A sunny peaceful place…

Today the girls and I and Grandma went to visit Ava’s grave and put a few flowers on it.  I hope this isn’t super morbid or anything, but I wanted to show you what a sweet peaceful place it is where we laid Ava to rest… just a little country cemetery where the only noise you’ll hear is the birds and the breeze.

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Ava’s resting place is in the top center of the picture… where the grass sitting up higher with the bouquet on top between the two headstones.   It’s certainly not a morbid place for the girls, they seem to enjoy going and today they enjoyed pumping water from the old-fashioned well and watering Ava’s grass – although Sophia kept saying we were ‘watering Ava’.  Oh dear.    Because it’s a small country cemetery you can plant flowers on the graves and Sarah thought that we should water all the flowers on everyone’s graves, but we declined for lack of time.  We watered the flowers in the cemetery’s flowerbeds and called it a day.

And talking of days,  tomorrow the kids start school!   I’m really looking forward to having us all back in routine and I’ve purposely planned for this week to be busy so that time won’t weigh heavy on my hands.   It helps that Jason is still off this week so I won’t be alone.  And we are travelling to Toronto on Tuesday and will be at Sick Kids to pay a visit to Tanya and Alleeda and baby Britton – as well as all of our friends on 4D!!!   I can’t wait… I miss everyone so much and they have been so supportive that we feel very blessed.

It’s hard to believe that this coming Thursday it will be 4 weeks since Ava passed away.   The reality of her being gone is starting to sink in and even last night I was feeling really down until I was encouraged by a friend, and then I thought of a verse that another friend had sent to encourage me,  Romans 8:18 where Paul says…. “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed in us…” and it was such a good reminder to me that yes, there is suffering in this world, but it’s all worth it.  And I can tell you that I miss my baby from the bottom of my heart, sometimes the tears won’t stop and I just wish she was here.   But you know what,   I’ve come to realize that I would do it all over again – every minute with Ava.  I would because of what she taught me and how God changed me, and the people we met and how our family grew together and how we leaned to count our blessings.

So praise God that even now I can even now appreciate a sunny peaceful place, remembering with joy that Ava isn’t really there, she is alive and rejoicing in Heaven and someday I will see her again.

Amen.

Not the first day of school

Ha!  Today’s post should have been all about the kid’s  first day of school – but we are still at the cottage and so obviously there was no first day of school today… lucky us.    But this was planned and the school knows and I’m hoping that it will be an easy adjustment for the kids to start school next week instead although I’m sure it’s not the best thing in the world.    But Jason and I are just not ready to go back to real life quite yet, and I don’t think the kids are either.

We are all doing well on the whole,  and still enjoying our time here at the cottage, but we still have our times of sadness.  Last night Sarah wanted to watch Ava’s slide show again that I made for the funeral, and it ended up with Sarah and I crying our eyes out.   And then William joined in crying with us at bedtime… poor guy.   I’ve noticed that William isn’t quite himself these days and I think he might be a little bit depressed, and it’s not just Ava being gone.  I’m sure for him it’s all the changes that have happened to our family.  We moved home from Toronto,  but then we were just home for a week before we left to come to the cottage and we’ve been here since.    We haven’t been settled in one place for a long period of time and William is a child who needs routine.  We all need routine and I know it will be good when we finally get there.  It will even be good for this guy even though he’s already started with his typical dread of going back to school combined with his love of buying new school supplies.

Erik

Thankfully our litte Sophia seems to be taking everything in stride including starting school next week.   Here she is with that picture of me that she drew in the sand I promised earlier…

Sophsand

I love it when the kids draw pictures of me,  it makes me laugh.     And she was busy drawing Ava in the sand there as well… I don’t think Ava is ever far from her thoughts.

Sophia wrote (ahem… scribbled) in a book a few thoughts about Ava the other day, and when she read them back to me she said she wrote…  “Dear Ava, I know that you are dead, and I know that it’s sad.  But we can still have fun without you and we can play with our cousins, like katie and Tyler.”   Very truthful and practical of her really.

And talking of practical, next week will bring school, routine and back to ‘normal’ life for our family.  But what I’m worried about is where does that leave me?

