A moment…

So yesterday I had a moment.  That moment was defined by getting to church and then as worship began, starting to sing, and then starting to cry.  And then even though I was feeling foolish I wasn’t able to stop.    A moment.   And I knew exactly why I was crying, it just hit me like a tidal wave that I missed my Ava. Right there and then while I was standing in church, I just missed her horribly and it made me so sad.

Sometimes these waves of grief just hit out of no where, but this wave actually started on Saturday when I was out driving.   Something about the weather reminded me of being in Toronto in December three years ago and spending every day sitting at the foot of Ava’s bed in critical care.   And then yesterday on the way to church I mentioned that Ava’s birthday was coming and I asked jokingly what we were getting her for her birthday.   Jason said we were getting her a Christmas tree and that is exactly what we are getting her.  Last year we ended up getting our tree on her birthday and so we decided that we were going to drive out to the country and get a Christmas tree from the nice tree farm that is just down the road from her graveyard every year on her birthday.    And don’t worry – it’s not morbid at all – just happy and festive and it kinda feels like we are including her.

So the wave was growing without me even realizing it, and then the moment hit.  And the funny thing about my grief is that I’m never truly sad that Ava died.  Considering how sick that poor baby was, she is exactly where she is supposed to be – safe and snug in heaven and I can’t argue with that.  When I cry, I cry for the baby I didn’t get to keep down here.  I cry for a baby that my heart wishes was born healthy, with her little reddish curls and adorable smile.  That would have turned our lives and our house upside down.  That would have kept the kids busy chasing her around and would have been a fount of cuddles and kisses.  She would have added to our family so much.  On December 4th she would have turned three and I’ve missed it all.  That’s why I cry.   I guess it’s purely selfish, but it’s such an aching loss… I suppose like all loss is.   Isn’t it strange that most of our hurt in life involves loss?   But then grief is the emotion that God gave us that helps us process and release these things we’ve lost.  But I think that my well of loss is so deep I might have to grieve for the rest of my life, but that’s OK… even though I’m a puffy red crier, not a pleasant sight at all.

But as I stumbled out of the service yesterday to go and wipe my eyes and calm my heart,  the first person I saw was a friend who gave me a big hug and listened, I was so grateful.  And after church I made a beeline for a lovely woman in our congregation who herself has experienced so much loss and we talked and she prayed for me.  And that’s when I think of this verse in  2 Corinthians…

 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.  For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.   2 Corinthians 1:3-5

(Here are mine and Jason’s four blessed distractions which I am so grateful for….)


God is the God of all comfort and He is always there to comfort us in our affliction and then in turn we can comfort others.  And like I was comforted yesterday I hope that I can comfort others when I say that I’m OK.  I have lost a child, but am living testament that by God’s amazing grace and by his comfort, day after day my heart is healing.  I just still have my moments.


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.


Sung to sleep

Yesterday was two years since Ava passed away… 2 years!   Time goes by so quickly and it’s a little tough because the memories fade, but the ache our hearts isn’t going away.  I don’t think it ever will.

Last night when I put Sophy to bed I sang to her like I usually do.  I’ve always loved singing my kids to sleep at night – especially when they were babies.  I realized early on that hymns make great lullabies, they are often lilting and long – so I set out to memorize a few favorites and the kids would often be regaled by my singing them such hymns  as “Great is thy faithfulness” or “Be thou my vision.” (One of my favourites).  But I also would sing to them a little ditty that I learned from a children’s tape that we had growing up (yes, a cassette tape).  I just tried to find it on the world-wide web for reference, but can’t somehow.   The words go like this…

Jesus is coming
Coming for me
Like lightning, that flashes from the west to the east
In a moment
In a twinkling of an eye

The song is based on Matthew 24:27 when it talks about the 2nd coming of Christ and how He will return one day to earth…

For as the lightning comes from the east and shines as far as the west, so will be the coming of the Son of Man.

It’s something that all of us believers in Christ look forward too – the day that Jesus will come again to earth and call to Himself His own.  It will also mark the end of this age and the beginning of the next… good heavy stuff.

But back to my lullabies… singing that song to Sophy last night reminded me that I used to sing Ava that little ditty quite often.  My precious little Birdy – in the hospital, on the nights that I could tuck her in for the night.  I would sing to her like I sang to her brothers and sisters when they were babies, but in my mind I was always singing it to her with the thought that Jesus might just come and get her in the here and now.

