What we are clinging too…

Out dear sweet little Ava had been gone now for almost 6 weeks…. it seems so crazy because in some ways it feels longer than that, but then it seems just like yesterday we were living in Toronto and she was still with us.

Since we are now officially back into the swing of things, I’ve been trying to get our house back in order while the kids are at school, and I fear I’ve met my Waterloo.   It’s an over-whelming job and I don’t feel like I’m making very much headway, but yesterday I turned my attention to the downstairs bedroom which has ended up being a dumping ground for all of our stuff from Toronto, including Ava’s stuff from the hospital.   Yesterday I started to gather Ava’s things together and put them in a bin, ready for when they will  eventually  go into a memory box Jason is going to make for us.

Since Jason and his dad did such an amazing job making Ava’s casket, he is going to make a smaller version to use as our ‘Ava’ memory box.   I do promise however that the memory box will look more like a chest, and less like a casket.  🙂   We do plan on decorating it the same, and since I never did show pictures of the casket, I will now.   Because it was such a labour of love, it doesn’t make me sad to look at it, I just see a father’s (and grandfather’s) love….

Avacasket

The kids hand-prints were on it, and we had written Ava’s verse on the top…

topavacasket

The memory box will be such a wonderful reminder of our little Birdy – and we want the kids to be able to open it and look at her things whenever they want.  I can’t wait.

But as you can imagine, sorting through Ava’s stuff yesterday made me rather sad, and so I guess it wasn’t a surprise that later in the day I ended up at her grave-site.  I shed lots of tears and mourned for her and just missed her like crazy.

But through the pain and the sadness, here is what we are clinging too…

We are clinging to the knowledge that Ava’s life turned out exactly as it was supposed to be.    Isn’t that a cool thought?   That the 255 days that she lived her on earth was the exact number of days she was supposed to live.   That God formed her and her heart exactly how He wanted.  That He had a purpose for her life and a plan formed for her before she was even born.

I love Psalm 139 and I always have.   And here are the words we love,  verses 13 – 16…

For you formed my inward parts;
    you knitted me together in my mother’s womb.
 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
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.

And it brings us so much comfort… especially in the fact that we don’t have to play the “If only” or “what if” game. “If only a heart had come in”… or “What if Ava was born healthy”.     This was how it was supposed to be, right from the beginning.     And even though Ava leaving us wasn’t at all in my plan, it was in God’s plan.   And even though I can’t see the plan, I can trust Him.   He’s sovereign, I’m not.

I just finished reading the book “Safe in the arms of God” by John MacArthur and it was another huge source of encouragement, just like our Pastor’s Norm’s sermon at Ava’s funeral.   Here’s a tidbit from the book…

“We ought to be greatly comforted by the knowledge that this little one is in heaven, in the presence of Christ, enjoying all the wonders of that glorious place, free from all the troubles of this earth, dwelling in perfect bliss, surrounded by perfect love, and loving and worshiping Christ perfectly in return.”

It’s such a wonderful thought.   And like another grieving heart mom said, when we think about where our child isn’t, it’s sad.  But when we think about where they are, there is joy.

And the best part is, is that while Jason and I are clinging to this hope, God is working on healing our hearts.  And we’ve received so much encouragement and love from friends and family that we know God still is caring for us and loving us.   And we also know that He will help us go forward and live our lives with renewed joy,  especially in our hope of eternal life and meeting our sweet baby Ava again someday.

Amen.

Advertisements

Our dear brave girl

Finally I’m going to update you on Sarah and her diabetes clinic… finally!   As you can see I haven’t been blogging that much, sorry about that.   Things have been busy, but not terribly exciting.   It is a little strange trying to get reacquainted with regular life.    In all honesty, I guess I’m finding ‘normal’ living a bit uninspiring.    The kids are all in school and yes I have a house that needs reorganizing etc, but after the stress and craziness of the life we were living,  life now seems a little flat.    But I’m not complaining, however I am side-tracking.  Back to our story.

