Half of a decade

Five whole years ago, this little girl joined our family…

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Yes, it’s true, at the end of May Sophia turned 5!     And over this winter she made the final transformation from little one to little girl.  Jason and I are almost sad that our baby Sophia has completely disappeared and been replaced by our little girl Sophie.

This little Sophie who loves all things pretty and would wear a ‘beautiful dress’ every day if she could.  She hates cleaning up with a passion, but can play with any child of any age or gender and have a great time.    She has the most wonderful put-on baby voice that any parent would be proud their child possessed, but is also capable of  intelligent thought and we’ve enjoyed many conversation with her over the past while.

She is the perfect youngest child and her siblings all love her except when she’s driving them crazy, and in short she’s a joy and a gift from God and we are so blessed to have her in our lives.

Happy 5th Birthday Sophie!

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Psalm 127:3  Behold, children are a heritage from the Lord, the fruit of the womb a reward.

 

 

 

 

Toronto

One of my regrets that I have about the time I had with Ava is that I didn’t write about her in my personal journal.  I just didn’t.  I don’t know why.   Looking back I see that I just did once when I wrote out her birth story - maybe because I did that for all my other children and I didn’t want to exclude her.   But I didn’t write the kind of things that I wished I had written about… things like how it felt to hold her, or touch her soft curly hair, or how I like to gaze at her while she was sleeping.  It makes me so sad that I missed doing that.  I could do it now of course but I want to go back and read about the thoughts I had when she was here and alive…. oh I’m so mad at myself!!!       But somehow through those times even when I couldn’t write personally, God granted me the ability to blog and write publicly.  And I praise God that I have my blog, but it can’t replace my journal and only God knows why I never could or thought to write.

But now that Ava’s gone, I feel the opposite.  All I want to do is write in my personal journal and I can hardly bring myself to blog.   I think a part of that is that maybe grief is more personal and can’t all be shared.   And I know a bigger part is that I’ve now judged my blog to be unworthy… I feel it’s just a glimmer of what it once was and now it’s boring.   Blogging about a journey you are undergoing with a sick child is nothing compared to some occasional thoughts of a busy mom.    And I worry that if I keep on talking about Ava it’s eventually just going to sound like whining… and no one wants to read my whining, not even me. :)

So the question is… do I continue to blog and just wait out this non-writing period and hope that inspiration will strike again?   Or do I just can it.  Be done with the blog and  say that it ran its course and it’s over.

Big big question.

While I’m pondering that big question, I will tell you about our trip to Toronto last weekend.  :)

We had always planned to take the kids back to Toronto so they could go back and visit the Ronald MacDonald House and SicksKids.  And then it just so happened that we were invited to a Remembrance Day hosted by the Sick Kids’s PACT team.  Erik had also been part of a research study last summer at SickKids.  It was a study of children who have siblings who are palliative, and the researcher had called this spring to ask if Erik would complete the study with another interview.   Erik surprisingly agreed to go and do it, so we needed to book a time for that as well.  So then it just made sense to pack it all into one weekend away.

Oh – and also fit in a trip to the CN tower.   We had been given tickets last year when Ava was sick and when we didn’t get a chance to use them before she died, but we knew it would be special to do it on a trip back.    And the kids really enjoyed going to the tower… even though we went in the rain…

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But it managed to clear up a bit when we were up and we could still quite far, and it was fun to find places we recognized and watch the Porter jets take off from Toronto island.

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The kids have been able to do so many fun things in Toronto through our Ava journey that I’m glad that many of their associations with her are of good things.   It’s really cool that living in Toronto was very much a positive experience for them.

And visiting SickKids was really good too.   Erik did a great job at his interview.  Last time he told me he answered a lot of the interviewer’s questions with “I don’t know”, so this time he tried to be more creative and say things like “I’m not sure about that” or “I’ll have to think about that”… he’s so sweet.    And it was nice to poke around SickKids and find some familiar faces to say hello too.  It just feels like home when we are there, and that’s where most of our Ava memories are as well.  Some of them are sad, but some are happy too, so I just go with it.  I know that Jason found it emotional being back, but the kids didn’t have any of those worries and just enjoyed doing some of their favourite things like going to play in Marnie’s lounge and getting timbits from Tim Horton’s.

