Instead of perfection…

A few weeks ago Sarah and I were back at the hospital for another diabetes clinic.  We typically go every three months, but this time it had been closer to 4 1/2 and I was nervous.  To be honest, I’m always nervous at these appointments.   The team takes a look at all of Sarah’s numbers that have been downloaded from her pump, and they look at her A1C – a quick blood test they do that shows the over-all amount percentage of sugar that has attached to her red blood cells – and together this shows the team how well we’ve been managing Sarah’s diabetes.

And although that sounds benign on paper, as I’m sitting in the room waiting for the doctor to come I’m quaking on the inside.  I thinking of all the times that I forgot to give Sarah insulin, or we didn’t count carbs right and how often her numbers were higher than they should have been and then I feel like I’m  waiting for exam results.  Like they are going to come into the room and tell me if I’ve passed or failed, and all I can see in my mind is a big red “F” stamped on Sarah’s medical chart.     Now, in saying all of this I’m doing a disservice to Sarah’s wonderful medical team who has NEVER once treated her diabetes care like this, it’s just me.  It’s a heavy burden I put on myself and I’ve usually got myself so wound up before these visits I often shed some tears.

However on this visit I was so relieved to find that we passed!  hahaha   Sarah’s A1C’s had come down slightly (which is good!) and the doctor was fine with what her numbers had been over-all and I could finally relax.  I thanked the doctor for being so good to us, and always being encouraging rather than judgemental.  He asked me if I had heard his space-ship to the moon story.  I hadn’t, so he told me.  He told me the story about how U.S. President John F. Kennedy wanted NASA to put a man on the moon.  Finally in 1969 they were ready and Apollo 11 started it’s journey into outer-space.  The doctor then asked me how many times during that journey the rocket was actually headed in the right direction towards the moon.  My guess was 75% but he came back and said, “Nope, 5%”.   I was really surprised by that number… wow!  The doctor went on to say that we need to take that perspective with diabetes care.  We are always striving for the moon and those great numbers, but have to realize that it’s a process, that it’s going to constantly need tweaking and small changes here and there, but the most important thing is to keep going.  It’s a journey.    And I liked that.   Perfection is obviously what we are striving for, but the fact that NASA did something amazing without perfection has really made me think about Sarah’s diabetes care in a new light.  It give me a long-view sort of mindset – one that takes some pressure off the here and now, knowing that we probably never will perfect, but there is always tomorrow.

But God clearly wanted to bring this idea into other areas of my life, and one of those is my anger.  My anger and frustration with my kids when they aren’t listening or they argue with each other, or they don’t do what they are supposed to do, and how I can just get mad when life doesn’t go my way.  I get frustrated because in my mind I’m telling myself, ‘It’s not supposed to be like this, why can’t everyone just do what they are supposed to do so we can have the happy life that I want?’

I read this line regarding parenting from Auntie Leila over at Like Mother like Daughter the other day… “The sooner you learn that frustration is part of the process, the happier you will be.  Our worst enemy is thinking that things should be perfect.”   This quote almost knocked me over!  And it struck me that it’s so true!  I was looking at problems completely the wrong way, thinking that they shouldn’t exist at all, instead of realizing it’s just a part of life!

It’s kinda funny because my friend Tania is currently parenting 4 little girls, 3 years of age and under, and we get a kick out of 2 of her children who get frustrated so easily, even when they are trying to accomplish things beyond their skill level.  Like her baby who gets frustrated because she can’t crawl around as fast as her older sisters can move around, and so just puts her  head down and howls.  We laugh because we know it’s part of the process.  We don’t expect a baby to just stand up and walk one day… we know that it takes lots of practice, lots of falls and lots of frustration on their part and we accept that it is part of the process of growing up and learning a new skill.  So why have I decided somewhere along the line that things in my life have to be perfect all the time?  I’m not perfect, why would I expect this of others?   Clearly I need a paradigm shift.

