Can’t wait to show you…

Ava’s gravestone!    Today we are celebrating Ava Day – our sweet little Birdy’s birthday;  she would have been 2 years old today!  It’s funny when I think about just how different life would be right now if Ava had been born healthy  – or if she had managed to get a heart and was doing well.   How different and marvelous it would be to have a little 2-year-old running around right now!

But that is not our story and we can be thankful that she is where she is.   We are glad we have this day to remember her, for her sweet smiles in spite of the pain and for how much we loved her and treasured every moment we had with her.

And here is her stone which we are so pleased with, it turned out exactly as I hoped…


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And here are the kids with it…

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You can’t really see it in the picture,  but the kids hand prints are in the foundation of Ava’s stone.   It was Jason’s idea and I love it.  I love it because the kid’s hand prints are on Ava’s coffin that Jason made and we want them to feel a part of this whole thing as much as possible.  You can see them clearly here before the stone was installed…

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And here they are showing off their hand-prints…

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Another thing that is a little tough to see if the photos is the verse on the bottom of Ava’s stone.  It’s her verse, Psalm 73:26…

 My flesh and my heart may fail,
    but God is the strength of my heart and my portion forever.

All I can say to than is AMEN.

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We can’t wait to see you again Ava!

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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!

 

Homesick

Wow, it’s me… I’m back.   It’s been a long while,  almost two months, but I think I”m ready to start again.    I do want to thank everyone who sent me a kind word about continuing to blog back in the spring.   Back when I wasn’t sure I was going to continue, it was encouraging to know that there were those of you who still enjoyed reading what I had to say, even when I felt that nothing in our lives seemed worthy of blogging about.

Lately I’ve been composing blog posts in my head so I knew that it was time to start writing again, for better or for worse. 🙂

Here’s a quick catch-up on what we’ve been up to… let’s see,

End of June and the last day of school.   I love this pic… Sophia is crying because she was going to miss her teachers and Will is just happy…

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June 28 Erik had a birthday and turned 11 on us.  Here he is all excited about power packs that he received that he wanted to use to power his…

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Raspberry Pi.  It’s Erik’s computer that occupies him for hours and hours.  He ordered more parts for it with his birthday money and was thrilled, as we all were of course. 🙂

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He’s such a neat kid even if he is a computer nerd.  I’m now come to grips with the fact my eleven year old son is smarter that me.  But it’s actually turning out to be quite handy, so I don’t mind.

OK – so moving on.  Summer vacation… we’ve spent lots of lazy mornings at the cottage…

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See how Sophia smiled so sweetly for me and Sarah’s like “Whatever mom”?

And the boys spent lots of nights fishing with Jay &  grandpa at the cottage – and actually catching fish this year… woohoo!!!

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I’ve kept the kids busy this summer working as my ‘minions’… here they are painting a new desk for Erik’s room…

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They did a pretty good job actually.  And we’re even raising a few monarchs again this year, courtesy of our butterfly garden we planted years ago.

This beauty emerged just yesterday…

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This in on top of swimming, riding bikes and playing with friends.  There is never a dull moment.

And then last week we celebrated my birthday.  Sophia asked me if I was turning 24 or 93… I only wish and hahahahaha.   But it was strange, for most of the day I just felt homesick…- homesick for Toronto – where we were living last year.

I spent the day missing the nurses & other friends at Sick Kids that made me smile and laugh as well as listened to me when I needed to talk.   I missed the time I had just to sit and pray and drink coffee.  I missed the Ronald MacDonald House and walking through the hot concrete jungle that is Toronto in the summer.  And I missed my precious baby Ava… and I wished I knew then that I only had a few more weeks here with her on this earth.  And the strange thing about my homesickness is that things weren’t all rosy last year at this time.  Ava was definitely struggling and the chickenpox scandal had gripped the Ronald MacDonald House (someone’s child broke out in chicken pox and they locked down the house for weeks and weeks, so no programs for the kids or dinners) so Jason and the kids were spending a lot of  time away from Toronto and I was alone with our sick baby.    And  it was all very tough.  But like I said, this week I missed it all.. the good and the bad because it meant Ava.  We all miss her so very much.