So Sarah, our dear brave little diabetes girl.    Jason and I took Sarah to the diabetes clinic at the Children’s Hospital last week, where she goes every three months to see the endocrinologist.  She gets weighed and measured and they sit and have a chat with us about how things are going, and they also check her A1C levels.    Now I just had to Google ‘A1C‘ to make sure I really understood what it is all about, and basically it is a blood test that shows your average blood sugar over the past three months in percentage values.   Even though the Dr and nurses can see your daily  blood glucose numbers (that you’ve recorded faithfully in a little book) the A1C gives a nice over-all picture of how your blood sugar has been in the past three months.

In Sarah’s case – her result was 6% and that is perfect, and maybe actually be in the range of you and I.    It’s really just a testament of how well Jason has controlled Sarah’s blood sugar (thank you Diabetes Dictator! 🙂 ) and it’s a relief because the better her sugar is controlled, the better her health will be in the long run.   Now, we are being helped a little by the fact that Sarah is still in the honeymoon period with her diabetes.   When you have type 1 diabetes, your body is actually destroying your beta cells that make insulin, and that happens over a period of time.  Sarah clearly has a few of her beta cells left and so is able to still make a tiny bit of insulin, and it helps a tiny bit with controlling her blood sugar.   

We also found out at the clinic that we can start down the road of getting an insulin pump for Sarah – yahoo!   In Ontario, if you have had diabetes for a year and have kept your numbers under control as based on three good A1C numbers, the government will fund an insulin pump for you.   A pump will be a whole new ball game for us, because it will replace Sarah’s needles and instead will attach directly to her and constantly give her a steady trickle of insulin.    When she eats meals, you tell it how many carbs you have eaten, and it will then give you a bolus dose of insulin to help with your meal.   I’m sure a pump will change everything for us, in good and bad ways, but I’m ready for the flexibility it will offer Sarah and our family.  The only downside is that we have to wait a while, and likely won’t be able to get one until the new year.   But as we are currently managing just fine with how things are, a few more months won’t hurt us.

And Sarah is doing really well with everything… she is a trouper and one tough little cookie.   When she was first diagnosed she often didn’t want her needles and would make a stink about getting them, but now it’s just life.     Once in a while they hurt and she cries, but generally it’s a non-issue.    She is even good with food and that is the hard part.   She can only eat at certain times of day and can only have a specific number of carbohydrates  at each meal and it’s limiting, but she seems to have accepted it.  And she knows what she can’t have and there are times when others are eating things she can’t and that’s not nice,  and I feel bad for her, but if she gets upset I remind her that eventually she will get the pump!    She does all her finger pokes by herself to check her blood glucose levels 4 times a day and she never makes a fuss about doing those… I think she’s proud of the fact that she can do so much independently  and so she should be.

Sarah

Sometimes I look at her and I feel sad because she seems so much older than 6 years old.   She was forced to grow up so much this year with all the happened and I know it changed her.   She was diagnosed with a life changing disease, and had a very sick baby sister all at the same time.   And she loved Ava so much and then had to lose her.  It makes my tender mother’s heart just want to break for her.   But then again I don’t know what God has in store for her, or how He is going to use this to mold and shape her.  I’m glad God knows best because if it was left up to me I would shelter my kids from every negative thing in this world,  but then they wouldn’t have the opportunity to grow and be strengthened.   God has a plan for her just like He had for Ava and for all of us, and even though it’s hard to see your child with a disease that won’t go away,  I know I can trust Him.  And I do.  Hasn’t He proved Himself faithful over and over and over again?

So here is to our dear brave Sarah – such a monkey who is so strong but can also be so sweet.    We are truly thankful that everything is going well with her and that she is healthy and strong and we just praise God that she is in our lives.

