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.

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Life goes on…

LIfe goes on, and I think that is one of the hardest things I’m having to come to grips with 11 days after we’ve lost Ava.    My whole life has changed, not only in the fact that my baby is gone, but even to the fact that where we live has changed, our family dynamics have changed, what life looks like going forward has changed.   So it’s strange that even with all that change, day-to-day life still goes on like nothing has changed.  You still have to eat, you still sleep, you still interact with everyone.   We went to church yesterday and got together with friends, and even those were normal things, I think they almost hurt me more,  as part of me thinks life shouldn’t be back to normal so soon.  I’m not sure that makes sense.

Grief is an interesting thing.   I may have thought that I would spend my time crying and missing Ava, but most of the time I just go on with this ache inside my heart.  I was thinking today that this ache is like a little grey cloud.   Sometimes the sun shines through and the ache isn’t so bad, and sometime the clouds gather and it actually gets stormy enough that I cry,  but that doesn’t happen very often.    I sometimes wish that I could cry more.  Maybe because crying  is an opportunity to feel real grief,  because the ache I carry around more often than not just makes me feel a bit numb.     

But I know that grieving is important.  One of my favourite parenting books describes grief this way, “Grief is the emotional tool God placed in our hearts to enable us to release things we value.”  (Parenting is Heart Work, Turanksy and Miller).   Isn’t that good?    And it’s hard to let go, but I don’t think there is any rush for us to get through this grieving process.    It’s actually very interesting hear the kids talk about Ava.   We’ve stopped by the cemetery to visit’s Ava’s grave twice already since the funeral and Sophia who is 4 is quite confused about where Ava is…  tonight she said that she thought Heaven was in the ground.   And even though we’ve been trying to explain that Ava’s spirit has left her body, she can’t understand the concept, and is now just worried about dying and she doesn’t want to go to heaven, which now that I understand what she is thinking is really not all that surprising. 🙂

Our boys were sad tonight because Ava had never been to the cottage and I’m a little worried about Sarah because she doesn’t seem to want to talk about it anymore.   I hope that her heart stays soft and she can still talk about Ava and what she misses.  Jay and I will definitely be praying for her.

So we keep moving forward day by day.  I’m so incredibly blessed to have the family that I do have, for an incredible husband who is so patient with me and is filling in all the gaps as I keep dropping the ball.  And for my kids, who have been so gracious through the whole Ava journey, but now are just happy to have me back.

So life goes on.  And it’s hard, but it’s OK.  And praise God that as life goes on,  He won’t make us walk alone, but will be comforting us and guiding us each and every day.

One week ago…

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

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

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

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

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

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

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

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

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

One week ago today.

How can we ever say…

Thank you.

Thank-you to everyone for your heartfelt support and generosity.  For taking the time to be with us the past few days .  For praying without ceasing for us.  And for those of you who could come, for sharing in our day yesterday as we remembered our sweet Birdy.

Our Pastor Norm (from Harvest London) did such an incredible job at Ava’s service explaining why we have hope, and in that hope is the knowledge that Ava is more alive in heaven than we are right now.  In fact, she is ahead of us as she is now fully aware of God’s glory.  Isn’t that incredible?    That truth so encouraged my heart.

I know where Ava really is, but it was really really hard leaving her precious little body at the cemetery yesterday.   I needed to give her one more kiss, and the crazy mother in me just wanted to grab her and take her home.   I didn’t (thank goodness!) and through God’s grace alone I walked away.   We can say that God was good to us yesterday and proved once again that He is faithful.

I would be very wrong to not thank Ashley who did so much for us, and everyone else from Harvest who made food and helped with worship and setup and everything.  We are so blessed to be part of the body of Christ.

And too everyone who travelled huge distances to come and support us and pay their respects, how can we ever tell you how much it meant to us that you all made such an effort to come?   We were actually just blown away by all of you that did come and we just thank you from the bottom of our hearts for loving Ava and praying for her and supporting our family.