But Jason and I also still know that it’s still all good and Ava is exactly where she should be.  We are honored that we had the privilege of being her parents for as long we did and in two weeks when we mark the day that she died – August 15th – we know it will be tough, very tough.   But once again we can just marvel at God’s amazing grace and how He was so faithful and brought us through our Ava journey with our hearts broken, but in other ways, still fully intact, resting in His peace and love.

As I was writing this I was thinking about how life really is so fleeting… and this verse came to mind….

Psalm 103: 15 – 18

As for man, his days are like grass;
    he flourishes like a flower of the field;
16 for the wind passes over it, and it is gone,
    and its place knows it no more.
17 But the steadfast love of the Lord is from everlasting to everlasting on those who fear him,
    and his righteousness to children’s children,
18 to those who keep his covenant
    and remember to do his commandments.

Ava was our sweet little Birdy, who came and flew away so quickly – but I am so grateful to God for the gift that she was for as long as we had her.

Thank you Lord, and give her a kiss from me.

Amen.

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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!

Spring Clean Up

Two Saturday morning’s ago we loaded up our crew bright and early and headed over to Ava’s cemetery for their annual spring clean-up.   Families typically don’t come along and help with the clean-up, but we had asked last year for them to include us and we are so glad they did.  We feel a little kinship with this sweet country graveyard our baby is buried in – and working there felt like we were doing something for Ava, and as there isn’t anything we can actually do for her now, it felt good.   🙂

As we headed out there it was hard to not get teary.  I hadn’t been to Ava’s grave since her birthday in December… the snow and the cold kept me away,  but I do like going even though it’s not always happy.  The first thing I did when I got there was head over to Ava’s grave and had my little cry.   But after the initial sadness passed,   I could just enjoy the day, helping with Jay and the kids and enjoying being outside.

We raked and raked some more, and picked up sticks and tidied up the place with the rest of the board members and some volunteers and it looked ready for spring by the time everyone had finished.   There was even a group of students from a local high-school there helping and that touched my heart.  One of their high school coaches is the grounds-keeper there and he asked them to come and they came, pretty cool.

Here are my boys working hard.  Believe it or not the girls had already abandoned their rakes by this time and were playing….

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I can’t tell you how good it is for my soul to have Ava’s final resting place in such a beautiful peaceful spot (It will be more beautiful in the coming months… honest).  Perhaps because it is such a contrast to most of her life that was spent in the hospital in the big city.   Most of her life couldn’t really be described as peaceful or beautiful, for her or for us.   So even though it’s just her body and not her soul in this little country cemetery, it makes my heart very happy.

And we still miss her so much!    It till hits us hard sometimes when we think of how she came into our lives and then went so quickly.   But even through the grief,  we can still say that we are convinced that God’s plans are for our best.   Jason and I both never want to go back to being the people that we were before Ava – before we knew just how deeply we could trust God through the very hard times, and how faithful God is even when you feel like your world is falling apart.

And Easter was a great reminder of God’s love and sacrifice for us.  In our Easter service we sang “In Christ Alone.  Once again we sang those words that I had up on Ava’s wall at the hospital for so long…

No guilt in life, no fear in death,
This is the power of Christ in me:
From life’s first cry to final breath
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I”ll stand.

So of course I cried and cried and cried, which is just fine as there is no room for pride at church – you need to park that at the door.  But it just stood as another reminder that yes, what we believed then, we believe now.  What we knew then, we know now.   God is faithful & good and no matter how many springs come and go, He will get us through every one of them.

Amen!

 

 

 

No guilt in life, no fear in death—
This is the pow’r of Christ in me;
From life’s first cry to final breath,
Jesus commands my destiny.
No pow’r of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home—
Here in the pow’r of Christ I’ll stand.