And then in the moments when Ava did die – and Jason prayed that sweet soul into heaven, the relief of knowing that Jesus had finally come and gotten her and taken her home and released her of all her suffering was like a presence right there right with us.   I’ll never forget that sense of peace and release we were given.  Her earthy journey was over and her heavenly one just begun.  And I’m so thankful that’s where she is now – in heaven with Christ, praising and glorifying him and more alive than we could ever be here on earth.

Lately I’ve added another song to my nightly repertoire,  “10,000 Reasons” by Matt Redman.   We sang it at Ava’s funeral and for some reason it just struck me lately that it would also be a great lullaby and anyway,  Sophie likes it.  And I love the reminder that I have 10,000 things to be thankful for and that I can still bless the Lord with all my soul and that when I get to heaven I’ll have 10,000 years to sing His praises.   Hallelujah!

And I’m also so grateful for the memory of singing my sweet little Ava to sleep.



We love Monarch butterflies and every year for the past 6 years (minus Ava’s year) we have raised a few from eggs that were laid on the milkweed in our garden.  We were sad to learn that this year the Monarch population is the lowest it’s been in ages due to de-forestation in Mexico and a lack of milkweed in the US and Canada, so weren’t expecting to see any butterflies this year, but we were wrong!

Yesterday I caught this one drinking nectar from my pink coneflowers…..




And it would seem that there have been more butterflies around here than just that one, and they have been quite busy –  because in the past week we’ve found Monarch eggs galore!   We are now fostering 10 baby caterpillars!

So much fun.


Happy little chompers.

Out of every 100 eggs a monarch lays, typically only one survives to become an adult butterfly, so we are happily defying the odds here.    I found 3 more eggs today, so it’s time to share the love and spread some caterpillars around to our friends.   Seeing the butterflies eventually emerge from their chrysalis is one of the most amazing things I’ve ever seen and it never gets old.

I also found this beauty in my garden a while ago…


My friend’s sweet baby who has a penchant for playing in dirt.  Can you think of a nicer thing to have growing in your garden?

Neither can I.

Not even monarchs.  :)


Oh dear, you made me cry

Back a few months ago, my friend Lisa told me that they were going to participate in Dream Fund’s event ‘Wings for an Angel’ and she asked if it would be OK if they released a butterfly in Ava’s name.   Of course I agreed and was honoured that they thought of our sweet little Birdy.

And I’m even more honoured because Lisa is a mom to another little heart warrior Jake  who was born 4 months after Ava (we met at SickKids of course).  Jake has been through a ton, but is doing well and is at home with his big sister Georgia and I know that Lisa has her hands full – and that they took time to do this for others just makes me smile.

You can read about the butterfly release and see pictures here…  Living Whole Heartedly with Only Half a Heart

And yes, reading about it made me cry a little, but only because we miss Ava, and seeing the pictures of the other babies that were lost make my heart ache for their families.  But through it all, even though I miss my daughter, I know that God’s ways are higher than mine and I can cling to the hope I have for eternity.

Job 11:7-9

“Can you find out the deep things of God?
    Can you find out the limit of the Almighty?
It is higher than heaven—what can you do?
    Deeper than Sheol—what can you know?
Its measure is longer than the earth
    and broader than the sea.’


Where my heart is today…

Today my heart is with the Syme family as they mourn the loss of their sweet daughter Evynn…


A four year survivor of hypo-plastic left heart,  and a receiver of a heart transplant that so sadly didn’t end up saving her life.

Their blog:  A journey to a Whole Heart

Please join with me today as I pray for this family.

Once again…

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26


Ava’s Story

I’ve been meaning to write our Ava’s Story for a while.  Since I had to opportunity to write it out for our church newsletter I decided it was the perfect opportunity to put it all together and finally publish it here.  

“They are worried about your baby’s heart.”

This was not the news I was expecting when I answered the phone call from the midwife.  That afternoon I had gone for my routine 19 week ultrasound and in my hands was an ultrasound photo showing a precious baby girl.  We already had four children – so how could something be wrong with this pregnancy after four healthy ones?

Three weeks later Jason and I sat on the edge of our seats at in the pediatric cardiology department of our local hospital.   Even to our untrained eye the echocardiogram that had been done didn’t look normal.   Finally we were called in by the cardiologist and his first words to us were  “Let me show you what a normal baby’s heart looks like, and then I will show you what your baby’s heart looks like.”