It leaves me with four kids in school and no baby to care for.  And not only will there be no baby to care for, but up until August 15th, I was committed to caring for a baby who had a lot of needs and who would probably some sort of care for a very long time or perhaps even her entire life.  There would have been the heart transplant issues, but we would have had to deal with issues that would have come from Ava’s Tuner’s Syndrome as well.   We would have spent our days going to Dr’s appointments and therapy appointments, and it would have been busy and hard, but there would have been purpose it in all for me.

Now I’m left with a space in my life where all that was supposed to be and it’s got me worried.   I know that everyone says that my life will fill up quick and I won’t have time on my hands, but I think it will be hard to go back to ordinary things after being involved in something so important.

And then, as always it seems, God brings me back to His promises in my times of doubt.    I was reading back to last September when we knew for certain that Ava would be born with only half a working heart and I was worried about the future then too and I included this verse in one of my posts…,

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.  Deuteronomy 31:8

And then today’s verse from BibleGateway,com was

Thus says the Lord, your Redeemer, the Holy One of Israel: “I am the Lord your God, who teaches you to profit, who leads you in the way you should go. Isaiah 48:17 ESV

Even though I’m worried about my life going forward, God isn’t worried.  He’s probably shaking His head at me right now and wondering why this girl who He has been so faithful to for so long is even thinking about doubting Him once again.

My job once again is to trust and pray and co-operate with whatever it is God has planned and not be afraid or dismayed by what is coming next.   Surely if God was able to carry us through  the past 8 months (which He did splendidly) I can trust Him once again going forward from here.

But please don’t stop praying for us as we adjust and move forward…. we still appreciate all your prayers and kind words!

the Silver Lining…

Well we have been at the cottage for four days and now and it’s so very peaceful here.   Being here is definitely the silver lining that coats that little gray cloud in my heart.   And I think the best thing about being at the cottage is that life doesn’t really move on when you are here… well it does in the way that every day is a new day.  But the cottage looks the same to me as it did 17 years ago and times seems to move so slowly here.  This is just what our family needs… space and peace to just process what happened and time to be together and comfort each other.

Although last year when we were here is when we received Ava’s initial diagnosis (we had driven back to London) and my memory is playing tricks on me.  I still seem to recall the pain that we felt last year, and sometimes I feel like I must still be pregnant and waiting for Ava….  but it’s only for a nanosecond before I know that Ava’s already come and already gone.   But being here and spending time with family and with God is helping to ease the hurt.   And if I hadn’t forgotten my camera cord I could show you a picture of what we see everyday, but I did forget it, so I borrowed a pic from last year….

beach

When I do find my camera cord, I will show the picture of me that Sophia drew in the sand… what a laugh, that little turkey.   Today Sophia and I were walking and I said, “Sophia, guess what?”  And she replied, “Oh mom, I hope you’re not going to say you love me again.”   Apparently I’ve been telling her I love her too much, and so this four-year-old daughter of mine asked me yesterday if I could limit myself to just telling her that I love her once a day.   I’ll repeat, she’s a turkey.   But that is another part of the silver lining… our children.     I was so focused on Ava for so long that I didn’t realize how much I missed my other kids.   This time has been so wonderful connecting with them and getting to know them again.  God is good.

It’s funny being here in another way though because  I remember a few weeks ago sitting outside in the court-yard of the Ronald MacDonald House and shutting my eyes and trying to pretend I was at the cottage.     But now that I am at the cottage,  sometimes I find myself wishing that I was back in Toronto with my sweet baby.  I still really miss Ava and I can’t believe she’s been gone two weeks already.  It seems like it was just yesterday.

But I’m keeping in touch with my friends back in TO.   My friend Tanya and I talk almost daily (Aleeda’s mom) and once in a while in the evening when I’m blue, I call up to Ava’s ward at Sick Kids and chat with the nurses.   I miss them as well and I’m glad they don’t mind talking to me because it’s my 4D therapy…haha.     Tanya and I became really close back in our days at Sick Kids as we were living the same life as mom’s waiting for hearts for our sick babies, and even back then we talked about how our friendship was going to be the link back to that life if anything should happen to our girls.   it’s hard to have a life you’ve been living – even if it’s not the most ideal life – just ripped out of your hands and thrown away.  All the relationships and friendships that were made in Toronto and our lives there are now over.