We also really enjoyed going back to the Ronald MacDonald House.   Jason and the kids spent so much time there that I know that they really miss it – the kids kept saying this winter that they wished they were back there.   The timing last weekend must have been God’s timing because our time in Toronto over-lapped by a few hours with good friends of ours from Sudbury.   They had been in Toronto that week for appointments for their daughter who is in remission from leukemia.   We were able to visit them at the Ronald MacDonald House and have lunch with them and we enjoyed our time together so much.  We were saying how we wish we could recreate the Ronald MacDonald House in some way for regular living, as it’s so special and unique, but in the end nothing really does beat living at home.

And then there was the remembrance Day.  The PACT team who helped and supported us so very much as Ava was dying – hosted this day for families who lost a child in 2012 & 2013.  We were so happy to see some more good friends of ours who also came down from Sudbury… they lost their son in September who had hypo-plastic left heart like Ava…it was so nice to have the opportunity to be together and spend time with them.  And there was food and fun, and volunteers to play with the kids and crafts for them to make, and the parents got to talk about how things were after losing a child.   And then at the end of the afternoon we did a balloon release.  The kids had balloons with messages to Ava.  I loved Wills message… “I hope you are having a good time in heaven Ava.  from Will”

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Kinda breaks your heart, but I think I’m pretty good now at suppressing a lot of triggers that might bring me to tears.  I don’t know if that’s good or bad, but it’s rather helpful in a way so I’m fine with it.

So we left Toronto last Saturday thinking a bit more of our sweet baby Ava, and wishing she was here with us.  But on the other hand comforted by the fact that she is no longer suffering and knowing that we will see her once again someday.  OK – funny story… Jason was putting Sophia to bed a few nights after this and Soph was saying how much she missed Ava and wished that she could go to heaven to see her.   Jason reassured her by saying that our whole family would be going to heaven someday to see her, and Sophia replied, “You’re right dad, but you’ll get there much sooner because you are already 41″  HA!  Out of the mouth of babes.

And once again we realized just how much we have to be thankful for.  For the wonderful care that SickKids gave Ava, for an incredible place to stay in the Ronald MacDonald House.  For people’s generosity in supporting us while Jason wasn’t working and we were away from home.  And for all the relationships we gained and the friends we made.   The friends we’ve made have been such a support.   And I wanted to take this moment to mention Tanya – Aleeda’s mom (the little girl who received a heart).   Tanya and I have grown so close from the time together we spent in Toronto.  And we know without a doubt that God placed us together for a reason.   Tanya has been such a great friend to me, and given me so much encouragement and support that I don’t know how I would have navigated this journey without her.   Actually she started her own blog which isn’t so much about her journey as much as it is her thoughts on life… but she posted a wonderful tribute to the nurses of 4D here… it made me all teary.

OK  - I need to stop rambling so I will finish off with a verse.   I have to say once again that our faith in God has been the anchor for our souls through this time of grieving our precious Ava… but knowing that God holds everything is His hands gives us peace and hope.

Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways!  Romans 11:33

Amen!

Spring Clean Up

Two Saturday morning’s ago we loaded up our crew bright and early and headed over to Ava’s cemetery for their annual spring clean-up.   Families typically don’t come along and help with the clean-up, but we had asked last year for them to include us and we are so glad they did.  We feel a little kinship with this sweet country graveyard our baby is buried in – and working there felt like we were doing something for Ava, and as there isn’t anything we can actually do for her now, it felt good.   :)

As we headed out there it was hard to not get teary.  I hadn’t been to Ava’s grave since her birthday in December… the snow and the cold kept me away,  but I do like going even though it’s not always happy.  The first thing I did when I got there was head over to Ava’s grave and had my little cry.   But after the initial sadness passed,   I could just enjoy the day, helping with Jay and the kids and enjoying being outside.

