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…

 

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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.