No guilt in life, no fear in death—
This is the pow’r of Christ in me;
From life’s first cry to final breath,
Jesus commands my destiny.
No pow’r of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home—
Here in the pow’r of Christ I’ll stand.

No guilt in life, no fear in death—
This is the pow’r of Christ in me;
From life’s first cry to final breath,
Jesus commands my destiny.
No pow’r of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home—
Here in the pow’r of Christ I’ll stand.

 

 

9 years old

Mr. William John turned 9 last week!

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I’m coming to the realization that I probably have the worst memory in the entire world, but thank goodness I have kept a  journal almost since I could write.  This is a good thing, because when my brain fails me and won’t recall any memories of my kids when they were younger, I can go digging back through my journals.    So I took a peek back and I found something I wrote about Will when he was just over 2 years old…

“And my Willy-baby – I just can’t get enough of him.  With his blond hair and his love of cuddling – and how he gets so excited to see his dad when Jason comes home.  How he loves to snuggle in before a nap and read stories with me, he makes these sounds of satisfaction and I could just eat him up.”

How things have changed and how things have stayed the same!   I’m happy to say that he still loves to cuddle,  is always happy to see us and still loves to read.  But he’s growing up and he loves to write (like his mama?) loves to run and loves God, his friends and his family of course.  (Although once in a while he would probably contemplate trading a sister for a dog).

You know that old saying that you don’t know what you’ve got till it’s gone?   Well I think that for Jason and I it rings true in a slightly different way.  Losing a child has made us love and appreciate our remaining children that much more.  God has certainly blessed us with 4 wonderful gifts.

Happy Birthday Will!

 

 

Hardly know….

I hardly know what to say after all this time!   I’ve been a lazy blogger for sure,  but this cold weather seems to have dulled my mind and most of the time it just felt like I had nothing to write about.   After the first craziness of getting Sarah on a pump at the end of January and February, there hasn’t been really anything exciting going on.   Which might not be strictly true,  but when I think about what we were dealing with last year, things now just don’t seem that big in comparison.   But last year was so out of the ordinary, that getting back to ‘normal’ has been an adjustment, but I will say that normal is good!   Although crazy did include our Ava, so I’ll always look back on that time with some longing.

Since January things have been a little weird for me as well, because all the kids have all been in school and I’ve been home.  They were in September too – but the fall went by so quickly and then it was Christmas that I didn’t notice.    But ever since I quit my job to stay home with the kids before Will was born, I’ve always had a little person at home with me to care for.   And until last August, it was looking like a permanent position.  But then things changed and Sophia started kindergarten and it’s kinda left me high and dry.  But I’m taking this time as a gift from God – time to be quiet and allow my soul to heal.  And Jason and I have some hopes for the fall that will change all of this, so we will keep you posted!

I really enjoyed having the kids at home for March Break even though the weather turned on us.   But we went off and spent a few days with my parents which was wonderful as we got to spend some time with family that we hadn’t seen in a while, including this sweet baby…

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We were back home on Friday and I kicked the kids outside to make snow-sculptures for something to do and the results made me laugh…

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Soph and Sarah made this snow man…  love it!

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Sarah and her snow bear…

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Erik and his snowman crunching snowmen (he reads too much Calvin and Hobbes)

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And Erik’s friend with a cute snow pig…

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Will was sporting a migraine that day so couldn’t participate, but came out later to help judge.  I know it was nice for the kids to get out and play with some packing snow and some sunshine that feels like spring even when the air doesn’t!

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So normal is good, and I would really like to keep exciting at bay for now.  Unless it’s exciting in a good way.  But God knows exactly what we need and I am excited to see what this upcoming year will bring for our family!