But we have plans to go back and visit soon and I am looking forward to seeing Tanya and Aleeda again.    Aleeda is coming up on 4 weeks tomorrow since she received her heart.   And she is out of critical care and back up on 4D now, but is still struggling.    Because she was so sick when she received her heart, her progress is slow, but it’s steady.  But please keep her in your prayers as they try to get all the kinks worked out.   Tanya is being amazing as always looking after Aleeda, as well as Aleeda’s new baby sister Britton.  But I know it’s not easy and I know that every day they have to stay at the hospital, is another day they aren’t all together as a family.    I just pray that Aleeda and Tanya’s and their family’s life can start again soon on the outside as they have been there so long.

I apologize if I’ve rambled tonight.   But even though it’s only been two weeks since we lost Ava, this little silver lining is bringing back some joy into my life.  And praise God once again for being able to bring joy – even in the midst of pain.

A tiny vacation

So I’m pleased to report that Ava still is doing amazing.  She is spending quite a time off her CPAP these days and she is happy and full of smiles.  It’s kinda strange in a way because her weight still seems to be creeping up, which would make us all expect that she is holding on to some extra fluid, but she’s not acting like she is fluid over-loaded.    So we’ll just take it as it is, and praise God and continue to wait for a previously loved heart to come our way.

And Jason and the kids had a wonderful time away at the cottage with my parents and my brother John and his family.  I talked to them everyday and although I was missing them like crazy, I was so happy to hear that they were having an amazing time.

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kids

And they were originally planning on coming home on Thursday, but as I was leaving Ronald MacDonald House Thursday morning I happened to stop and talk with one of the staff, and she informed me that the Toronto Health Unit had decided to keep the house closed another 5 days due to the Chicken-pox scandal that I had written about earlier.   I was kinda annoyed to hear this news because it means that Jason and the kids would be coming back to still nothing going on at the house…  no summer program or craft room and no home for dinners, nothing.  So after I told Jason the news, my parents graciously offered to let them stay at the cottage until Saturday…. which was great for Jay and the kids, but I was kinda sad because I was already missing them so much and now I wouldn’t see them for a few more days.

But than Jason called me right back with this bright idea of me hopping on a bus to Parry Sound as soon as I could  so I could join them at the cottage for two nights and then come back with them on Saturday.   What a great idea!  The nurses encouraged me to go, and so I got my act in gear, and  at 2:30 pm I was on a bus headed North.  Now I always hate leaving Ava, but feeling torn comes with the territory of having a child in the hospital as well as healthy children.  And to be honest, I feel much better about leaving her when she was feeling better rather than leaving her when she isn’t doing well.

So Thursday night I was reunited with my family, and on Friday I got to enjoy a full day of beauty that is the lakes and trees and rocks of Northern Ontario.   I think God’s timing is perfect.  It was just wonderful to get away from the city and relax and refresh and gain some perspective again on our situation and know that God has a plan and is keeping us in His hands.   I love that He knew I just needed to rest and spend time with my family and my parents, and God arranged it perfectly.

And so today we came back to Toronto.   The girls and I went to see Ava this afternoon and she was again, very happy and full of smiles.  Isn’t God good?   We really attribute her turn-around to prayer, and God’s goodness.   Just two weeks ago I was sure that we were losing her, and now she is feeling better than she has felt in ages, and it’s astounding and amazing all at the same time.

We feel so blessed as a family and I’m so thankful for even just a tiny vacation.

Amen!

My theory

These past few days have been crazy again!   And it was good to be home for a bit, but I won’t lie, being home is also stressful.  Stressful in the way that when I’m there I just want to stay, but then I’m torn because I miss Ava.    And Erik was started to say how he just wanted to stay home and was starting to say it a lot, and so yesterday Jason and I decided since home is just not our reality right now, it would be just best to head back to Toronto.    We did leave rather late last night, but usually when you leave late at night there isn’t any traffic so it works in your favour.  But not last night!  We hit construction around 11:30 pm on the 401, so had to take a detour, just to hit downtown Toronto at 12:30 am.   And it seriously could have been 12:30 pm, it was that busy.  We weren’t sure if a show or a game had just gotten out before we arrived, but there were people and cars everywhere which definitely slowed us down.  We finally got back to the Ronald MacDonald House around 1:00 am… fun.