All I could say was, “Pass the Kleenex.”

The Cardiologist explained that our baby had a serious congenital heart condition called critical aortic stenosis – where the artery coming off of her left ventricle was so small, it was affecting the left side of her heart.  The most probably outcome of this would be hypoplastic left heart syndrome, where the left side of her heart would stop functioning and she would be born with only a half of working heart.    She would need open-heart surgery right at birth if she survived the pregnancy.   Or we could abort her now, wait until she was born full term and then hold her until she passed away, or try an experimental procedure in utero where they would try to fix the problem.

We left that appointment feeling completely stunned, not really believing this was really happening to us.  I was very emotional and just wanted to go home and cry, but we had to make a decision on the experimental procedure quickly and we knew we needed to talk to one of our Pastors.    Thankfully our Pastor Leo met with us right away and prayed for us and told us that going to Toronto was a ‘no brainer’.

After a lot of prayer and talking things out with family and friends, we found ourselves at Sick Kids Hospital in Toronto a few days.   We had another echocardiogram and talked to another cardiologist. He explained this ‘experimental’ procedure and said that if it succeeded,   baby’s swollen left ventricle would heal and a minor valve repair surgery would be all she’d need after birth.  This procedure carried a huge risk to the baby, but we felt that this was her best chance, and God gave us tremendous peace, so we agreed to have the procedure done.

We walked across the street to meet with the Obstetrician at Mt. Sinai who would do the procedure.  After waiting over five anxious hours to see him, we were finally called in.

The baby was miraculously in the right position and so the doctor and his team wanted to do the surgery immediately.  In a whirl-wind, Jason rushed to have me admitted while I was being prepped.  I was nervous and excited, but mostly hopeful that this would work.  Cardiologists were called from Sick Kids Hospital and the team was minutes away from doing a procedure on our 24 week-old unborn baby girl.

God truly answered our prayers and kept that baby in the right position until she could be sedated, then going in through my belly and into her chest wall they preformed a balloon dilation on her aorta that was so tiny and closed it was hard to believe the doctors possessed the technology and ability to actually try to fix it.   In less than 9 minutes it was over.  We praised God for His goodness, believing that He was going to heal her. The next day after a quick ultra-sound the surgery was pronounced a technical success and we headed for home.

Then came the heartache. In the next few weeks and months as we kept going back to Toronto for more appointments and echocardiograms it became clear that the baby’s heart was not healing.  Even though everything had pointed to God’s hand in that intervention, her left ventricle was slowly dying. We had to face the fact that our baby would be born with only half a working heart.

All that kept going through our mind was why did God allow this to happen if it wasn’t going to work?   We still don’t have the answer for that question. But we just clung to these verses in Isaiah 40:27,28,30b when God asks the people of Israel why they question Him – their way isn’t hidden from Him, He is the everlasting God, His understanding is unsearchable!

And this is where our faith had to kick in.  It’s easy to trust God when things are going right, but now things were going wrong and it was so easy to turn to despair.  But knowing that God knew what we were going through and that His ways were higher than our ways allowed us to choose everyday to trust in Him.  To trust Him and put the life of this baby in His hands.    In the months leading up to her birth and impending surgery, all we felt we could do was trust that God would be glorified however this story played out, knowing that God loved this baby and had a perfect plan for her life.

Our daughter Ava Samantha Grace was born Dec  4, 2012 in the early hours of the morning at Mt. Sinai hospital.  I was prepared for them take her away immediately, but I was not prepared for her to be as purple as a blueberry!   Ava’s heart defect was depriving her of oxygen so they quickly whisked her away to stabilize her.   An hour later, after allowing my husband and I take a quick peek at her she was taken to Sick Kids Hospital.

Two days later I was walking beside Ava’s bed as they took her to surgery.  Jason and I wondered if we would ever see her alive again.  During the long and difficult six-hour wait, Psalm 23 was on my mind.   It seemed like Ava was walking through a valley where death was lurking in the shadows.   We placed our trust in God knowing that He is the giver of life and we prayed that He would be guiding the surgeon’s hands and holding her safely in His arms.

She survived the surgery!  But now back in critical care she looked more bionic than baby, there didn’t seem to be a square inch of her that wasn’t covered in wires or tubes. She was still on a ventilator and her chest was still open, the only thing covering her tiny beating broken heart was a piece of gauze.

