Instead of perfection…

A few weeks ago Sarah and I were back at the hospital for another diabetes clinic.  We typically go every three months, but this time it had been closer to 4 1/2 and I was nervous.  To be honest, I’m always nervous at these appointments.   The team takes a look at all of Sarah’s numbers that have been downloaded from her pump, and they look at her A1C – a quick blood test they do that shows the over-all amount percentage of sugar that has attached to her red blood cells – and together this shows the team how well we’ve been managing Sarah’s diabetes.

And although that sounds benign on paper, as I’m sitting in the room waiting for the doctor to come I’m quaking on the inside.  I thinking of all the times that I forgot to give Sarah insulin, or we didn’t count carbs right and how often her numbers were higher than they should have been and then I feel like I’m  waiting for exam results.  Like they are going to come into the room and tell me if I’ve passed or failed, and all I can see in my mind is a big red “F” stamped on Sarah’s medical chart.     Now, in saying all of this I’m doing a disservice to Sarah’s wonderful medical team who has NEVER once treated her diabetes care like this, it’s just me.  It’s a heavy burden I put on myself and I’ve usually got myself so wound up before these visits I often shed some tears.

However on this visit I was so relieved to find that we passed!  hahaha   Sarah’s A1C’s had come down slightly (which is good!) and the doctor was fine with what her numbers had been over-all and I could finally relax.  I thanked the doctor for being so good to us, and always being encouraging rather than judgemental.  He asked me if I had heard his space-ship to the moon story.  I hadn’t, so he told me.  He told me the story about how U.S. President John F. Kennedy wanted NASA to put a man on the moon.  Finally in 1969 they were ready and Apollo 11 started it’s journey into outer-space.  The doctor then asked me how many times during that journey the rocket was actually headed in the right direction towards the moon.  My guess was 75% but he came back and said, “Nope, 5%”.   I was really surprised by that number… wow!  The doctor went on to say that we need to take that perspective with diabetes care.  We are always striving for the moon and those great numbers, but have to realize that it’s a process, that it’s going to constantly need tweaking and small changes here and there, but the most important thing is to keep going.  It’s a journey.    And I liked that.   Perfection is obviously what we are striving for, but the fact that NASA did something amazing without perfection has really made me think about Sarah’s diabetes care in a new light.  It give me a long-view sort of mindset – one that takes some pressure off the here and now, knowing that we probably never will perfect, but there is always tomorrow.

But God clearly wanted to bring this idea into other areas of my life, and one of those is my anger.  My anger and frustration with my kids when they aren’t listening or they argue with each other, or they don’t do what they are supposed to do, and how I can just get mad when life doesn’t go my way.  I get frustrated because in my mind I’m telling myself, ‘It’s not supposed to be like this, why can’t everyone just do what they are supposed to do so we can have the happy life that I want?’

I read this line regarding parenting from Auntie Leila over at Like Mother like Daughter the other day… “The sooner you learn that frustration is part of the process, the happier you will be.  Our worst enemy is thinking that things should be perfect.”   This quote almost knocked me over!  And it struck me that it’s so true!  I was looking at problems completely the wrong way, thinking that they shouldn’t exist at all, instead of realizing it’s just a part of life!

It’s kinda funny because my friend Tania is currently parenting 4 little girls, 3 years of age and under, and we get a kick out of 2 of her children who get frustrated so easily, even when they are trying to accomplish things beyond their skill level.  Like her baby who gets frustrated because she can’t crawl around as fast as her older sisters can move around, and so just puts her  head down and howls.  We laugh because we know it’s part of the process.  We don’t expect a baby to just stand up and walk one day… we know that it takes lots of practice, lots of falls and lots of frustration on their part and we accept that it is part of the process of growing up and learning a new skill.  So why have I decided somewhere along the line that things in my life have to be perfect all the time?  I’m not perfect, why would I expect this of others?   Clearly I need a paradigm shift.

Apparently perfection isn’t always a good thing anyway.  I recently read an article from John Piper entitled  “Parents, you can’t build heaven here”.   He said that too often we try to make heaven for our children in the right here and now.  We try to bring too much perfection in a child’s life – guarding them from too much or trying to give them too much in the name of our love for them, but this actually back-fires because it teaches children that they deserve perfection.  And then when life (as we all know too well) falls very short of the perfection they are used to – these kids don’t know how to persevere and deal with problems.  Instead of helping them,  we’ve actually hindered their growth.