We raked and raked some more, and picked up sticks and tidied up the place with the rest of the board members and some volunteers and it looked ready for spring by the time everyone had finished.   There was even a group of students from a local high-school there helping and that touched my heart.  One of their high school coaches is the grounds-keeper there and he asked them to come and they came, pretty cool.

Here are my boys working hard.  Believe it or not the girls had already abandoned their rakes by this time and were playing….

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I can’t tell you how good it is for my soul to have Ava’s final resting place in such a beautiful peaceful spot (It will be more beautiful in the coming months… honest).  Perhaps because it is such a contrast to most of her life that was spent in the hospital in the big city.   Most of her life couldn’t really be described as peaceful or beautiful, for her or for us.   So even though it’s just her body and not her soul in this little country cemetery, it makes my heart very happy.

And we still miss her so much!    It till hits us hard sometimes when we think of how she came into our lives and then went so quickly.   But even through the grief,  we can still say that we are convinced that God’s plans are for our best.   Jason and I both never want to go back to being the people that we were before Ava – before we knew just how deeply we could trust God through the very hard times, and how faithful God is even when you feel like your world is falling apart.

And Easter was a great reminder of God’s love and sacrifice for us.  In our Easter service we sang “In Christ Alone.  Once again we sang those words that I had up on Ava’s wall at the hospital for so long…

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.

So of course I cried and cried and cried, which is just fine as there is no room for pride at church – you need to park that at the door.  But it just stood as another reminder that yes, what we believed then, we believe now.  What we knew then, we know now.   God is faithful & good and no matter how many springs come and go, He will get us through every one of them.

Amen!

 

 

 

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

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

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

 

 

9 years old

Mr. William John turned 9 last week!

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I’m coming to the realization that I probably have the worst memory in the entire world, but thank goodness I have kept a  journal almost since I could write.  This is a good thing, because when my brain fails me and won’t recall any memories of my kids when they were younger, I can go digging back through my journals.    So I took a peek back and I found something I wrote about Will when he was just over 2 years old…

“And my Willy-baby – I just can’t get enough of him.  With his blond hair and his love of cuddling – and how he gets so excited to see his dad when Jason comes home.  How he loves to snuggle in before a nap and read stories with me, he makes these sounds of satisfaction and I could just eat him up.”

How things have changed and how things have stayed the same!   I’m happy to say that he still loves to cuddle,  is always happy to see us and still loves to read.  But he’s growing up and he loves to write (like his mama?) loves to run and loves God, his friends and his family of course.  (Although once in a while he would probably contemplate trading a sister for a dog).

You know that old saying that you don’t know what you’ve got till it’s gone?   Well I think that for Jason and I it rings true in a slightly different way.  Losing a child has made us love and appreciate our remaining children that much more.  God has certainly blessed us with 4 wonderful gifts.

Happy Birthday Will!

 

 

Hardly know….

I hardly know what to say after all this time!   I’ve been a lazy blogger for sure,  but this cold weather seems to have dulled my mind and most of the time it just felt like I had nothing to write about.   After the first craziness of getting Sarah on a pump at the end of January and February, there hasn’t been really anything exciting going on.   Which might not be strictly true,  but when I think about what we were dealing with last year, things now just don’t seem that big in comparison.   But last year was so out of the ordinary, that getting back to ‘normal’ has been an adjustment, but I will say that normal is good!   Although crazy did include our Ava, so I’ll always look back on that time with some longing.

Since January things have been a little weird for me as well, because all the kids have all been in school and I’ve been home.  They were in September too – but the fall went by so quickly and then it was Christmas that I didn’t notice.    But ever since I quit my job to stay home with the kids before Will was born, I’ve always had a little person at home with me to care for.   And until last August, it was looking like a permanent position.  But then things changed and Sophia started kindergarten and it’s kinda left me high and dry.  But I’m taking this time as a gift from God – time to be quiet and allow my soul to heal.  And Jason and I have some hopes for the fall that will change all of this, so we will keep you posted!