I am no techie… but I put the power-point presentation that we showed of Ava’s life on YouTube… the resolution isn’t that great and hopefully someday we can fix that.. but for now I wanted to share it with you all.   If the video doesn’t show up below, you can click on this link…. http://www.youtube.com/watch?v=0mmA2Q0AI5w

Oh – and if the quality is poor – you can change the settings by clicking on the settings icon and make it better.

(updated video August 24)

Remembering Ava

We wanted to invite you all to remember Ava with us this Tuesday, August 20th at 1:00 pm held at North Park Community Church located at 1510 Fanshawe Park Rd E in London Ontario.     Our  Pastor Norm from Harvest Bible Chapel will be officiating, with Pastor Leo there as well.   Afterwards we will be having a reception which everyone is invited too.

And I wanted to mention that this will be a family friendly service as our four other children will be attending so yours can come too.  And please don’t wear black, or even a suit and a tie unless you really want too, I mean it.

Tomorrow we will be receiving people at the same location between 2-4 and 7-9 and would love to see you there.

Thanks once again for all your out-pouring of love and support, we feel very blessed in this very sad time.

I’m looking forward to everyone coming together to remember sweet Ava.

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Posted in Ava

Home

We are home, and it feels strange.  I think it’s maybe like how a solder feels after being away on the battle-ground, and then finds himself home and the battle is over.   We are grieving the loss our sweet daughter and we miss her so much.  But on the other hand, there is so much relief that she is finally at peace and isn’t hurting anymore.   It’s grief mixed with relief.   And it all comes in waves.  One minute we are fine and dealing with practical issues, and then the next minute we are swamped with feelings of sadness.  I didn’t want to go to bed last night because I knew that once I actually stopped being busy I would probably just cry and cry.  And I did.    But knowing what she was going through in the last days of her life helps comfort me knowing that she is more alive in heaven right now then we are here down on earth.  She is free from her body of death and has gone into eternal light.

And I’m happy to report that the kids are doing good.  One of the doctor’s from the PACT team told us that children grieve in puddles and adults grieve in rivers.  And I liked that and it’s proving to be true.    The kids hop in and out of their sadness, sad one minute and happy the next, which really isn’t unlike Jason and I, I just think we feel it deeper.

But oh I miss my baby!  What I wouldn’t give to have her back wtih us!   But in my heart I know that she had to go.   The doctors and nurses were very honest with me which we appreciated so much, and I’m so glad we could let Ava go before her suffering got worse.

And we just wanted to thank everyone again for all the kindness showed to us.  For Jason’s parents who came down to see Ava before she died, for my parents who came and supported us and cared for our kids during her death.  For the nurses and doctors and staff from our ward 4D at Sick Kids who showed us so much kindness and compassion… they really do feel like my family now.  We want to thank our church family for praying and supporting us, for my friend’s who cleaned my house this week, for friends who brought food and flowers to welcome us home.   And for all you readers who have left us comments just letting us know that you are here for us.

Tomorrow I will give you some info about the funeral, but I have to go now because I am too tired to think.  But happy (mostly) to be at home, even if it’s without our Birdy.

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Flown away

Our sweet little Birdy has flown to Jesus. She died peacefully in our arms tonight and is finally free from all the pain and suffering that was hers.

Our hearts are hurting and rejoicing at the same time and through all of this we feel so blessed for every minute we had with Ava.

I’ll share her verse one more time…

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

Here in the power of Christ…

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

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

Ava is dying.

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

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

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

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

His power is amazing, His peace is beyond comprehension.

Amen.

Thank-you

Thank-you to everyone for praying, we so appreciate your prayers and kind words of encouragement.