Apparently perfection isn’t always a good thing anyway.  I recently read an article from John Piper entitled  “Parents, you can’t build heaven here”.   He said that too often we try to make heaven for our children in the right here and now.  We try to bring too much perfection in a child’s life – guarding them from too much or trying to give them too much in the name of our love for them, but this actually back-fires because it teaches children that they deserve perfection.  And then when life (as we all know too well) falls very short of the perfection they are used to – these kids don’t know how to persevere and deal with problems.  Instead of helping them,  we’ve actually hindered their growth.

The verse that is used in John Piper’s article is Philippians 3:12, such a great verse….

12 Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. 13 Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, 14 I press on toward the goal for the prize of the upward call of God in Christ Jesus.  Phil 3:12-14

Paul is telling us to keep going because we haven’t obtained perfection.  Yes, it is our goal, but we have to keep forgetting what is behind and straining forward towards our goal.  He doesn’t beat us up for not having obtained it… obtaining it is a future thing to look forward to, through the hard work of living and trying and striving.

I can see that it’s time for me to accept that frustration is a part of my life I can’t escape and so just deal.  And if that frustration causes me to stop and refocus, or learn something new, or teach my children something new, or make changes along the way to my final goal (which in my life is to be more like Christ), then right now I am willing to take frustration instead of perfection – knowing that when perfection finally comes it will have been well worth the fight.

 

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At least we’ve average….

In between my last diabetes post and this one,  things have gone down-hill, then more down-hill, then an even keel and perhaps finally we are on an upward swing with Sarah’s diabetes.  Can I just take a moment to say how rotten and horrible and down-right annoying diabetes is?   It is!  It’s a royal pain in the you-know-what and we will never get used to it and I don’t think we ever should get used to it.   And now I shall do my best to sum up the situation.

Back in November Sarah and I went to the hospital for a clinic/pump training day, and there we found her A1C’s had gone up a whole percentage.   This wasn’t great news – when they test your A1C ‘s they are checking the percentage of hemoglobin that is covered in sugar – and this gives them an over-all picture of how well you have managed your diabetes in the past three months.   And this test showed that Sarah’s percentage had gone up significantly and now was higher than they would like it to be.   It was upsetting because it’s means that I’m not doing a great job managing her diabetes – and it also means we were a statistic.  It’s a researched fact that when diabetics start using an insulin pump their blood sugar control starts out great, and their A1C’s tend to come down (that’s good) but by the end of a year – and that’s where we were at – people’s control over their diabetes tends to wane a bit and they typically end up back to where they were before the pump with higher A1C’s again (not good).   I think this is generally contributed to complacency, people just ride the wave of initial good control and stop paying attending.   So I went home kinda down and frustrated, but on the other hand determined to do better.

But things weren’t getting better and I was finding that I was getting frustrated with Sarah because she didn’t seem to care at all and certainly wasn’t doing things that were helping the situation.  And how do you try to tell a 8-year-old that there will be long-term consequences for their actions?   In my frustration I called a friend, and I’m so grateful that God has provided me with her.  Her daughter has had diabetes for over 10 years and so she is no stranger to all the ups and downs on dealing with this frustrating disease.  And guess what the first thing she told me I had  to stop doing was?   Well get this, she told me to stop feeling sorry for Sarah.

I had to stop feeling sorry for Sarah????

But of course I felt sorry for Sarah!   Jason and I feel very sorry that our healthy daughter was stricken with a disease for no known reason, and we feel sorry that she has to live with it and endure and the poking and prodding and it really upsets me just to think about what could happen to her if we aren’t diligent all of the time.   However, I could see what my friend meant.   Unknowing I was communicating my sympathy to Sarah and it wasn’t helping her, in fact it was hindering her.  Because I was feeling sorry for her, she was feeling sorry for herself, she only saw her diabetes as something bad and something that wasn’t fair.   And because of this I don’t think either of us were properly viewing it as something to be managed well – it was just a burden.   And I think that I was trying to shield Sarah from it – which meant that she felt she had no responsibility and no consequences.

