Where I was…

Lately I’ve been feeling kinda unsettled.  I think because on one hand I’m happy to be home and looking forward to preparing for Christmas with Jason and the kids.  But on the other side, I’m very aware of where we were last year and how we were still waiting for Birdy with the uncertainty of what was going to be ahead.   And I do feel like I want to reconnect with where I was, maybe just to make sense of it all?    So I decided to go back and read my blog from last year.  And I found this post that I wrote a year ago today… and I ended up encouraging myself… isn’t God good?   What I read was such evidence to me of the grace of God that was holding our hearts then, and is still holding us know.  And the best part… a year later I can say that every single word is true.   Having Ava, losing Ava was such an incredible and rewarding thing that we will forever praise God for bringing her into our lives and for the work He did in our lives through the whole process.

So I decided to repost what I wrote, so here it is.   It was entitled “Ruin my Life“….

Oh these crazy followers of Jesus Christ, and the crazy songs that they choose to sing!

Why would anyone sing a song asking God to ruin their life?  Talk about very scary stuff.    And to be honest when we first started singing this song at church I was a little bothered, thinking that I’m not singing that,  I like my life just how I like it, thank-you!

But then we got pregnant with number 5 – that huge surprise.  And we sang the song again at church on that first Sunday after and I cried.  NOT that I was thinking that God was in the process of ruining my life per-see… but that His plans were clearly not my plans.. here’s what we sang…

Woe to me I am unclean
A sinner found in Your presence
I see you seated on Your throne
Exalted, Your Glory surrounds You

And the plans that I have made, fail to compare, when I see your glory…

Ruin my life  – the plans I have made
Ruin desires for my own selfish gain
Destroy the idols that have taken Your place
‘Till its You alone I live for, 
You alone I live for.

Holy Holy is the Lord Almighty 
Holy is the Lord! 

Holy Holy is the Lord Almighty 
Holy is the Lord!   ( Jeff Johnson)

And so it’s kinda become Jason and my theme song through this whole pregnancy situation if you will.    We do now feel in a way like life as we know it has been ruined, I know whatever the outcome of this pregnancy is, we will have been changed forever.   But the amazing part it, we will have been changed for the better.

God is taking hold of our lives.   And even though I cling and I fight and I cry and occasionally think about how my life would look if none of this happened,  I can see that striping all the external stuff away, letting go of all my plans of how I thought things would turn out,  and just focusing on God and doing my best to be obedient and having faith in Him is so incredibly beautiful and rewarding.

There is an amazing sense of peace that God has given me as my time gets closer (thanks for praying everyone!) and I know that any strength I have has come from him.     And we can know for certain that this is His plan and His alone because He has taken such incredible care of us through the past months,  which brings me so much joy because I can know that I don’t have to worry about one minute of one day going forward, He is going before us and will take care of us.

And in this world where the biggest thing seems to be control…where we feel like we always need to be in control…  just know it’s all a sham.  We have so little control.    But don’t despair,   when God starts to move and plans and lives start to be ruined,  it doesn’t have to be negative, just cling to Him and move with him and it can truly be the best thing that ever happened to you.

Amen.

512 Nights…

Last Saturday I got this text from my friend Tanya, Aleeda’s mom….  “512 nights at Ronald MacDonald and now we are all home!”    It just blew me away that it had been that long that they had lived in Toronto,  and seeing those numbers was a bit shocking.   Our family was only away for 6 months and that felt like forever, so times that by 3 and then you can see how Tanya would say that coming home really isn’t coming back to “normal”… it’s kinda like coming back to a completely new life again.    And even though Tanya and Brian’s journey has been far from easy… far far far from easy… I love seeing how their faith in God has given them incredible strength to face all the challenges and hurdles of having a  baby with hypo-plastic left heart who needed a heart transplant, and how through it all they have stayed sane and stayed positive.

Now the journey is still far from over.  Aleeda is still being fed through her g-tube and is on quite a few meds, so she and her baby sister are going to keep Tanya very busy, but I know that God chose wisely when He gave Aleeda to Tanya and Brian and I hope that someday Tanya finds a way to share her story for everyone.

The girls and  I actually went and saw them today – we are so fortunate that home for them is only 40 minutes from here… hurrah!  Sarah had said that she just wanted to see Aleeda smile and she got her wish…

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Doesn’t Aleeda look amazing?    Sarah also spent alot of time holding the baby like she had been doing it all her life…

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But to be honest, seeing pictures of Sarah holding babies kinda makes Jay and I sad.  There are so many pictures of Sarah holding Ava and we just wish that it was still Ava that she was holding… sigh.