The days were long as all we could do was sit by her bedside, waiting for her to stabilize.  We couldn’t hold her, only touch her hands and stroke her head, and pray for her to recover.    One nurse commented that we were coping so much better than other’s in our situation and we knew it because God was keeping our hearts focused on Him and His plan for our little Birdy.

Finally, almost two weeks after her surgery, Ava’s sternum was fully closed and things seemed to be headed in a good direction.  But God still had some challenges for our family to face.   The very next day, I took our daughter Sarah who was 5 at the time to a walk-in-clinic, only to be sent back to Sick Kids. It was there that she was diagnosed with Type 1 Diabetes.    This was a huge blow to Jason and I, and it was so hard to understand.  We were dealing with so much with Ava, and now we had another child with a life-threatening disease, a disease with a steep learning curve.   It was five days before Christmas and the stress on our family and our relationship was incredible and we didn’t know how we were going to cope.   It was hard to keep it together in front of the children, but thankfully all they were thinking about was Christmas.  To be honest I didn’t want anything to do with Christmas, there didn’t seem to be much to celebrate that year.  But once again, God showed us through our children’s joy on Christmas Day that we still had our family and His love and those things were worth celebrating.   Going forward we decided to divide and conquer.  Jason took on the diabetes education and care for Sarah and I concentrated on Ava.

We were finally able to take Ava home February 11th after 68 days in hospital.  We had battled feeding intolerance and heart issues for our whole hospital stay, but the staff was now confident we could care for her at home.   It wasn’t home for good and we knew that.  Ava would need another heart surgery when she was around 6 months old, but for now we were thrilled to move back home and have our family all together.

We loved having Ava home, but it wasn’t easy!    Her care was demanding, and her feeding and medication schedule kept me busy almost 24 hours a day.   The doctors had warned us that many babies with this defect don’t make it through these first months, so we tried to be diligent in her care and were in touch with her heath care providers daily.  Thankfully so many people pitched in to help to keep our home running smoothly and our church organized meals for us and my mom would often stay and Jason  was keeping good care of Sarah and the other kids.   Our family had adjusted well to this new crazy life of having Ava home, the kids helped out when they could and showered Ava with love.

Unfortunately in mid April, Ava was hospitalized in London with what turned out to be influenza B.   She was quite sick and even when she got home things just didn’t seem to be right, her breathing was laboured and she would get clammy.   All we could do was to hope and pray that  God would heal her little body so that she would be healthy enough to get her second surgery which was coming up.

On May 5th  Ava was well enough that we could take her to church to have her dedicated.  Our Pastor Norm prayed for her and we were so encouraged by our church family.     But five days later we were back at Sick Kids for a routine clinic visit and it was then that they said her heart function was decreasing and we would have to stay, they were going to admit her.

It was now May 10th, Jason’s 40th birthday , Ava was five months old and I couldn’t believe that she and I were now back in Toronto.   Jason and the kids were still in London so our family was separated once again, however we were confident that it would not be for long.  The doctors had been very positive and were saying that if Ava could have some testing done on her heart in the upcoming week, then they would plan on booking the surgery she needed for the week after.  I was envisioning a speedy recovery for Ava and being back at home that summer as a family reunited.

Jason came down to be with us for one of Ava’s major tests – a heart catheterization.  She would be put under and a camera inserted into a blood vessel in her thigh where it would travel to her heart so the doctors could do some diagnostic testing.   We were confident that the results would be fine, and were totally unprepared when the surgeons came back with bad news.   Ava’s one and only heart valve was terribly leaky.  It was the culprit behind her poor heart function and it was raising the pressure in her lungs, basically removing the possibility of surgery.   This was devastating not only for Ava’s sake, but I started to see my plans for returning home and reuniting our family start to crumble.  The medical team started tossing out the words ‘Heart Transplant’ and these words soon became our reality.

On June 11th, when Ava was 6 months old, she was officially listed to receive heart transplant.  But this wasn’t a cure, the medical team were very clear that receiving a heart transplant is like trading one heart disease for another.  And not only that, but waiting for a heart could take from 6 months to a year.  A very long time, especially considering Ava’s deteriorating condition.   Jason and I were doubtful that she had a year to wait.