It shook me to realize  that I wasn’t viewing it correctly –  and that it stemmed from me not realizing that God could have a purpose in this.  Jason and I had a clear understanding that God had a purpose for Ava’s life, and we completely accepted how that turned out.  But for some reason I could never see how diabetes could bring God glory.   But my friend went on to say that God did give diabetes to Sarah – it is His refining fire in her life,  He is going to use it for His glory and I shouldn’t feel sorry that God has allowed this to happen, just the opposite!  Of course God brings difficult things into our lives, but whining and complaining and feeling sorry for ourselves doesn’t accomplish God’s purpose, how could it?  But if we can see Sarah’s diabetes as something from His hand, to develop perseverance and faithfulness and to please Him by remaining under it, that’s the only place that we can find true joy in something so miserable as type 1 diabetes.

So after asking forgiveness I changed my perceptive and instead of having a good cry with Sarah about her diabetes,  we had a talk about how God allowed this for her and it was going to make her stronger and it was exciting to think of how God was going to use this in her life.  And it helped!   Her attitude towards it has changed (for the most part) and now she cares what her blood glucose levels are, and that’s great.   We still have our cries, it’s not easy living with this disease, but I’m happy to say through our tears I can remind her that God has a purpose,  and that has been wonderful.

And I wish I could say that at our next clinic visit at the end of January her A1C’s went down and all was well – but that wasn’t the case.  They stayed the same in spite of our hard work and it was incredible frustrating!  Grrr…stupid diabetes!  But the kind doctor told me that even though they would like her A1C’s to be lower,  we are right at the pediatric national average.   So we aren’t doing a great job or a bad job, we are just completely average 🙂    But things are starting to look up!   Last Sunday I shared with my small group our frustration with Sarah’s diabetes and I know they have been praying for us because these past four days we seem to be in a better groove and her daily numbers are coming down (that’s good) and I’m so grateful that we have a loving heavenly Father who although allows all these trials and difficulties in our lives, He never ever leaves us or forsakes us.  Not ever.

Amen.

 Be strong and courageous…. for it is the Lord your God who goes with you. He will not leave you or forsake you.”  Deut 31:6

P.S.   I just gotta tack this on to this post… with the rise of Type 2 diabetes, it’s not unnatural for people to get confused between the two diseases, but they are completely different and I’m learning to be gracious when people try to give us good advice, or ask if Sarah can eat something (she can eat everything!!)  Here’s a really cute type 1 diabetes rant…

 

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!

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!

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!

What a gift…

Well Christmas came a little early for our family today.   It all started when Jason and I were sitting in church this morning.    The sermon had ended and we were about to sing the final song when  Jason reminded me that last year on this Sunday we had gone up to the front after church and had been prayed for by our Pastor and Elder team as well as many friends before we left to go to Toronto the following day.   Oh wow… remembering that prayer time and what we had prayed for made me cry – as even then we were still hoping that God would reach down and heal Ava and spare her life.   So it’s a year later and we know now that healing Ava was not in God’s plan, and it’s sad because we miss her so much… and it’s hard not to think about what might have been.

So I was still a little sad after the service when I remembered that a dear friend had asked us to meet her between the services.  When Jason and I found  her, she led us around the corner to where a group of people were waiting – which was all very surprising – and low and behold they presented our family with the most amazing gift ever…  my entire blog posts of Ava’s life from start to finish put in photo books.   For real… every single blog entry and picture.  What an incredible gift and such a wonderful keepsake.

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Then the tears really came, but we all marvelled at God’s timing.  Just that this book had been in the works for so long, and they had hoped to give it to us before this week, but God knew that today was the day that I needed it most – just to show me once again that He is always faithful and cares about us so much.