6 Month Anniversary

Today is the  6 month anniversary  of our sweet baby Ava’s death… we’ve been without her for half of a year and I find it really hard.  I’ve said it before, but the more time that passes just makes me feel like I’m getting further and further away from her… it’s like I’m leaving her behind and putting more and more miles between us, and I don’t like it.  It’s been six months since I held her and kissed her and told her that I loved her.  Six months since we had 5 children and 6 months since we had to say good-bye to someone who we loved so very much.   And it’s tough, it really is.

But in this grieving process there are still so many things we are thankful for.   First off, we are thankful that people are still praying for us – even though its been six months and we don’t update often.   When people tell me they are still praying we feel so blessed that people have not forgotten us and that God is still laying us on people’s hearts.    Another thing I’m thankful for is just how busy our life is with four kids (no matter how much I complain).   In my life there isn’t often time to just sit and think about how much I miss Ava.  Lying in bed before we go to sleep is often when it hits Jay and I, but this long winter has tired me out and it’s not often I can stay awake for more than a minute or so, praise God for that.  🙂

And we know that we were fortunate that we were able to do quite a bit of our grieving before we lost Ava.  The actual truth is that we started grieving before she was born.  We always had a strong hope that she would beat the odds and make it –  but because we almost lost her a few times before she died, it forced us to take a look at what our future would look like without her.   It’s like we were able to practice grieving… and those times were incredibly painful, but it did help prepare us.   And because of that, we know that we are grieving in a complete different way than those who suddenly lose someone they love.  It’s just that for both I’m sure the end result is the same…   living with the memories of a person you long for, and missing them like crazy.

I miss my Birdy… I really do.

Oh that God gave us that precious gift, but only for such a short short time.  Having Ava taught us so much about God’s goodness to us and His incredible faithfulness that if I ever doubt God again I hope someone smacks me… hard.    And there is the promise that God used this time in our lives for His glory and to strengthen our faith and bring us closer to Him. We also know that it made us more aware of the suffering of others and I hope God will continue to keep using these lessons learned in our lives as long as we are here on earth.

Here’s another wonderful promise….

1 Peter 5:10&11 And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.  To him be the dominion forever and ever. Amen.

Praise God for His promises…. Amen!

The Highs and the Lows..

Now don’t worry, this post is not about the highs and lows of our Christmas break,  haha.  🙂  No, this post is about the highs and lows of living with diabetes… literally and figuratively.   Oh Sarah, December was a crazy month for her and her diabetes.

She’s actually had diabetes for over a year now as she was diagnosed December 20th 2012 (a day we did NOT celebrate) and it’s become a part of our life now, but it’s something we can never become complacent about.   Thankfully – and this is totally God’s goodness towards us –  until the beginning of this December, taking care of Sarah was fairly straightforward and this was because she was still in what is called the “honeymoon phase” of diabetes.

The honeymoon phase is when you still have some Beta cells (insulin producers) left in your pancreas that your immune system hasn’t gotten around to destroying yet.   Because your body can still make a little bit of insulin, it helps keep your blood glucose (or ‘blood sugar’ as we call it here) on a more even keel.   In Sarah’s case, we could always count on her body leveling her out at night.  If she went to bed with a high blood sugar, in the morning she would be back to normal, and she never ever woke up with low blood sugar.  So not only was she still producing a big of insulin, her body was still managing her glucagon well.   Glucagon  is a hormone made by the Alpha cells in your pancreas, and it’s function in the opposite of insulin, as it’s job is to bring up the glucose levels in your blood so that they never get too low.  Some of you might have experienced some mild hypoglycemia… where you feel all week and shaky when you’ve gotten really really hungry, well that’s when glucagon is supposed to go into action and tell your liver to release more sugar into your bloodstream.    When you have diabetes, even though the body doesn’t destroy your Alpha cells on its crazy auto-immune rampage, once your Beta cells aren’t functioning, your body doesn’t seem to be able to manage glucagon either.  So then hypoglycemia becomes a huge problem for diabetics because your body doesn’t stop it.   If you have too much insulin in your blood and not enough sugar then you can go low,  and if it gets too low, you can slip into a coma or even have a seizure.  Not good.