The verse that is used in John Piper’s article is Philippians 3:12, such a great verse….

12 Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. 13 Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, 14 I press on toward the goal for the prize of the upward call of God in Christ Jesus.  Phil 3:12-14

Paul is telling us to keep going because we haven’t obtained perfection.  Yes, it is our goal, but we have to keep forgetting what is behind and straining forward towards our goal.  He doesn’t beat us up for not having obtained it… obtaining it is a future thing to look forward to, through the hard work of living and trying and striving.

I can see that it’s time for me to accept that frustration is a part of my life I can’t escape and so just deal.  And if that frustration causes me to stop and refocus, or learn something new, or teach my children something new, or make changes along the way to my final goal (which in my life is to be more like Christ), then right now I am willing to take frustration instead of perfection – knowing that when perfection finally comes it will have been well worth the fight.

 

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You don’t know the half of it

Last November, JDRF  the leader in research and advocacy for type 1 diabetes put out some videos called “You Don’t Know the Half Of It“.   They showed interviews with people or children with type 1 diabetes who talked about what it’s really like,  the things that people don’t see and don’t really understand about this disease.   Jason said the video’s were depressing, and I agree, they kinda were. 🙂   But really, I think that was the point.    Those smart people at JDRF know that most people only see the outside of the disease, and they really wanted to show the darker side, the hard things about living with diabetes that people wouldn’t ever see.

But these videos got me to thinking that even though our struggle here is with diabetes , I know that so many people are struggling with different things.   Our family has received a crash course in type 1 diabetes, but in turn we know so little about the cystic fibrosis, the fetal alcohol, the ADHD, the autism and the congenital blindness – and the list goes on – that my friends and their children are dealing with.    I many have gleaned a tiny bit of information from articles I’ve read, and picked up a few insights from spending time with these children, but do I really know the half of what they are dealing with?   Probably not.

And can I tell you something?   I RESENT it very much when kind-hearted people have told me what I should be doing for Sarah, and are sure that if I just did this one thing her diabetes would be easier to manage.  Thankfully this hasn’t happened very often, and to be honest I’m not sure why I get upset.   Maybe it’s because diabetes already hurts and I already know that there isn’t an easy way out and I wished this person really knew what they were talking about and what we were going through.

But then I kinda of cringe here, because I know that many times my pride has deceived me and allowed me to believe that I have some special insight into other people’s problems and have allowed thoughtless opinionated words to come out.  It’s makes me sad because I don’t want to be that person, I want to be wise!!!   I love that verse in James (James 3:13-18) when he says, “Who is wise and understanding among you?”  And guess what, wisdom isn’t pointing the finger because I’m harbouring selfish ambition, or being proud and therefore critical.  And it’s certainly not telling others what you think they should be doing.   James says wisdom from the Lord is  “first pure, then peaceable, gentle, open to reason, full of mercy and good fruits, impartial and sincere.”  

I heard a quote recently that made me laugh – it was “Not my monkeys, not my circus”.   I liked it because I know how easy it is to get drawn into things that really don’t have anything to do with me.   And in most cases, especially when it concerns other people’s children,  I need to remember that I don’t know the half of it.

 

At least we’ve average….

In between my last diabetes post and this one,  things have gone down-hill, then more down-hill, then an even keel and perhaps finally we are on an upward swing with Sarah’s diabetes.  Can I just take a moment to say how rotten and horrible and down-right annoying diabetes is?   It is!  It’s a royal pain in the you-know-what and we will never get used to it and I don’t think we ever should get used to it.   And now I shall do my best to sum up the situation.

Back in November Sarah and I went to the hospital for a clinic/pump training day, and there we found her A1C’s had gone up a whole percentage.   This wasn’t great news – when they test your A1C ‘s they are checking the percentage of hemoglobin that is covered in sugar – and this gives them an over-all picture of how well you have managed your diabetes in the past three months.   And this test showed that Sarah’s percentage had gone up significantly and now was higher than they would like it to be.   It was upsetting because it’s means that I’m not doing a great job managing her diabetes – and it also means we were a statistic.  It’s a researched fact that when diabetics start using an insulin pump their blood sugar control starts out great, and their A1C’s tend to come down (that’s good) but by the end of a year – and that’s where we were at – people’s control over their diabetes tends to wane a bit and they typically end up back to where they were before the pump with higher A1C’s again (not good).   I think this is generally contributed to complacency, people just ride the wave of initial good control and stop paying attending.   So I went home kinda down and frustrated, but on the other hand determined to do better.

