still snow at the cottage, we didn’t exactly prepare for it.  So the kids played and got soaked playing in the slush without snow-pants and ended up having to spend the rest of the day indoors.  We had packed light since we were only staying for one night which meant the kids had to change into their pj’s and we may have all gotten a little cranky from being stuck inside for the rest of the day.   And then what is a mom supposed to do when faced with a bunch of wet jeans in a cottage with no washer or dryer?  Well she bakes them in a convection oven at 250 degrees for 10-15 minutes.   Who knew baking jeans would be so easy, or so smelly (that’s ditto for the socks, but WAY stinkier).

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Backing up now to three weeks ago – I had the opportunity to go to SickKids and share our Ava story with a group of people taking a palliative care course.  It’s such an honour to be asked to go and Jason and I both feel it’s just a small way that we can give back to the hospital who gave so much to Ava.  It’s always a pleasure to be there and meet with some of the wonderful people that we got to know while we lived in Toronto.  It actually really makes me miss my time in Toronto and I look back with a little bit of longing for those days when Ava was alive and we saw our Toronto people regularly.  But now I’m just happy for any opportunity to see them and I also have to thank my dad who comes with me because we had such a great day together and I love the company and I love not having to drive in Toronto in my not-so-small vehicle.

And now backing up all the way to the end of March (backing up seems to be a common theme here) – we had 3 inches of snow early one morning on a day that warmed up pretty quickly.   Will, Sarah and Sophia headed out the door as soon as they could and built these 7 snowmen… one of each of us.

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snowmen

But since it warmed up so quick, the snowmen starting melting and first we saw daddy topple, then I bit the dust, and noses all fell off and it wasn’t pretty.   That afternoon the girls and I went and ran some errands, and when we came back, Sophia got out of the vehicle and ran into the yard yelling, “Is Ava still alive?”   I laughed out loud.  Oh dear sweet Sophia, I wish, I wish Ava was still alive.  But as for your baby snowman, it may have died.  Life can be harsh. 🙂

And staying on the subject of life being harsh, yesterday at church they mentioned a conference coming up next weekend at Harvest Oakville by Paul Tripp called When Suffering enters your door.   He says that we shouldn’t be surprised by suffering, it’s a universal experience for all humanity… and they showed this clip – which I HIGHLY recommend because it quickly explains how Jason and I were able to have the hope that we had in the face of our suffering.

Which brings me back (one more time) to a quote that I found when Ava was sick which I blogged about back then as well, …

In the mid-16th century Francis Xavier (1506–1552), a Catholic missionary, wrote to Father Perez of Malacca (today part of Indonesia) about the perils of his mission to China. He said,

The danger of all dangers would be to lose trust and
confidence in the mercy of God… To distrust him would
be a far more terrible thing than any physical evil which
all the enemies of God put together could inflict on us, for
without God’s permission neither the devils nor their
human ministers could hinder us in the slightest degree

And a great verse from Romans 8:18

 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

Suffering if something that we all will  experience at one time or another, but praise God that through Christ, it never has to be without hope.

Amen!

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

 

 

 

 

What we’ve been up too…

And here I was, planning to get back to blogging and do it regularly, but as this post is almost two months later, that clearly didn’t happen.  But what did happen was that we had a great summer with our family and friends which ended way to quickly.   And then… well I hinted at this a long time ago, but this fall we made a huge decision for our family going forward,  we started homeschooling!!!!   Yes folks, it’s true, we decided to pull our children out of the public school system and start teaching them at home, it’s kinda exciting.  And that probably explains why I haven’t had much time to breathe, let alone blog.

It’s been about 6 weeks and I can cautiously say it’s going well… although I can pretty much guarantee this won’t be a blog where you come to for homeschooling advice.  Rather, we are likely to be the blog that other homeschoolers visit so that they can feel good about themselves… haha    But we are creating a daily routine for ourselves and things do seem to be getting learned so that’s good.   I’m cutting them some slack right now because I KNOW without a doubt that none of my children would have ever flung a math book across the room at school, but at home that can seem like a good thing to do.   I guess trying to set up structure and routine in a place where you feel the most comfortable isn’t the easiest.  But we are persevering.