I really enjoyed having the kids at home for March Break even though the weather turned on us.   But we went off and spent a few days with my parents which was wonderful as we got to spend some time with family that we hadn’t seen in a while, including this sweet baby…

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We were back home on Friday and I kicked the kids outside to make snow-sculptures for something to do and the results made me laugh…

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Soph and Sarah made this snow man…  love it!

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Sarah and her snow bear…

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Erik and his snowman crunching snowmen (he reads too much Calvin and Hobbes)

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And Erik’s friend with a cute snow pig…

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Will was sporting a migraine that day so couldn’t participate, but came out later to help judge.  I know it was nice for the kids to get out and play with some packing snow and some sunshine that feels like spring even when the air doesn’t!

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So normal is good, and I would really like to keep exciting at bay for now.  Unless it’s exciting in a good way.  But God knows exactly what we need and I am excited to see what this upcoming year will bring for our family!

6 Month Anniversary

Today is the  6 month anniversary  of our sweet baby Ava’s death… we’ve been without her for half of a year and I find it really hard.  I’ve said it before, but the more time that passes just makes me feel like I’m getting further and further away from her… it’s like I’m leaving her behind and putting more and more miles between us, and I don’t like it.  It’s been six months since I held her and kissed her and told her that I loved her.  Six months since we had 5 children and 6 months since we had to say good-bye to someone who we loved so very much.   And it’s tough, it really is.

But in this grieving process there are still so many things we are thankful for.   First off, we are thankful that people are still praying for us – even though its been six months and we don’t update often.   When people tell me they are still praying we feel so blessed that people have not forgotten us and that God is still laying us on people’s hearts.    Another thing I’m thankful for is just how busy our life is with four kids (no matter how much I complain).   In my life there isn’t often time to just sit and think about how much I miss Ava.  Lying in bed before we go to sleep is often when it hits Jay and I, but this long winter has tired me out and it’s not often I can stay awake for more than a minute or so, praise God for that.  :)

And we know that we were fortunate that we were able to do quite a bit of our grieving before we lost Ava.  The actual truth is that we started grieving before she was born.  We always had a strong hope that she would beat the odds and make it –  but because we almost lost her a few times before she died, it forced us to take a look at what our future would look like without her.   It’s like we were able to practice grieving… and those times were incredibly painful, but it did help prepare us.   And because of that, we know that we are grieving in a complete different way than those who suddenly lose someone they love.  It’s just that for both I’m sure the end result is the same…   living with the memories of a person you long for, and missing them like crazy.

I miss my Birdy… I really do.

Oh that God gave us that precious gift, but only for such a short short time.  Having Ava taught us so much about God’s goodness to us and His incredible faithfulness that if I ever doubt God again I hope someone smacks me… hard.    And there is the promise that God used this time in our lives for His glory and to strengthen our faith and bring us closer to Him. We also know that it made us more aware of the suffering of others and I hope God will continue to keep using these lessons learned in our lives as long as we are here on earth.

Here’s another wonderful promise….

1 Peter 5:10&11 And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.  To him be the dominion forever and ever. Amen.

Praise God for His promises…. Amen!

Pumping and Riding

So here we are after a whole week of pumping and I can say without hesitation that Sarah loves her pump!      She seems to have adjusted well to having to wear her insulin pump 24/7 and I can say that we are all enjoying the freedom that it gives her eating wise.   When Sarah was getting her needles every day she had a set amount of carbohydrates that she could eat for each meal and snack, but now with the pump there is none of that.  She can eat what she wants, when she wants.  Oh the freedom!

We were a little worried that once she started pumping, she was going to want to binge and not stop eating, but it hasn’t been that way at all.  She’s actually been eating roughly the same amount of carbs as before, she just eats them at different times.    When she first got started last week and was still getting used to it, at one point she asked me hesitantly at snack-time, “Mom, can I have a yogurt AND a cookie?”  And I could answer for the first time in over a year, “YES!  Yes, you may have a yogurt AND a cookie for  a snack.”   It felt so good.

Here is  a look at her pump and her insertion site where it plugs into her.   The only draw-back is that the site has to be changed every 3 days, but Sarah is a trooper and thanks to new friends of ours, we found an insertion set that is very easy to use and install.