But things weren’t getting better and I was finding that I was getting frustrated with Sarah because she didn’t seem to care at all and certainly wasn’t doing things that were helping the situation.  And how do you try to tell a 8-year-old that there will be long-term consequences for their actions?   In my frustration I called a friend, and I’m so grateful that God has provided me with her.  Her daughter has had diabetes for over 10 years and so she is no stranger to all the ups and downs on dealing with this frustrating disease.  And guess what the first thing she told me I had  to stop doing was?   Well get this, she told me to stop feeling sorry for Sarah.

I had to stop feeling sorry for Sarah????

But of course I felt sorry for Sarah!   Jason and I feel very sorry that our healthy daughter was stricken with a disease for no known reason, and we feel sorry that she has to live with it and endure and the poking and prodding and it really upsets me just to think about what could happen to her if we aren’t diligent all of the time.   However, I could see what my friend meant.   Unknowing I was communicating my sympathy to Sarah and it wasn’t helping her, in fact it was hindering her.  Because I was feeling sorry for her, she was feeling sorry for herself, she only saw her diabetes as something bad and something that wasn’t fair.   And because of this I don’t think either of us were properly viewing it as something to be managed well – it was just a burden.   And I think that I was trying to shield Sarah from it – which meant that she felt she had no responsibility and no consequences.

It shook me to realize  that I wasn’t viewing it correctly –  and that it stemmed from me not realizing that God could have a purpose in this.  Jason and I had a clear understanding that God had a purpose for Ava’s life, and we completely accepted how that turned out.  But for some reason I could never see how diabetes could bring God glory.   But my friend went on to say that God did give diabetes to Sarah – it is His refining fire in her life,  He is going to use it for His glory and I shouldn’t feel sorry that God has allowed this to happen, just the opposite!  Of course God brings difficult things into our lives, but whining and complaining and feeling sorry for ourselves doesn’t accomplish God’s purpose, how could it?  But if we can see Sarah’s diabetes as something from His hand, to develop perseverance and faithfulness and to please Him by remaining under it, that’s the only place that we can find true joy in something so miserable as type 1 diabetes.

So after asking forgiveness I changed my perceptive and instead of having a good cry with Sarah about her diabetes,  we had a talk about how God allowed this for her and it was going to make her stronger and it was exciting to think of how God was going to use this in her life.  And it helped!   Her attitude towards it has changed (for the most part) and now she cares what her blood glucose levels are, and that’s great.   We still have our cries, it’s not easy living with this disease, but I’m happy to say through our tears I can remind her that God has a purpose,  and that has been wonderful.

And I wish I could say that at our next clinic visit at the end of January her A1C’s went down and all was well – but that wasn’t the case.  They stayed the same in spite of our hard work and it was incredible frustrating!  Grrr…stupid diabetes!  But the kind doctor told me that even though they would like her A1C’s to be lower,  we are right at the pediatric national average.   So we aren’t doing a great job or a bad job, we are just completely average 🙂    But things are starting to look up!   Last Sunday I shared with my small group our frustration with Sarah’s diabetes and I know they have been praying for us because these past four days we seem to be in a better groove and her daily numbers are coming down (that’s good) and I’m so grateful that we have a loving heavenly Father who although allows all these trials and difficulties in our lives, He never ever leaves us or forsakes us.  Not ever.

Amen.

 Be strong and courageous…. for it is the Lord your God who goes with you. He will not leave you or forsake you.”  Deut 31:6

P.S.   I just gotta tack this on to this post… with the rise of Type 2 diabetes, it’s not unnatural for people to get confused between the two diseases, but they are completely different and I’m learning to be gracious when people try to give us good advice, or ask if Sarah can eat something (she can eat everything!!)  Here’s a really cute type 1 diabetes rant…

 

Mama Pancreas

November is Diabetes awareness month!   I should have posted this last Friday on World Diabetes Day, but I’m not that organized.    Now perhaps I should have named this post ‘Mamma and Papa Pancreas’;  but as I’m with Sarah all day, every day now–I really do feel like I can safely call myself Mama Pancreas without stepping on Jason’s toes.