Thankfully were we able to get another apartment at the Ronald MacDonald House fairly quickly, so now our family was at least all in the same city, but we didn’t know how long our stay in Toronto would be.  Would we be there weeks, months, or even a year as we waited for a heart?   Ava wasn’t doing well and a few times we came close to losing her and we just kept praying that a heart would come fast.    Those were very tough days as I walked to the hospital each morning, not sure how I was putting one foot in front of the other.   Facing each day was becoming more difficult, but I never walked alone.  Each day, God would remind me of a verse or a song, or someone would call or come to visit or leave a message on our blog that would encourage my heart.    Jason and I knew that God was carrying us through each day and He was being so faithful

The end of July came and Ava was getting worse.  She was sleeping most of the time and it was clear she was in heart failure.  She was puffy as her heart couldn’t move fluid around her body, and even though she was on an adult size dose of diuretics, she was gaining fluid every day.  She needed help to breathe so she was on CPAP which was helping take some of the load off of her heart,  and she was on the highest dose of the heart medication that they could give her.   We were constantly talking with the palliative care team about how to keep her comfortable and how to prepare our children if something happened to her.  We were praying desperately for a heart which was the only thing that could save her, but it hadn’t come yet and time was running out.

Finally, on August 15, 2013 we had to say good-bye to our precious Ava.  God choose to heal her not by sending her an earthly heart, but by taking her up to Him and giving her a brand new body that would never hurt again.   It was bittersweet because although it was so hard to say good-bye to daughter – it had been harder still to watch her suffer and we felt God’s peace in knowing that this had been His perfect plan for her all along.

It’s been over 18 months now since we said goodbye to our precious little Birdy.  Often I think about how life would be if we had her still and my heart aches for the loss, but deeper down, I know that my heart is healing.    We have no bitterness or anger and looking back all we can see is God’s faithfulness and goodness to us, and we look forward to the day when we will see our Ava again.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

This is Ava’s verse that we were given and it’s now on her gravestone.  We hold on to this verse knowing that even though Ava’s heart did fail,  God is now her reality and our strength.

You don’t know the half of it

Last November, JDRF  the leader in research and advocacy for type 1 diabetes put out some videos called “You Don’t Know the Half Of It“.   They showed interviews with people or children with type 1 diabetes who talked about what it’s really like,  the things that people don’t see and don’t really understand about this disease.   Jason said the video’s were depressing, and I agree, they kinda were. :)   But really, I think that was the point.    Those smart people at JDRF know that most people only see the outside of the disease, and they really wanted to show the darker side, the hard things about living with diabetes that people wouldn’t ever see.

But these videos got me to thinking that even though our struggle here is with diabetes , I know that so many people are struggling with different things.   Our family has received a crash course in type 1 diabetes, but in turn we know so little about the cystic fibrosis, the fetal alcohol, the ADHD, the autism and the congenital blindness – and the list goes on – that my friends and their children are dealing with.    I many have gleaned a tiny bit of information from articles I’ve read, and picked up a few insights from spending time with these children, but do I really know the half of what they are dealing with?   Probably not.

And can I tell you something?   I RESENT it very much when kind-hearted people have told me what I should be doing for Sarah, and are sure that if I just did this one thing her diabetes would be easier to manage.  Thankfully this hasn’t happened very often, and to be honest I’m not sure why I get upset.   Maybe it’s because diabetes already hurts and I already know that there isn’t an easy way out and I wished this person really knew what they were talking about and what we were going through.

But then I kinda of cringe here, because I know that many times my pride has deceived me and allowed me to believe that I have some special insight into other people’s problems and have allowed thoughtless opinionated words to come out.  It’s makes me sad because I don’t want to be that person, I want to be wise!!!   I love that verse in James (James 3:13-18) when he says, “Who is wise and understanding among you?”  And guess what, wisdom isn’t pointing the finger because I’m harbouring selfish ambition, or being proud and therefore critical.  And it’s certainly not telling others what you think they should be doing.   James says wisdom from the Lord is  “first pure, then peaceable, gentle, open to reason, full of mercy and good fruits, impartial and sincere.”  

I heard a quote recently that made me laugh – it was “Not my monkeys, not my circus”.   I liked it because I know how easy it is to get drawn into things that really don’t have anything to do with me.   And in most cases, especially when it concerns other people’s children,  I need to remember that I don’t know the half of it.


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).


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.



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.


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.


 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…