This morning I was so tired I called the hospital at 8:00 am to say that I would be shortly and to check on Ava, and was reassured that Ava was fine.   But then around 9:30 am I received a phone call from Ava’s nurse to say that Ava’s heart rate was up, and with that her temp was coming up and she spiked a fever of 39 degrees and I should come in.   Oh Ava.

And to make matters worse, when I got to the hospital,  I found that they decided that Ava needed to be watched more, so they moved her out of her private room and into a true “step-down” room where there are 4 children and two nurses who never leave the room.    This was upsetting because if we aren’t in our own room our kids can’t come and visit Ava, and if Ava can’t wait for a heart, this might be all the time we have with her, and it would be very hard if we couldn’t all be together.

I called Jason and asked him and the kids to pray for Ava, and to pray that we would get moved back to our own room…  and not 10 minutes later we got the news that they did decide that it would be best for us to be back in our room, praise God!    We were going to have to wait since they had moved someone else into there,  but they would be out later in the day and then we could move back.    It was so cool that God answered the kids prayers and they were pretty pumped about it.  William thought it would be cool if everything he prayed for got a ‘yes’ answer so quickly…  which made me really glad that God has a sovereign will. 🙂

So the end the day saw Ava back in her own room.  The poor girl slept most of the day today, she clearly wasn’t feeling that good, and because of the fever they took more blood cultures from her… this probably makes 100 blood tests in the past weeks.  They just can’t find any infection.   We did have that one positive culture the other day, but it may have been a one-off because nothing else has ever been found.   She seems to be showing signs of infection, but I’m starting to have my own theory.  I’m wondering if Ava is in some kind of pain, which causes her heart-rate to go up, and because of her heart-failure, the increased heart rate actually causes her temperature to rise.  This would be opposite to the premise that usually applies, that an increased heart-rate is caused by a fever.

Who knows, I’m certainly no doctor, but when I called tonight at 9:00 pm to see how Ava was, her heart rate was back up into the 170’s, so I asked the nurse to give her some morphine.  I called an hour later and her heart rate was back down to 140.  So maybe Ava is in pain.    I would like to try to keep her pain free for a day or two to see if we can keep her heart rate down, and just maybe, that will keep the fevers at bay.

If I’m wrong, I would just pray that some source of infection would be found in our poor little Birdy.  She’s been poked so many times that she’s not going to have any blood left and like I said before they just can’t find any infection that would explain her fevers.

But whatever happens, I’m so grateful that our family is back together, and so thankfully that God answers prayers!

Catch-up

I haven’t blogged in a few days,  it’s been busy here, so now I’m grabbing a few minutes to catch up.

So yesterday – Sunday – we dedicated Ava at church and it was so wonderful to be there with her and share a bit of our story.   And we felt really blessed to see all our family and friends who made a special trip to come and support us and we just want to say thank-you again to everyone who came… it meant so much.  And to our church family who hasn’t stopped praying, we are so glad you finally got to see our little Birdy and we so appreciate all your prayers and support as well.

And then Saturday, Ava was 5 months old, amazing!   And as of today she weights 12 lbs 8 ounces!   She’s growing slowly but surely.   And thanks to the fact that I’ve cut all dairy from my diet because of Ava’s cow’s milk protein intolerance, she hardly has any reflux these days.    And even though we would have liked to see Ava get her Glenn surgery this month, I know it’s all in  God’s timing and maybe the longer it takes to get her cath the better the pressures in her lungs will be.