Sometimes, actually lots of times, quite often really,  I tend to forget just how much Type 1 Diabetes has changed our lives,  and more importantly how it has changed Sarah’s life.  And this is the part that makes me what to stop and have a little cry for my daughter who needs insulin pumped into her around the clock, who wears an electronic device 24/7, and who can’t remember what it’s like to go a whole day without pricking her finger at least 5 or 6 times.   I know she would love to just go back to those days where she could just eat something, anything, without having to stop and think about how many carbs it is and then tell her pump that number so that she gets enough insulin to cover that food.   To not have to endure a site change every three days, where we freeze a little patch of skin on her tummy, and then insert another infusion site into her, and then have to put up with the rashes from the medical tape and spots on her tummy from previous sites that hopefully one day will fade.

Whew…. diabetes is not fun.  But we do have lots to be thankful for still, yes even in this.   First of; it’s a great day-in-age to have diabetes because they seem to be getting closer and closer to a cure – or at least effective work-arounds all the time.   So that is exciting.   And to be able to wear a pump and have the control that we have over Sarah’s blood sugar is wonderful too – even if it does mean I get the privilege of checking her blood sugar before I go to bed and sometimes even in the middle of the night.

And I’m so thankful that Sarah is who she is–a strong brave girl who doesn’t let diabetes get her down.   She swam all summer long, and was in and out of the lake and pool like a fish.  She plays hard outside and inside and it hasn’t stopped her from doing anything she wants to do.    Once in a while she breaks down a little and we have a little cry together over it, but then she’s off again.   And her insulin pump that she started wearing last year at the end of January has been wonderful and her A1C’s (a test they use to look at blood sugar levels over the past three months)  have been really good, so that is encouraging.  I try so hard not to get frustrated with myself and with her when she eats something and we forget to bolus and her sugar gets out of whack.   But really,  there doesn’t seem to be much of a point to strive for perfection with blood sugar control because even things like her getting really upset can affect her  levels.   It is what it is.   It’s a treatable manageable disease that God has allowed into our lives for His purpose and His glory and we accept it — sometimes rail heavily against it but I know that God understands that we still feel pain even when accepting His will.

Maybe things like this are put into our lives to make us look forward to heaven more… no diabetes in heaven, hurrah!   I’m just thankful that we have Sarah and that she is healthy and that we get to enjoy everyday with our precious daughter who is growing up so fast!!!

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And I love the way she doesn’t care that her pump is out there for the world to see,  in fact I think it’s great.

Here’s this verse AGAIN that we can cling too;  I can’t get enough of it…

 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.  Romans 8:18

Heaven is going to make all this so worth it!

Amen.

What we’ve been up too…

And here I was, planning to get back to blogging and do it regularly, but as this post is almost two months later, that clearly didn’t happen.  But what did happen was that we had a great summer with our family and friends which ended way to quickly.   And then… well I hinted at this a long time ago, but this fall we made a huge decision for our family going forward,  we started homeschooling!!!!   Yes folks, it’s true, we decided to pull our children out of the public school system and start teaching them at home, it’s kinda exciting.  And that probably explains why I haven’t had much time to breathe, let alone blog.

It’s been about 6 weeks and I can cautiously say it’s going well… although I can pretty much guarantee this won’t be a blog where you come to for homeschooling advice.  Rather, we are likely to be the blog that other homeschoolers visit so that they can feel good about themselves… haha    But we are creating a daily routine for ourselves and things do seem to be getting learned so that’s good.   I’m cutting them some slack right now because I KNOW without a doubt that none of my children would have ever flung a math book across the room at school, but at home that can seem like a good thing to do.   I guess trying to set up structure and routine in a place where you feel the most comfortable isn’t the easiest.  But we are persevering.

And the kids are doing really good, and seem to be enjoy being at home.   They really like the fact that if they hunker down and get their work done, it leaves them more time to do what they want to do.  And I like that we can tailor their education to each of their strength’s and weaknesses…  which also means we have to work around my strengths and weaknesses.  Weaknesses in the plural.  Homeschooling is humbling, it really is.

On a lighter note,  I want to take this moment to brag that our William came in 2nd in his cross country meet last week, way to go William!

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He couldn’t run in the Public School’s Cross Country meet this year, but ran in the Christian school meet instead.   There was still a large crowd and Jason thinks there were over 75 boys in his race, maybe more, so we were really very proud that he did so well.  I’m not sure where he got his speed from, maybe from his dad, but it certainly is fun to watch.