Friends and Birdys

This week is over!   And it’s been a good week – but a busy week and I’m glad it’s the weekend.     The kids have a full week of school under their belt and they all did pretty well.   Sophia loved school on Monday, but cried a few times on Tuesday.  Wednesday morning I had to put her crying on the bus, but I didn’t feel good about it, so at 9:30 am I drove to the school to see how she was.  My plan was that if she was happily playing that I would just turn around and go home.  But her class was still outside and I could see that she was holding her teacher’s hand and when she saw me I could see that she had been crying, so she came home for the day.

When I asked her why she was crying  Sophia said that water kept getting in to her eyes and making her cry…. you know the irritating water that finds itself in your eyes. 🙂   I told her that the water was probably her tears, but she was pretty adamant that it was just the water… and missing mommy.   If things had been different for us, I honestly think that Sophia would have gone to school happily this year and not looked back.  But this year was different and Sophia clearly has some anxiety and separation issues and I don’t see any reason to push her.  I know she will get comfortable eventually, but for now we are just happy to let her take her time.   This morning when she didn’t want to go to school we told that today was the last day of the week and then she would get 2 days off for the weekend.   And her response was, “Two days?  Not eight?”   No, not eight Sophia, little turkey.

So back to our busy week –  Tuesday, Jason and I had a wonderful day in Toronto.  It was so good to go back and be in the place where we spent most of our time with Ava.  And it’s funny how things can change in a year… last year at this time we were making day trips to Toronto for Ava’s echocardiograms and my high-risk pregnancy clinic visits and we didn’t know a soul.  And now when we go it’s like we are going to visit our large extended family.

Jason and I weren’t sure how we would react going back up to the 4th floor at Sick Kids, I hadn’t been up there since the day after Ava died.   But but when I stepped off the elevator so many memories of Ava flooded in that I started to cry.   Thankfully before we even made it to the Ward we started meeting people we knew and after getting some hugs and starting talking I couldn’t cry anymore. 🙂  Can I just say how much I love our 4D nurses?   And it was so cool that all the nurses we had the last few day of Ava’s life were there on Tuesday and it was so good to see them again.   They gave such love to Ava and so much support to Jason those last days that they will always be in my heart.    In fact, I feel like all the staff of 4D have become part of our family and we are so blessed to have them in our lives.  And they make me laugh, and they helped keep me sane through those tough times with Ava, so I will be going back to visit them for a long long time.

We also were able to spend time with Tanya and baby Britton and we saw Aleeda!  Oh sweet Aleeda.  She looks amazing and her hair has grown a ton since her transplant and she has grown too – but she is still tired and still isn’t tolerating her feeds and so she is still in the hospital.   Please keep her in your prayers, and pray for her parents Tanya and Brian too as they just want to see progress for Aleeda so that they can see home in their future.  You can imagine they aren’t looking forward to spending their second Christmas in the hospital, and it’s very very tough right now to not see huge improvements after Aleeda’s  heart transplant.  But I know that they know that God has a plan for Aleeda and their lives, and they will continue to remain faithful no matter how hard it gets.

We also went back to our other home-away-from-home…  the Ronald MacDonald House.  And we saw the staff again and met with friends, and it was wonderful to reconnect .  And it’s strange, because we lived there for so long that you might think being back there would feel weird, but it doesn’t.   It just felt very familiar, and I guess it felt just like being home.   Our home away from home.

And then we were back at our real home with our kids and to make the week more interesting we had Sarah’s diabetes clinic Thursday morning.  She had to go to clinic every three months to make sure everything is OK, and I’m happy to say that she is doing great and I think I will give it her own blog post, so stay tuned. 🙂

Otherwise, we are doing OK.   We all have times where our hearts just ache and I don’t think that will ever go away, but we have each other for comfort and I praise God for our family.    And our friends.  Two of my dear friends brought this too my door yesterday….

DSC_0428

A sweet birdy necklace for me to wear to always remember my sweet little Birdy.    And it has five leaves to represent our five children and even looking at it now makes me teary.  It is a beautiful gift.

Which reminds me of the first verse I ever learned… James 1:17   Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.

We know that God is the giver of every good gift and once again, even in this busy week – we’ve been blessed.

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.

DSC_0406

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!