Friday unfortunately, I had the wind taken out of my sails – sort of speak – when I found out that two of the children that had been on 4D – the Cardiac floor at Sick Kids –  the same time as us had passed away.   Their families had also been at the Ronald MacDonald house with us and it’s really tough any time a cardiac child dies.   I think what struck me the hardest is that I watched one of the moms just giving her all trying to help her 2 year old daughter get well,  only to have it not be enough in the end.    And that’s a lesson I need to learn, that with Ava –  or any of my children for that matter – no matter how hard I work,  my best efforts aren’t going to keep anyone here that God has called home.   He already has a plan for each of my kid’s lives just like Psalm 139 says in verse 15 & 16

My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

So I’m not being morbid, I just have to trust God and take each day with Ava and each of my children as a gift… even on the days when they don’t feel like gifts. 🙂

And then Thursday we saw Ava’s paediatrician who is just a lovely person and she was really happy with Ava and her progress, hurrah!   Now she did warn me not to take Ava to malls or anywhere else teaming with infection (hospitals?  haha)  but when I told her I was taking Ava to church on Sunday she said it would be OK.  And we kept Ava out-of-the-way on Sunday and people were careful not to touch her and hopefully that was enough to keep her from catching anything.

So I feel all caught up now… with my blog at least.   Even though it feels like I’ll never be caught up on sleep,  housework or laundry,  at least I can feel caught up in something!

Happy Easter and an upgrade!!!

Happy Easter!  Christ has risen and Jesus is alive in me!  AMEN!

And finally, I have gotten around to updating our blog… Just the 6 of us hasn’t really fit for a while. 🙂

So now we are “6 and a half hearts” and I hope you’ll keep following us on our journey!

God Bless!

 

A Canadian Blue Solution

Sorry I haven’t blogged in a while.  This weather has been so cold and snowy that I just have wanted to sit under an afghan and read novels (not that I have) but still, I  just haven’t felt the motivation.  But tonight as I’m up waiting to feed Ava I though I would jot a few things down.    And I’m happy to say, we are doing good.  It’s surprising what at first seems so daunting, can now seem so  ‘normal’ .  We’re getting into a good grove with Ava and although caring for her is  still intense and time-consuming, we are doing OK.  And she is such  a good baby.    She did have a tough go last weekend and the first of the week – she was so upset and refluxing all the time like crazy – but I finally figured out that her daily dose of baby aspirin was probably hurting her sensitive little tummy, so now she is getting the aspirin after her morning milk and she is doing so much better… praise God.

And talking of prayer, I know that God’s people have been praying because Ava has been nursing again!   In the past couple of days she’s nursed quite a few times a day, which is wonderful.   And she’ still only nursing about 5 minutes at a time, but I’m not concerned with amounts right now, it’s more about her being comfortable and enjoying sucking and orally feeding like I mentioned in my last post.   So thank-you for lifting us up before the Lord, He has heard your prayers!

And I don’t think that I’ve mentioned that April 25th is the date of Ava’s heart catheterization, where they will go into her heart to test the pressure to see if she is ready for her next surgery.  So please pray with us that all will go well and that she will in fact be ready!!

And I’ve also been meaning to show you a pic of our very own IV pole that Jason made us.  The first night we took Ava home we needed a pole to hang her gravity feeds on as we hadn’t gotten an actually IV pole yet.  So Jason ran to the garage and came up with this…

hockeyivpole

Yes, the hockey stick IV pole.  Such a Canadian blue solution.  Don’t you love how men solve problems?   And it’s been great and it was even strong enough for Ava’s feeding pump to be attached to it.    It’s awesome.   Actually last week we Last week we had a real IV pole delivered, but Jason told me if we used it that he wouldn’t talk to me… haha.  Seriously though, I’m too attached to my hockey sticks.

So I’m just thankful that we made it through another day and that Ava looks so amazing and is doing so well, even though she does seem to fighting off a mild cold.      Here is a pic from a few weeks ago sans ng tube – as I had accidentally pulled it out…  my sweet little Birdy.

Ava

And we are off to Toronto again on Tuesday for another appointment with the Single Ventricle  Team at Sick Kids and Ava will get another echo,  but this time I have no fear that they will be keeping us and I’m not packing a single thing, ha!

So thanks again for everyone’s support and prayers, we are truly thankful.