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And the pump came just two days after her 7th birthday,  I wish it had come a little bit sooner, but we saved her birthday cake for a few days after her birthday to enjoy with grandma and grandpa.   Sarah was with me at Costco and picked it out.  It was rather large, but she so badly wanted a nice juicy cake that I capitulated and bought it for her.    And just look at her face….

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And her piece was a whole whooping 100 carbohydrates!    But the pump could handle it.   We just told the pump what she was eating and it gave her the right amount of insulin… wonderful.  (That’s her “checker” right beside her by-the-way.   Her meter and “poker” that we use to check her blood sugar levels,  we never go anywhere without it.)

She did have nice 7th birthday, with an impromptu birthday party with her neighborhood pals where we made these little birdies…

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Perhaps I’m a little obsessed with birds, but these birdies are really sweet and  I like to think of it as bringing a part of Ava into things.   I found the pattern here if anyone is interested.

And then, as part of her present from us and grandma, we gave Sarah got horse-back riding lessons!   She loves horses like many little girls, and after visiting a friends farm with horses a few years ago I knew that she had no fear of them.   So through a friend we hooked her up with some lessons.  And even though it was cold last night and the barn wasn’t heated, she enjoyed riding “Swiper” and can’t wait to do it again next week.

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It’s been a busy couple of weeks here with the transition to pumping, but all in all it’s going well.   It’s been a bit stressful, just because it’s new, but when we see how happy it’s made Sarah we know we made the right choice.

Happy pumping Sarah!

Something to look forward too…

I’m so excited to be able to announce that in 9 days Sarah will ditch her needles and start using an insulin pump… yipee!   We have known this was coming for a while, but last week we actually received her new pump and tomorrow we go to clinic so that Sarah can be hooked up to it and wear it for 24 hours just for practice.   Then we go back January 28th to really start with insulin.   We are so excited and so relieved.

The pump is going to be such a game changer for her.  Yes it means that she has to wear a device 24/7…  but she will finally be able to eat like a normal human being again!  She can snack an hour after breakfast if she wants… she can eat a late lunch or skip lunch all together.. and she can have dessert and eat birthday cake, woohoo!!!!     Right now when she’s getting needles we have to match carbs to the amount of insulin she gets, so we have had to be really regimented with snack-times and the amount of carbs she eats for meals and snacks.    It’s been hard on her and it will be nice to give her back the freedom that she craves.

Here is Sarah waiting at her last clinic visit… insulin pump here we come!!

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The Highs and the Lows..

Now don’t worry, this post is not about the highs and lows of our Christmas break,  haha.  :)  No, this post is about the highs and lows of living with diabetes… literally and figuratively.   Oh Sarah, December was a crazy month for her and her diabetes.

She’s actually had diabetes for over a year now as she was diagnosed December 20th 2012 (a day we did NOT celebrate) and it’s become a part of our life now, but it’s something we can never become complacent about.   Thankfully – and this is totally God’s goodness towards us –  until the beginning of this December, taking care of Sarah was fairly straightforward and this was because she was still in what is called the “honeymoon phase” of diabetes.

The honeymoon phase is when you still have some Beta cells (insulin producers) left in your pancreas that your immune system hasn’t gotten around to destroying yet.   Because your body can still make a little bit of insulin, it helps keep your blood glucose (or ‘blood sugar’ as we call it here) on a more even keel.   In Sarah’s case, we could always count on her body leveling her out at night.  If she went to bed with a high blood sugar, in the morning she would be back to normal, and she never ever woke up with low blood sugar.  So not only was she still producing a big of insulin, her body was still managing her glucagon well.   Glucagon  is a hormone made by the Alpha cells in your pancreas, and it’s function in the opposite of insulin, as it’s job is to bring up the glucose levels in your blood so that they never get too low.  Some of you might have experienced some mild hypoglycemia… where you feel all week and shaky when you’ve gotten really really hungry, well that’s when glucagon is supposed to go into action and tell your liver to release more sugar into your bloodstream.    When you have diabetes, even though the body doesn’t destroy your Alpha cells on its crazy auto-immune rampage, once your Beta cells aren’t functioning, your body doesn’t seem to be able to manage glucagon either.  So then hypoglycemia becomes a huge problem for diabetics because your body doesn’t stop it.   If you have too much insulin in your blood and not enough sugar then you can go low,  and if it gets too low, you can slip into a coma or even have a seizure.  Not good.