Praise God they decided this morning that Ava didn’t need to start the second heart drug after all!       A few days ago I mentioned that we were starting to find blood in Ava’s diaper.  We thought that perhaps it was just her blood thinner levels being too high, but they came back normal.  So the doctor and I discussed it and we decided that at this point we weren’t going to run more tests to try to find out what was causing it, because we weren’t likely going to treat it.    Usually treating bowel stuff would mean that Ava would have to go without food, she would have to start being fed intravenously and she would have to go on antibiotics… and all these things would be so hard on her.

So not only did she have blood in her diaper,  Ava has been doing some retching for the past couple of days and yesterday she even vomited.   Feeding intolerance can definitely be caused by worsening heart failure, so that plus the fact that Ava’s kidney’s are having a harder and harder time moving her fluid, made the doctors concerned enough to think that they needed to introduce the other heart med.

However, yesterday we started wondering if maybe her feeds might be causing some of the problems.  So we went down on the concentration of her milk yesterday afternoon, and praise God there has been no more retching or vomiting or blood!     So maybe all of the digestive issues were being caused by milk that was too rich for her tummy, or maybe it was something else that we’ll never know about.    But since Ava was doing better with her feeds this morning they felt OK to hold off on starting Ava on the dobutamine.   They are going to save that in their back pocket for when they really need it.

So that was great news.   But Ava still didn’t have a great day.   Her hands and feet were still really blue today and she was tired and even though they keep trying to make her pee, her fluid levels are creeping up again.    My mom came up today and Ava smiled for Oma, but just didn’t really have the strength to do anything but sleep today and couldn’t be off her CPAP for too long before she started looking like a fish out of water, she just couldn’t breath without it.

My goodness I’ve shed so many tears lately!    This is one crazy life and I don’t know if I’m coming or going or if I feel happy or sad.

So I’m going to take a few days off.  My parents have graciously offered to come and stay in Toronto so they can be here for Ava.  And I am going to leave her tomorrow and go and spend a few days with my husband and my other four children, who haven’t seen a lot of their mom lately.

It’s hard to leave, but the nurses and doctor’s and friends have been encouraging me to do so.  And it will be wonderful have some time away from this situation to gain some perspective, and hopefully return in a few days with a renewed sense of strength and purpose.

So if you don’t hear from me, don’t fret.  If anything major happens I will be sure to let you know, but if things stay relatively the same with Ava I will write again towards the end of the week.

Thanks so much for your understanding, and again thank-you for your prayers, God is listening!

Hard to hear…

This morning when rounds came they were still being led by doctor who the head of the heart transplant program, and she knows her stuff.   She was the one who decided earlier this week that Ava should get the heavier diuretics twice a week – but since Ava’s kidney’s aren’t responding that well anymore, she now needs to receive diuretics every other day.   Anyway…

While they were talking on rounds, they decided that since it’s clear that Ava is not doing well,  they are going to try to start her on another heart drug tomorrow – Dobutamine.   It’s like Milrinone,  and if it works, the dr said we might be able to buy Ava another 4-6 weeks waiting time for a heart.    This news kinda broke my heart.     Jason and I know Ava isn’t doing well, we know her little heart is just getting worse and everyday and I can see the effect of that… but hearing an actually time-line was hard.

And it doesn’t mean the doctor knows for sure that’s all the time she has left,  and we understand that.  But I think they are just looking at Ava’s downward trend even in the past few weeks, and since it has been going downhill pretty rapidly, I think it’s fair for them to assume that at some point you have to reach the bottom.

If God is going to send us a new heart, we need it to come fast.   But in saying that, our doctor also told me today that if Ava does get a new heart now, it will likely be a slow recovery for her as her health has deteriorated so much.     Even today she is still having blood in her diaper, but they have decided not to treat it, or even find out what the problem is, as the cure would probably be harder on her than the disease.

So we are just asking for your prayers once again as we wait and trust for God’s perfect plan.

My friend Christa posted this quote on Pinterest, and so I wrote it out and pinned this up at the hospital today in Ava’s room…

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So even though the news was hard to hear today – we know it’s still not the end of the story for Ava.

God still has a plan and He is faithful and sure.