And the kids are doing really good, and seem to be enjoy being at home.   They really like the fact that if they hunker down and get their work done, it leaves them more time to do what they want to do.  And I like that we can tailor their education to each of their strength’s and weaknesses…  which also means we have to work around my strengths and weaknesses.  Weaknesses in the plural.  Homeschooling is humbling, it really is.

On a lighter note,  I want to take this moment to brag that our William came in 2nd in his cross country meet last week, way to go William!

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He couldn’t run in the Public School’s Cross Country meet this year, but ran in the Christian school meet instead.   There was still a large crowd and Jason thinks there were over 75 boys in his race, maybe more, so we were really very proud that he did so well.  I’m not sure where he got his speed from, maybe from his dad, but it certainly is fun to watch.

I wish I had been able to be there, but as it happens  I was in Toronto at SickKids that day.   I had been asked by the PACT team if I would come and speak at a seminar they were holding on palliative care, and I was very honoured and so said yes.  My mom came to be our substitute teacher for the day, and my dad came with me to Toronto.  I thought that I might cry too much or take too long, but praise God, it all went well.  There was a question period afterwards and I really enjoyed that, the students of the course asked me questions and one of the Dr’s on the team sat with me and facilitated as well as asked me more questions, and I just thought it was a really neat experience.   Not only was I pleased to give back to SickKids in this way, but I was able to see lots of our 4D staff, and one of our nurses from the CCU, as well as some members of the PACT team I hadn’t seen since last August.  Going back to SickKids is always bitter-sweet – but going there makes me feel close to Ava so it’s all good.  Jason and the kids wished that they could have joined me, so we are hoping to go back again soon.

As far as the other kids and what they are up too… Sarah is doing pretty good with her diabetes and her pump – she actually deserves a whole blog post for an update which I will do next.  And Sophia is just her happy sunny self… although lately it seems that she is fed up with being the youngest child.  She is taking to heart every time she doesn’t get to do something or feels left out – it’s tough being five years old.   Erik is programming his heart out  – which means he is still doing things that befuddle me completely so that’s good I think.   Jason is keeping busy as always and I am so thankful for such a wonderful supportive husband who takes such good care of us all.

I wish I had some recent pictures to show you, but I’ve been terrible and haven’t been taking pictures lately, so I will have to leave you with some that we took during our vacation in August.  These first three are pics of us sending off Chinese lanterns to remember our sweet little Birdy.  Jason found them for us and we loved sending them off… they were beautiful and it felt very fitting…

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And here are the four turkeys all together…

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So that’s what we’ve been up too in a nutshell.   We are so thankful for all of our blessings and God’s mercy towards us… it’s amazing.

Ephesians 3:20  Now to him who is able to do far more abundantly than all that we ask or think,according to the power at work within us,
21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

 

To Honour our Nurses….

These past couple of days I just keeping thinking about all of the nurses and staff at SickKids – and the ones we met a few times at Children’s Hospital in London too.   We are eternally grateful for the care they showed Ava and our family and for the compassionate and brave way they supported our family through her death.

I was trying to find the words to acknowledge all the things their job involves when I stumbled upon this… an article written by a SickKids nurse that was published in the Star.    She was very kind and gave me her permission to reprint it here.

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By Jacqueline Hanley

I’ve had a few moments at work, recently, that really made me think about what it means to be a paediatric nurse. I was reflecting on a particular patient and I wondered, when I got home and my husband asked me, “How was your day?”, how could I possibly ever share with him what it was really like? How could I share the conversation I had that day with a six-year-old, mature beyond her years? Or the feeling I had when she told me she hates her scars? Or how weary I felt at the end of the day, a day that wasn’t even particularly busy?

I wish that when asked how my day was, I knew how to give a truthful answer.

I wish I could really express what a shift is like, and know I would be understood.

If I really answered truthfully, I might start off with how many times I saw a child smile. I might tell you about the tears I wiped. I could tell stories about the kids I made laugh. I could tell you about the kids I made cry.

I might tell you about the parents I consoled, reassured, encouraged.

I might tell you about the family that thanked me, and the family that pushed me away.

I might tell you how many times I grew frustrated. Or how many times I felt annoyed. I might tell you about how many times I thought my headache couldn’t get any worse.