While we are on the topic of Sarah… Jason and I attended a class last week to learn more about using an Insulin pump as a method to control diabetes.  We learned more about how the pump works and they also talked about how we can begin to start the process to get Sarah pumping if that is something we want to do.   Here is a handy dandy illustration of what a pump looks like…

isulin pump

Basically the pump is a little digital device that you wear on your belt, which pumps insulin through tubing that is attached to you.   Having a pump would be great for Sarah because it would allow her to eat what she wants when she wants, just like the rest of us.   But the downside of that is that you are kinda married to the pump in the way that it’s always there… it never leaves your side, literally. 🙂

Right now we manage Sarah by giving her injections of insulin, which is restricting because she has to eat at scheduled times and has to stick to a strict set amount of carbohydrates for each meal – but in between snacks and meals we don’t really have to think about her diabetes.    So I guess it’s one of those things where you have to weigh the pros and cons and figure out what works the best for you and your family.   I’m fairly certain that just because of the flexibility we will be perusing the pump, but that means now we have to figure out which pump to get!   So if anyone has any suggestion for us, we’ll take them!

Other than that, it’s just business as usual around here.  I am pleased to report that with some help from my friend Rachel,  I finally manged to tackle the room in our basement that held a lot of our belonging we had brought home from Toronto.   I thought I couldn’t sort it all because some of the stuff was Ava’s and I was pretty sure it would make me sad.  As it turns out it didn’t make me sad, and I realize now it wasn’t Ava’s stuff that was bothering me, it was just the mess and chaos that was bothering me!   I do feel like I am close to whipping this house back into shape and getting things all organized so that it can be functional for us.  But it’s taken a long time because life is busy here with 4 children plus diabetes.

Today is actually 3 months since Ava died.  Three months already.  And then in a few weeks it would have been Ava’s first birthday…. December 4…. Ava Day. 🙂   We haven’t quite figured out how we want to celebrate it, other than the kids want to decorate our house with birds and probably eat cake.  But I hope that as part of ‘Ava Day’ we can find a way to reach out to other families who are struggling with a baby in the hospital.   We will see what happens and I will keep you posted.

And we just wanted to thank people once again for your continued prayers and support.  Even after three months we still miss Ava like crazy, but are truly thankful to be home and I think Tanya would say the same thing, especially after 512 nights away.

A cowgirl and a cupcake

Thank goodness last week’s festivities are over!   We had alot of fun as a neighborhood again this year, getting together to eat and carve our pumpkins the night before the big day.   We produced such works of art as this…

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and this, except it wasn’t so fuzzy in real life…

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And the next night we enjoyed having a cowgirl and a cupcake in the house….

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Although they did come back a little wet and bedraggled thanks to the rain.  However Sophia has never been one to put herself out for anything – even candy –  so she didn’t last that long and was very happy with her tiny haul.  Sarah got a bit more candy, and the boys (dressed up in Star wars characters) ended up getting a ton… but soon problems arose.   Sarah was sneaking candy.  And who can blame her?  I know it’s wrong and we didn’t like it,  but she was a lover of candy before her diabetes, so I would have rocks in my head if I believed that this issue was going to get better after her diagnosis.   And it was frustrating to have her sugar’s all over the place, even though we were trying hard to allow her treats within her target carb limits.

So on Saturday afternoon I traded the girls a new little stuffy for their candy… yahoo,  what a coup!  But there was still the boy’s candy and they were away visiting my parents for the weekend.  But I got them today with Lego sets that we had left over from last Christmas – and now I don’t have to worry about Sarah finding candy to sneak.  The boys got to keep a tiny bit that they promised to hide – they better!  But at least the bulk of the candy is gone and that makes me happy.    Super happy for us and for Sarah and trying to keep her healthy.

On the weekend, we got to enjoy a different kind of sweetness…. a precious new baby courtesy of my younger brother and his wife.

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We all enjoyed holding her and getting our ‘baby fix’.    I think sometimes people worry about me around babies, but the truth is that I don’t want other people’s baby’s, I want my own baby back!!   And I can hardly begrudge anyone a healthy baby, when I had four healthy babies before Ava.  So I just enjoy getting snuggles and then I enjoy giving baby’s back to their parents when they start to cry.  🙂

And speaking of our baby, Ava would have been 11 months today.   It’s hard to believe, and it’s kinda strange actually.  And I’m not sure how this is supposed to work, if she is forever going to stay a baby in my mind, or if I’m supposed to ‘allow’ her to grow up.  But whatever it is,  we miss her and wish that she was going to be with us to celebrate her birthday next month.

When I was in Toronto a few weeks ago they gave me Ava’s final bravery bead… a bereavement bead, a  little butterfly.

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I probably mentioned bravery beads way back, but at Sick Kids a child can collect ‘Bravery Beads‘ where they get a bead for every blood draw or test or poke or clinic visit.  It’s a neat program and although Ava never understood her beads, I did and it’s just such a testimony to what she went through in her short life.

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And I didn’t even do one for one on the beads… I would do one blood work bead for every 10 she got, but still, the meaning is quite clear.  Our strand was quite humble compared to other warriors at the hospital, but I know that I will treasure them forever.  And now the strand is complete and to be honest, for all their colour and cheerfulness, there is quite a bit of pain in that string.  And I praise God that Ava is free of all that pain and knows no more pokes or tests in her heavenly home.

Revelation 21:4  He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

Praise God, what a hope we have.

Amen