So like I said, up until December we were just going along, managing Sarah and keeping her fairly steady,  when all of a sudden at the beginning of the month it seemed very clear that Sarah was leaving the honeymoon period, and fast.    Her blood sugar levels were all over the place, and often really high and weren’t coming down at night like before.   This was frustrating because we thought at first that Sarah was just sneaking food and when she has high blood sugar she is MISERABLE!    And when you have four kids, when one is miserable they all are miserable it affects everyone.

When we went to the diabetes clinic at the beginning of December they saw her numbers and upped all her insulin as well as adding in some night-time insulin to help bring her down at night.  So this meant she had to start a fourth needle in the day (poor kid), but it still wasn’t helping.  So with the help on the nurse, we upped her insulin again, and then a week or so later had to up a third time, until finally we started seeing some better numbers again.    But then Sarah started getting lows,  where she would have too much insulin in her blood and her blood sugar would go down to low…  and since these lows were new for us, they were a bit disconcerting and rather scary.   Thankfully she is pretty good about telling us when she is feeling low, but on Boxing Day, when we went to my parents place, Sarah wouldn’t get out of the car.  We thought she was just playing shy or being a pickle, so we just left her there.  But after a few minute I went out to try to get her to come in and she wouldn’t.  We thought about just leaving her and were getting kind of frustrated that she was acting so weird when Jason thought he better check her blood and that’s when we found out she was low… really really low…. ACK!!!    Both the highs and lows can really affect Sarah’s behaviour and as a parent it’s going to be tough trying to separate her behaviour from the blood sugar side effects, especially as she gets older.

So things aren’t easy, but we still have Sarah with us and that’s enough.  And like we said before, Jason and I just are so grateful to God that for most of the year Sarah’s diabetes wasn’t an issue, that we could worry about Ava without having to worry about Sarah at the same time.  I know that we often like to say that God doesn’t give us more than we can handle, but I don’t really agree with that.  To quote a pastor whose blog I follow –   The Blazing Center –  Steven Altrogge said,  “God burdens us beyond our strength so that we will be forced to utterly and completely depend on him.”  a statement which I completely agree with.

People have so many times told us how strong we are, and I have to say over and over again… nope, it’s not us.  We’re not strong, we’re weak.  But we know the one who is strong and who is holding us in His hands, and we know that we can depend on Him utterly, even in death, even in diabetes.

Amen!

Psalm 55:22

22 Cast your burden on the Lord,
and he will sustain you;

he will never permit
the righteous to be moved.

Merry Christmas!

Just wanted to wish everyone a Merry Christmas, from our family to yours!

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Everyone here is excited that tomorrow is Christmas, and we are looking forward to all that the day will bring.

And I speak for all of us when I say that even though we wish we could celebrate as a family of 7 this year, we are doing good.  In fact, I’m jealous in a way that while we are celebrating Christ’s birth here… Ava gets to be with Jesus in heaven for Christmas this year, and it doesn’t get better than that.

Oh – and I’m excited to show you the birdy in the pic with the kids.  My uncle made it for us so that we can always include it in our family pics to show Ava’s place.  Isn’t that awesome?

It’s a beautiful Christmas eve here… the snow is falling and lots of Christmas lights are shining.  (Thanks Jason and Erik!)

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And I just wanted to make a quick shout out to all the nurses and dr’s who are working Christmas this year at Sick Kids.  We appreciated everyone in the CCU who took care of Ava (and Jason and I too) so well last December, we’ll never forget you.

Now, back to Christmas…

And they went with haste and found Mary and Joseph, and the baby lying in a manger. And when they saw it, they made known the saying that had been told them concerning this child. And all who heard it wondered at what the shepherds told them. But Mary treasured up all these things, pondering them in her heart. And the shepherds returned, glorifying and praising God for all they had heard and seen, as it had been told them. Luke 2:16-20 ESV

Amen!