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.

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4 thoughts on “512 Nights…

  1. we remember you always just wanted to share with you the mom will be induced tomorrow on my son’s birthday at sick kids tomorrow they are expecting there 6 and he is the son of the mp of Chatham kent Good morning everyone!

    This is prayer request sent out on behalf of/ with permission of Dave & Katy Van Kesteren: They are a wonderful family who is part of our homeschool community.

    Katy is expecting their 6th child in just a few weeks but at the advice of a midwife went to have an ultrasound to make sure the baby’s head was down. During that ultrasound, something abnormal was found so Katy was then sent to London for another ultrasound, yesterday.
    They discovered that the baby has a very rare disease ( 1in 100,000) called Vein of Galen. It is a condition in the brain, in the blood vessels, where a blood vessel expands and blood pools and there isn’t proper circulation. The baby’s vitals are good but there is only a 50/50 chance of survival. Katy will have to have the baby in Toronto where there is a specialty place for those with this condition.
    Please keep Katy & Dave in your prayers as they go through this difficult time while still looking after the other 5.
    I will keep you posted as to how they are doing.

  2. I believe the touching of hearts of others will be huge on December 4th *Ava Day* Our Family continue to lift you in prayer!! I continue to be blessed by every word you type. HE delights in your family sooooooo much.

  3. I, too, was thrilled to see that Tania, Aleeda, and Britton were able to come home! Tania used to live across the road from us and was one of our trustworthy babysitters!
    I hope that you’re able to find a meaningful way to celebrate Ava’s birthday. For our KaraLynn’s birthday we bring a little gift to the cemetary, release balloons, go out to eat as a family and of course, enjoy some cake! We also fill shoesboxes for Samaritan’s Purse in her honour and in the past have bought a few small gifts that we know she would enjoy and then we donate them to a women’s shelter or other worthy cause.
    I know we’ve never met but you remain on my heart and in my prayers. And you will remain there over the next month as you remember Ava’s birthday and celebrate Christ’s birth – which will be difficult times for you all.

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