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).

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

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

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snowmen

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

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

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

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

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

And a great verse from Romans 8:18

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

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

Amen!

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…

 

Nailed it

I am very aware of all my failures in life, they are too numerous to count.  But on the bright side some of my failures make me laugh and hence should be shared.  Take this for example, Sarah’s birthday cake… if I was going to try to make it as beautiful as Martha Stewart’s vanilla cake, then I can definitely say I nailed it.  lol

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Isn’t it just beautiful in all it’s sloppy glory?   I think I’ve known since I was 10 that you shouldn’t ice a warm cake, and that is especially true if you want to ice it with a concoction of pudding and whipped cream, which I found out apparently just melts on a warm cake.    Will I ever learn?   But it did taste good, so I suppose it redeemed itself.

So yes, Sarah did turn 8 a few weeks ago and it was fun to celebrate with her and appreciate her for all her gifts and abilities.  And just because you are 8 doesn’t mean that hair-brushing is a priority in life –  I mean really – it’s such an insignificant thing.  Maybe it will be a priority when she is 15?   Good thing she can clean a bathroom, sew and do lots of other thing really well to make up for it.

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And if that cake I made for Sarah’s birthday looked scumptious, then I’m sure you’ll appreciate this concoction…

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“Since when do chicked-peas, boiled eggs, peas, beets, avocado, blueberries and pears belong together in a blender?”, you might ask.    Especially as they were soon joined by joined by yogurt, milk and olive oil.   And since I can tell you that yes, they were blended together your next question might be,  “Who in the world would eat that mixture?”

Well this sweet little person would…

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Remember our little friend Aleeda who we met at Sick Kids?  She received a heart transplant July 2013 and is doing so well.  She came home from the hospital with a g-tube, and she was being primarily fed by that, but rather than push formula into her tube, her mom Tania opted instead to make her real food blends “purees” that mimic the nutrition in a formula supplement.  These are so much better tolerated, as in when Tania pulled the formula and started feeding purees to Aleeda, she stopped puking every day.    And Aleeda has thrived on them and since her g-tube was pulled will actually eat them orally, smart little girl.  I got to help Tania and made a few batches of them for the freezer,  but Aleeda is doing so well that she is almost eating all real food now.  It’s so wonderful to see her progress, I find it just amazing.

Alleeda and her sister Britton came to play with us one day while their mom was at the hospital with their new twin sisters.  My girl’s love Aleeda and her sister Britton , we just don’t see enough of them…

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And since Sophia is the baby of our family now,  it’s good for her to spend time with children younger than her,  I’m afraid that Sophia enjoys being our baby a little too much, but I can hardly blame her.

And now it’s Valentine’s day today and winter trudges on.  Thank goodness I can kick the kids outside to enjoy the snow…

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So I can enjoy some peace and quiet haha.      I do try to enjoy the winter as well, but more often than not it seems I’m enjoying it inside by drinking coffee and looking out the window.  I just venture out to take the pictures.

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Like this one of the moon… see, you need winter for pictures like this.

So even though my cakes aren’t winning any awards and winter is still here with a vengeance, we feel so blessed on this Valentines day to have a loving family and friends to enjoy it all with.

God is good!

A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another. By this all people will know that you are my disciples, if you have love for one another.”

John 13:34-35 

Amen!

 

 

 

 

 

 

 

God at Work

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

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

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

Here’s the link!   God at Work Magazine

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

 

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

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

Amen!

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

Lamentations 3:22-23

 

 

 

 

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!

Mama Pancreas

November is Diabetes awareness month!   I should have posted this last Friday on World Diabetes Day, but I’m not that organized.    Now perhaps I should have named this post ‘Mamma and Papa Pancreas';  but as I’m with Sarah all day, every day now–I really do feel like I can safely call myself Mama Pancreas without stepping on Jason’s toes.

Sometimes, actually lots of times, quite often really,  I tend to forget just how much Type 1 Diabetes has changed our lives,  and more importantly how it has changed Sarah’s life.  And this is the part that makes me what to stop and have a little cry for my daughter who needs insulin pumped into her around the clock, who wears an electronic device 24/7, and who can’t remember what it’s like to go a whole day without pricking her finger at least 5 or 6 times.   I know she would love to just go back to those days where she could just eat something, anything, without having to stop and think about how many carbs it is and then tell her pump that number so that she gets enough insulin to cover that food.   To not have to endure a site change every three days, where we freeze a little patch of skin on her tummy, and then insert another infusion site into her, and then have to put up with the rashes from the medical tape and spots on her tummy from previous sites that hopefully one day will fade.

Whew…. diabetes is not fun.  But we do have lots to be thankful for still, yes even in this.   First of; it’s a great day-in-age to have diabetes because they seem to be getting closer and closer to a cure – or at least effective work-arounds all the time.   So that is exciting.   And to be able to wear a pump and have the control that we have over Sarah’s blood sugar is wonderful too – even if it does mean I get the privilege of checking her blood sugar before I go to bed and sometimes even in the middle of the night.

And I’m so thankful that Sarah is who she is–a strong brave girl who doesn’t let diabetes get her down.   She swam all summer long, and was in and out of the lake and pool like a fish.  She plays hard outside and inside and it hasn’t stopped her from doing anything she wants to do.    Once in a while she breaks down a little and we have a little cry together over it, but then she’s off again.   And her insulin pump that she started wearing last year at the end of January has been wonderful and her A1C’s (a test they use to look at blood sugar levels over the past three months)  have been really good, so that is encouraging.  I try so hard not to get frustrated with myself and with her when she eats something and we forget to bolus and her sugar gets out of whack.   But really,  there doesn’t seem to be much of a point to strive for perfection with blood sugar control because even things like her getting really upset can affect her  levels.   It is what it is.   It’s a treatable manageable disease that God has allowed into our lives for His purpose and His glory and we accept it — sometimes rail heavily against it but I know that God understands that we still feel pain even when accepting His will.

Maybe things like this are put into our lives to make us look forward to heaven more… no diabetes in heaven, hurrah!   I’m just thankful that we have Sarah and that she is healthy and that we get to enjoy everyday with our precious daughter who is growing up so fast!!!

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And I love the way she doesn’t care that her pump is out there for the world to see,  in fact I think it’s great.

Here’s this verse AGAIN that we can cling too;  I can’t get enough of it…

 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.  Romans 8:18

Heaven is going to make all this so worth it!

Amen.

What we’ve been up too…

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

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

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

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

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

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

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

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

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And here are the four turkeys all together…

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

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

 

We miss you Birdy

Ava Samantha Grace Colley

December 4, 2012 – August 15, 2013

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We love you so much our sweet little Birdy, and can’t wait to see you again in heaven some day.

Love mom & dad, Erik, William, Sarah & Sophia

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

_________________________

Ava’s Life Slideshow (change the quality for better pictures)