And so we wanted to say a HUGE thank-you to Nancy who did all the work – and I’m sure it took weeks and weeks or even months of hard work to put it all together – we are eternally grateful.  And to all of our Harvest Family who made it possible, this gift means more to us that you’ll ever know.

And not only did Jason and I receive a set of photo books – Volume 1& 2 – but there was a set for each of our children – their very own keepsakes forever.   When we got home we were all sitting in our family room looking at our books and my heart was just over-come that we can go and read about Ava and look at her pictures whenever we want and that my kids will have these books to remember their sister by as she gets older.

Wasn’t that a marvelous way to start December?   The month where we start to look forward to Christmas  – the day we celebrate the birth of Christ… who came to give us the best gift we could ever receive… eternal life.

We are so blessed.   God is truly the giver of good gifts.

Amen.

A trip to Toronto

It’s Friday already!  And I really thought that I would post this post sooner… but apparently that didn’t happen.   So it was already 5 days ago when I took a train to Toronto to visit my good friend Tanya who I left behind in Toronto when we came home in August.   I’ve written about Tanya before and I’m so blessed to call her a friend.  We grew quite close as we walked the same path of being mom’s to our girls waiting for heart transplants and she was (and is) an inspiration to me and a huge source of knowledge.   She also makes me laugh alot… which is good, laughter is always good.

Anyhow, I hadn’t seen Tanya, or her daughter Aleeda who received her new heart August 2nd, or Tanya’s three-month old baby daughter Britton in almost 2 months –  so thankfully Jason encouraged me to go.   And I’m glad I did as it was wonderful to see them again.   Aleeda looked amazing and it was so nice to be able to hold her and cuddle her and see her happy, and she grew!  Since she has received her new heart she has grown so much and filled out, and her hair is longer and she looks like a new kid.   And I was also so pleased that she remembered me and wasn’t mad that I hadn’t visited her in so long.   And baby Britton is getting big and is so sweet!   She was my therapy baby when she was a born – holding baby’s for me is the best therapy I could ever get – and I even got to babysit her briefly while I was visiting this time.   I felt like a nice sort of aunt.

Here are the girls in their stroller, the sweetie-pies. I love how Britton is on the bottom shelf…

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Now even though Aleeda looks amazing, she is still in  hospital, which is rather frustrating.  Especially considering the fact that she has been in hospital since July 2012.  Can you just imagine?  Tanya has not lived at home with her husband in 15 months and it will still be a while before she gets all the way home.  Hopefully soon Alleeda will soon be released to live at the Ronald MacDonald House, but until her feeding issues get sorted out, she is stuck in hospital.  On Tuesday morning Aleeda did get a g-tube, so that ng tube you see on her face is no more – which is always nice to see.  But please please pray that God would intervene here and heal Aleeda’s tummy so she can go home.   My dream is that their family will be reunited and home by Christmas,  please pray with me!

I came home on Tuesday and I made it back just in the nick of time to watch William run in the cross-country finals.  And I when I mean just in time, I mean that I had to run and bum a ride of a stranger (another mom whose child was running) to make it there 2 minutes before the race started – but I saw him start and finish – and William came in 6th!   Out of all the grade 3 boys in the city,  running  a kilometer and half.   We are so proud.

And then Wednesday was back to real life for me, but I felt really unsettled and a bit down.  It didn’t seem that terribly hard to go back to Sick Kids when I was there, but coming home again made me realize once again just how much I missed Ava.    But it was more than that…  it was seeing families who we knew while we were there with Ava, and who are still there,  as well as meeting new families who have sick little one’s and even seeing Leo’s family as they waiting for him to come out of surgery.     It made my heart ache for these families who have to go through so much.    I can’t tell you how much strength we got from our faith in God as we walked through our journey with Ava.  It covered us with peace and joy even in the darkest times, and now I’m committed to pray for the families that I’ve met who are still walking through it.