I wish I had been able to be there, but as it happens  I was in Toronto at SickKids that day.   I had been asked by the PACT team if I would come and speak at a seminar they were holding on palliative care, and I was very honoured and so said yes.  My mom came to be our substitute teacher for the day, and my dad came with me to Toronto.  I thought that I might cry too much or take too long, but praise God, it all went well.  There was a question period afterwards and I really enjoyed that, the students of the course asked me questions and one of the Dr’s on the team sat with me and facilitated as well as asked me more questions, and I just thought it was a really neat experience.   Not only was I pleased to give back to SickKids in this way, but I was able to see lots of our 4D staff, and one of our nurses from the CCU, as well as some members of the PACT team I hadn’t seen since last August.  Going back to SickKids is always bitter-sweet – but going there makes me feel close to Ava so it’s all good.  Jason and the kids wished that they could have joined me, so we are hoping to go back again soon.

As far as the other kids and what they are up too… Sarah is doing pretty good with her diabetes and her pump – she actually deserves a whole blog post for an update which I will do next.  And Sophia is just her happy sunny self… although lately it seems that she is fed up with being the youngest child.  She is taking to heart every time she doesn’t get to do something or feels left out – it’s tough being five years old.   Erik is programming his heart out  – which means he is still doing things that befuddle me completely so that’s good I think.   Jason is keeping busy as always and I am so thankful for such a wonderful supportive husband who takes such good care of us all.

I wish I had some recent pictures to show you, but I’ve been terrible and haven’t been taking pictures lately, so I will have to leave you with some that we took during our vacation in August.  These first three are pics of us sending off Chinese lanterns to remember our sweet little Birdy.  Jason found them for us and we loved sending them off… they were beautiful and it felt very fitting…

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And here are the four turkeys all together…

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So that’s what we’ve been up too in a nutshell.   We are so thankful for all of our blessings and God’s mercy towards us… it’s amazing.

Ephesians 3:20  Now to him who is able to do far more abundantly than all that we ask or think,according to the power at work within us,
21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. 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.

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.

Challenges

I had a bit of an emotional day yesterday.  And no, it wasn’t because of Ava, it was because of Sarah… or I guess because of her diabetes.    Since we’ve been home and the care for Sarah has shifted from Jason to myself, I’ve been going at it for two months now, but it struck me that this is not going away… ever.   And it just seems so huge.

I guess it’s just that some days it’s just so over-whelming.   Like Thursday night when I made dinner and then sat down to figure out the carbohydrate count of the meal… for some reason it just ended being so complicated and I just couldn’t figure it out and dinner was delayed and it was extremely frustrating.   And then there are the days when Sarah doesn’t want to check her blood and flinches when she gets her needles and I just want diabetes to be gone and I just don’t want Sarah to have to deal with it for another day.

I’m so grateful to my friend Kim who was doing some research on Type 1 diabetes on Thursday and sent me some pins and then I went looking for some myself.  So I’m not sure if she found these or I did… but I like ’em…

heros

And this one, the definition of bravery….

i_do_what_i_have_to_to_survive_by_atouchofdestiny-d4ddgdy

And of course this one…

babydiabetes

Hahaha.    But once again God is faithful and He gives us the peace and the grace to deal all the ups and downs of diabetes.   Through the times when Sarah’s sugars are out of wack and we don’t know why, or when we think about the upcoming seasons of candy and treats and having to find a way to make it all work for her, without making her feel stigmatized or left-out, and without making her resent her siblings or them resent her.  Sigh.   Oh the challenges life throws our way.

And speaking about challenges, please pray for Aleeda and her mom Tanya.  Aleeda is our little friend from Sick Kids who received her new heart at the end of July, but is still in the hospital dealing with some feeding issues.  Before her heart transplant she was doing a combination of oral feeding and being topped up through her ng tube at night.  But now the doctors have decided that she needs a g-tube, a surgically placed feeding tube that will go directly into her stomach.   I’m excited because I actually have a plan to go to Toronto on Monday to spend the day with Tanya and Aleeda and our other friends at Sick kids, so I would really appreciate your prayers just to ensure my health stays good between now and then so I don’t carry any unwanted bugs to Aleeda.

Please also pray for little Leo, another one of our cardiac friends who is having major surgery done at Sick Kids on Monday.  We are so grateful he will be in good hands!

I’m so thankful that I serve a great God who knows all about challenges,  and has promised that He will give me everything I need.   That why I love this verse,

2 Peter 1:3 His divine power has granted to us all things that pertain to life and godliness, through the knowledge of him who called us to his own glory and excellence,

I can just rest in His promises.  Praise God.

Amen.