So like I said, up until December we were just going along, managing Sarah and keeping her fairly steady,  when all of a sudden at the beginning of the month it seemed very clear that Sarah was leaving the honeymoon period, and fast.    Her blood sugar levels were all over the place, and often really high and weren’t coming down at night like before.   This was frustrating because we thought at first that Sarah was just sneaking food and when she has high blood sugar she is MISERABLE!    And when you have four kids, when one is miserable they all are miserable it affects everyone.

When we went to the diabetes clinic at the beginning of December they saw her numbers and upped all her insulin as well as adding in some night-time insulin to help bring her down at night.  So this meant she had to start a fourth needle in the day (poor kid), but it still wasn’t helping.  So with the help on the nurse, we upped her insulin again, and then a week or so later had to up a third time, until finally we started seeing some better numbers again.    But then Sarah started getting lows,  where she would have too much insulin in her blood and her blood sugar would go down to low…  and since these lows were new for us, they were a bit disconcerting and rather scary.   Thankfully she is pretty good about telling us when she is feeling low, but on Boxing Day, when we went to my parents place, Sarah wouldn’t get out of the car.  We thought she was just playing shy or being a pickle, so we just left her there.  But after a few minute I went out to try to get her to come in and she wouldn’t.  We thought about just leaving her and were getting kind of frustrated that she was acting so weird when Jason thought he better check her blood and that’s when we found out she was low… really really low…. ACK!!!    Both the highs and lows can really affect Sarah’s behaviour and as a parent it’s going to be tough trying to separate her behaviour from the blood sugar side effects, especially as she gets older.

So things aren’t easy, but we still have Sarah with us and that’s enough.  And like we said before, Jason and I just are so grateful to God that for most of the year Sarah’s diabetes wasn’t an issue, that we could worry about Ava without having to worry about Sarah at the same time.  I know that we often like to say that God doesn’t give us more than we can handle, but I don’t really agree with that.  To quote a pastor whose blog I follow –   The Blazing Center -  Steven Altrogge said,  “God burdens us beyond our strength so that we will be forced to utterly and completely depend on him.”  a statement which I completely agree with.

People have so many times told us how strong we are, and I have to say over and over again… nope, it’s not us.  We’re not strong, we’re weak.  But we know the one who is strong and who is holding us in His hands, and we know that we can depend on Him utterly, even in death, even in diabetes.

Amen!

Psalm 55:22

22 Cast your burden on the Lord,
and he will sustain you;

he will never permit
the righteous to be moved.

Happy New Year!

January 1, 2014… I wonder what this year will bring?

Our last two years have been, well, interesting… to put it mildly.    However, God has used these past two years to teach Jason and I decades worth of lessons, all compiled into a short time span.   I also know that we’ll forever look back at these two years as ones we never want to forget… especially as God brought a beautiful person into our lives and took her away. These past two years hold all of our memories with Ava and we will always hold them close to our heart.

But we look forward to this next year with anticipation, wondering what God is going to do and where He is going to lead us.   A part of me feels like I’m waiting for something BIG to happen in our lives, but that could be just me trying to adjust to ‘normal’ living again.   And if I were honest, if this were going to be the most boring year in my history, I would be Ok with that, although I have a feeling that’s not going to happen.

So looking forward, I’ve decided to just simplify… I’ve picked a verse that will guide me through this year and I know that WHATEVER God brings into our lives this year, it will be Ok.  He will be faithful, I can guarantee it.

Here’s my verse and my new year’s resolution all in one…

Micah 6:8

 He has told you, O man, what is good;
and what does the Lord require of you
but to do justice, and to love kindness,
and to walk humbly with your God

 

Happy New Year!