But I know that losing Ava has changed me forever, and has even changed my view of the world.   I know now that I have no control over life, I know that bad things do happen and things aren’t always going to turn out as I want.  But am I worried, or discouraged or even depressed?   No I’m not. 🙂     Because I have a personal relationship with the one who has control over everything, the same guy that allows these seemingly bad things into my life for a reason and when I get to heaven He is going to show me how these things all turned out for His glory.   Praise God,  He holds it all in His hands.

I love this verse… here it is again…

2 Corinthians 4:16-18

16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Amen.

One week ago…

Ava’s been gone one week already.  We’ve been 7 whole long days without her, and I think it’s taken this long for my heart to really start understanding that Ava is really and truly gone.  She’s not just up on 4D being looked after by the nurses she loved, she’s in heaven, totally whole and at peace…..  but a place where I can never hold her or snuggle her again.  My mother’s heart is sore and hurting.

But to be very honest, Jason and I are experiencing such a wide range of emotions these days that half the time we don’t know how we are feeling.   We are feeling sorrow as we miss our daughter, but on the other hand we are feeling relief that she is no longer suffering and that she is at peace.   We are feeling some happiness at being home again but then guilt for feeling any kind of happiness at all.    It’s kinda confusing and I’m sure there is no ‘right’ feeling, but it’s not making anything easier!!!

And it’s also hard to come home where everything feels the same, but we feel so changed… it’s like we wish everything here was different too.

My friend Christa recently re-blogged something I had blogged last year – and when I read it, it hit me quite hard.  By the way… did you know that Ava died 1 year and 1 day after her first echocardiogram and initial diagnosis?   It’s crazy… but here is what I wrote after a procedure they did on Ava in utero to try to open up her blocked artery last year didn’t work…

And this is where faith kicks in.  Faith in God when things just don’t seem to be right, in fact in human terms they seem to be going wrong.   Sure it’s easy to rejoice and trust in Him when things look promising and we are hopeful things will turn out the way we want them too,  but how about when faced with the possibility that things might turn out exact opposite of what we want?   What if this baby still will lose the left side of her heart and have to have a palliation of her heart done where they turn the right side of her heart into a duo-purpose pumping machine and I have to spend weeks with her in the hospital, perhaps months away from my other kids and miss Christmas and New Years?  Honestly that thought breaks my heart.

However, again, even though I’m sad, I still I have hope.  I know God can still heal her, and even if that takes surgery and months of healing, I’m still completely trusting Him.  I’m not broken, maybe somewhat bruised, but definitely not abandoned.  And the Bible is full of verses to comfort me, starting with being still and just knowing that God is God.   I think John Piper once said that the things God does may be confusing, but God himself is Not confusing,  I love it because it’s true.

And as Jason pointed out to me, maybe His whole plan here is not to heal her, it may be to do some greater work which we can’t see,  which would be amazing as well.  God doesn’t give us all the answers, nor does He let us see the whole picture, but He does offer peace and hope and strength.

Isn’t that crazy?    Even back then God seemed to be preparing us that Ava’s life was all about God’s greater purpose than us just having a healthy normal child to raise.   And we can definitly say that He gave us more peace and hope and strength than I ever thought would be possible.

And so what I wrote last year still applies to me today…  I still have to trust that God’s perfect plan was accomplished when He took our beautiful baby home to Him.

One week ago today.

Here in the power of Christ…

Our family is re-united, and it’s actually back here in Toronto.   I didn’t end up going anywhere yesterday,  as I ended up staying for Ava because she wasn’t doing that well.

And then the doctor sat me down last night and told me something very hard…

Ava is dying.

Our sweet little Birdy’s body is breaking down and at this point she can’t recover without a new heart.

So please pray for our family today as we try to prepare to let her go to be with Jesus.    I can hardly believe that I’m writing these words, it seems so surreal…. but there is a perfect peace that is covering us right now praise God.

We have always loved the hymn ‘In Christ Alone’ and I wrote the last verse on Ava’s board in her room this morning…

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

His power is amazing, His peace is beyond comprehension.

Amen.