I might tell you how I taught a new nurse and how I learned from an old colleague.

I might tell you about the stickers I stuck, the pages I coloured and the teddy bears I tucked into bed.

I could tell you about the call bells that rang, the IV pumps that beeped, the monitors that alarmed.

I could tell you all about the blood product reactions, the worrisome fluid balances, or the child who was fine and, then, suddenly, wasn’t.

I could tell you how many gloves I put on, basins I emptied and faces I wiped.

I could tell you about the tricks I use to sneak in an assessment on a three-year-old; the games we play so they will take their meds, and how, in order to auscultate a five-year-old’s chest, I have to pretend I’m listening for monsters.

If I were to tell you what my day was like, I might tell you that my hands will always feel sticky from hand sanitizer, and no matter how much I wash, “that smell” won’t seem to go away.

I could tell you how funny it is to hear a two-year-old say “stethoscope,” and how heart-breaking it is to hear a child whisper, “I just want to go home.”

I might tell you that today I heard a child’s first word. Or saw his first steps. Or watched a preemie finish her first whole bottle. I might tell you about the father who fed her, who took this small victory as a sign of hope.

I might tell you how the bravest person I know is an eight-year-old. Or the happiest person I know is a two-year-old with a medical history as old as she is.

I might tell you about a moment of joy, shared with a family, a patient, a colleague.

I might tell you how many times I felt my heart break.

I can tell you about the steps I walked, the hands I held, the songs I sang to put them to sleep.

If I could really talk about how my day was, I might tell you about the decisions I made, the priorities I set. Or about my “nurse’s intuition” that told me when I should start being concerned.

I could tell you about the orders I questioned. The orders I should have questioned. The split-second decision I made. The carefully calculated words I chose.

I could tell you how I fought for my patient. I could tell you how my patient fought me.

I could talk about how I taught a parent to be the nurse to their child that they never wanted to have to be.

I could tell you how that parent taught me about hope.

I could tell you about the moments of panic. The moments of empowered confidence. How smoothly our team functioned. How resourceful we can be.

I’d want to tell you about the breaths we gave, the lives we saved, the lives we couldn’t save.

I might share with you those moments when I just didn’t know what to say. Or the times I realized there was nothing I could say.

I could tell you how often we see a child and family suffering and think that maybe enough is enough. I could tell you about all the times we think that everything will never be enough. I would struggle to tell you how hard it is to say goodbye; I’d have a harder time telling you how sometimes saying goodbye can be a relief.

I might tell you how many times I thought, “This isn’t easy.”

I could tell you about the times I feared that when I decide to have children, that they might not be healthy. I could tell you about how every time I have that thought, I wonder how my husband and I would cope; would we be like the families I meet here every day? How would we make it through?

I could tell you how hard it is to be a paediatric nurse. I could tell you how rewarding it is. I could tell you how I know I probably won’t spend my career at the bedside, but how much I know I’ll miss the bedside when I finally walk away.

I could talk about these things, if I thought I might be understood.

Instead, I’ll say, “It was good,” with a smile; “I’m tired,” with a yawn.

At the end of the day, being a nurse is one of the hardest things I’ve ever chosen to do. It challenges me. It inspires me. It exhausts me. It empowers me. I love it.

It may sound clichéd, but when I’m tired and worn, I try to remember these things. And I try to gather the strength and bravery of that eight-year-old, and the happiness of that two-year-old.

And maybe next time, when someone asks, “How was your day?”, I’ll smile, and yawn, and say, “It was . . . indescribable.”

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It makes me cry every time I read it…. partly because I know that even though it’s not easy caring for children and their families, our nurses did their jobs so well.  No nurse on 4D was ever unkind to us and when I wasn’t able to be with Ava, they were there for her and filled in those gaps.

But it also makes me cry, because they knew and understood that last year at this time enough was really enough.   And because they knew all that Ava had endured, they could truly understand the relief there was at finally being able to let Ava go so that she wouldn’t suffer anymore.

So for everything they did for Ava and our family they will forever be in our hearts and I’ll always have hugs for them whenever I see them.

God bless you our nurses!

 

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!