Making Memories…

We had such a wonderful Easter weekend and lots of wonderful memories were made.   We did a lot, so I’ll try to keep it brief…

Friday we did a day-trip to the cottage with friends.  It started by taking the kids out to breakfast (William ate 5 large pieces of french toast) getting to the cottage and then going for a long walk on the beach.  We relaxed for a bit and then went to a great park in Kincardine, took the scenic route back,  had dinner and left with great memories and very tired children. 

Sunday morning the kids woke up and hunted for easter eggs.  See – only the baby bunny comes to our house and just leaves little chocolates indoors – the real Easter egg hunt comes later.   Then we ate our cinnamon buns that we only have on special occasions (if they were a health food I’d eat them everyday) and headed to church for a great resurrection day service.  Then we were off to Grandma and Grandpa’s for the REAL easter egg hunt, where the Easter bunny leaves big coloured eggs all over the yard.   The kids look forward to it every year, and just adore it.    I guess that’s why I’m not too worried that my kids believe in the Easter bunny.  William asked me a few days before Easter, “Mom, what do you think is more important, Jesus dying on the cross or the Easter bunny and chocolates?”  And I replied that Jesus was more important and he replied emphatically, “I think that too!”


Then after eating a wonderful ham and scalloped pototo dinner, we were off to my parents.   We played outside enjoying the unexpected sunshine,  the guys flew a kite and we ate another yummy meal of ham and mashed pototoes with my two younger brother and their familes.   Thankfully we were all hungry again and the food was so good we didn’t mind eating 2 big dinners in one day,  in fact, the  kids loved it!

The boys also got to go for four-wheeler rides after dinner at my brother Dan’s and I could see their grins for miles away.  Sarah got swarmed by the 8 puppies they currently have and just loved it and I didn’t get pictures of any of it!  I apparently have camera issues when I go to my parents.  If I don’t forget to bring my camera I have it and don’t take pictures.   I don’t know why.   Next time I’ll do better.   I did catch aunt Erin reading the girls a book though, with sweet baby Katie.

 

So now we are stuffed with chocolate and memories of a wonderful Easter weekend.  If we could, I would do it all over again!

Cousins Rock…

My kids are very blessed in the cousin department.  They have 9 cousins currently and that’s not even it yet… there are two more on the way coming this May and July.   And my kids love their cousins, in fact, I have to be honest,  when I was teaching Sarah to pray we included Grandma and Grandpa and Oma and Opa and then I combine everyone else into God bless “all our friends and family”… yes, I’m a wimp.    But lately miss Sarah has wanted to pray for everyone and it takes a long time!!!     But I’m not complaining.   It’s so sweet to hear her pray for her cousin Aidan and baby Katie and the baby in aunt Lija’s tummy and the baby in aunt Jenilyn’s tummy and I think she can remember them all, I just help with the aunts and uncles, that’s can be tricky.  

But on to our cousins.   We’re really blessed because all the cousins are all quite close in age with the oldest one 12 and  the youngest just 4 months younger than Sophia.   So when the kids find out that we are seeing any of them they get quite excited.  And this past weekend was great because we saw them all!   On Saturday we celebrated Grandma’s birthday and we saw Aidan and Liam and then on Sunday we celebrated Opa’s birthday on Sunday and saw Ben, Matt, Nate, Rachel, Zack, Katie and Tyler!   What a great weekend!

Here’s Aidan on Saturday with the cutest smile…

And Liam and the kids had a great time playing and then here waiting to blow out Grandma’s candles…

And silly me, I didn’t take my camera on Sunday because I didn’t think I would need it????   I took quite a few pictures with my sister-in-law’s Canon Rebel (which is almost as good as my Nixon) but she’s pregnant with a toddler so I don’t want to bug her about sending me the pics – something tells me she might need her energy for other things.     So instead of all the cute pictures of the kids having a grand ole’ time with their cousins on Sunday, here’s a pic of another cutie…

What can I say?  She’s my baby and she’s cute and I rest my case.  

But I will say it again… the kids love their cousins!  And I love my nieces and nephews… wow, yes, I keep forgetting that I only have two nieces and 7 nephews – but I did mention that there are two babies on the way… maybe we’ll get some more xx’s to even things up with the xy’s.   I don’t think anyone would mind that! 🙂