Thursday, April 17, 2014

1 Year of Type 1 Diabetes :: Part 5 :: Day to Day

*Thank you for all the feedback for Aaron on his last video.  I was so happy to pass your kind comments on to him!*

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Need to get caught up?  Read here:

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Thanks so much for sticking with us through this mini series on Aaron's diagnosis of type 1 Diabetes.  We're wrapping things up with a look at what it's like having type 1 day to day - for a child and for his parents.  

When you leave the hospital with your newly-diagnosed-with-type 1 diabetes child your new task is to keep his blood glucose levels as even as possible.  This is the most insane and ridiculous and crazy task in the world.  A diabetic's levels will never actually be  "even" because there is no way for manufactured, injected insulin to work with the same delicate precision as a functioning pancreas and a body's natural insulin.  Maintaining decent levels can be stressful, frustrating, confusing, and overwhelming, especially in the beginning.   There's a steep learning curve that first year.  There are some major life adjustments that, once they become routine, don't seem so daunting.  But those first few months?  Daunting.  

Most of the "daily routine" of diabetes actually is routine now, both for Aaron and for Russ and I.  Aaron checks his blood glucose levels 4-6 times a day - before meals, before bed, before/during physical activity,  and if he's feeling "low." (Low blood sugar is dangerous in the short term - a diabetic can become unconscious and suffer brain damage in extreme cases.  Uncontrolled high blood sugars cause more problems in the long term.)  Some nights Russ or I (usually Russ, because he's awesome like that) check Aaron's blood 1-2 times (especially when we're testing out a new dose of Lantus insulin.)  Aaron receives an injection (more like an epi-pen than a huge syringe) of Humalog insulin during or after every meal (and some snacks) and one of Lantus at dinner.  Humalog is the insulin that covers the carbohydrates he consumes at meals and snacks, Lantus provides a slow-release/long lasting dose of insulin over a 24 hour period.   

When we leave the house, all the stuff comes with us.  So do glucose tabs, a juice box, and Smarties to treat lows.   And we always have our Calorie, Fat, and Carbohydrate Counter Book on hand.  

That's just the normal day-to-day stuff.  There's much more that goes into caring for Aaron.  "Special circumstances" that demand extra attention include physical activity,  illness, dental work (happening this weekend...), stressful situations (like test-taking),  cuts and infections, dry skin, and so on...

A year later... it's mostly routine.  But that doesn't mean it's easy.  

Even now,  Aaron still gets blood glucose readings that completely baffle us.  What???  We TOTALLY counted that bowl of oatmeal and fruit right!!!  What do you mean he's at 387 before lunch???  (Optimal blood glucose levels are around 100.)  

There are days we completely forget all about diabetes and we plan a super fun outing and we leave for the day without a stitch of testing equipment or a drop of insulin.  Wake up, people!  It's been a year!  It's a situation that makes for a lot of parental guilt, stress, and ridiculous numbers later in the day...

hehe... remember this guy!!
Aaron visits a pediatric diabetes clinic every three months to meet with his endocrinologist, a fellow or a resident, a certified diabetes educator, and a nutritionist.  And even though we've been trying really hard to get carb counting right and insulin dosing accurate, he still gets high results on his A1C readings.   Ahhhhh!!  We're really trying hard, I swear!  (The A1C test gives a broader picture/average of what blood glucose levels have been like over the past 2-3 months.)   I just try to be prepared for the fact that the endo will probably never use the adjective "level" to describe his actual "levels."  

It really can be crazy trying to juggle it all - at home, on the road, with other kids under foot, and on top of all the regular old craziness of everyday life.  But the feelings of stress, anxiety, and frustration of which I speak are mostly just in reference to myself and Russ.  Aaron has been the least phased of all by all his diagnosis and treatment.  What a blessing to have a child that isn't resistant to all that goes into caring for him.  I can't imagine the additional difficulties faced by a family in which the newly diagnosed child is resistant to the needles and the extra time and "stuff" that surround meal times.  They have my prayers and sympathy.  Aaron occasionally has a mini-complaint about caring for his illness, but for the most part, he's fabulous.  Here he is to conclude this mini series.  He will show you what it's like to check his blood and receive insulin at snack time.  It's real life - totally unedited, including the part where he wipes his bloody finger on his shirt.  (I'm so embarrassed!)  



  1. I found your blog the other day when someone shared your post on the Life-Changing Magic book on FB (which I really enjoyed!). This morning I saw a post on FB from your preschool series, and after reading it and realizing this was the same blog I discovered the other day, and actually having some time to sit and scroll, I started reading more of your posts. I thought, hey, I can totally relate to this lady - homeschooling, 5 young kids, and St. Josemaria on the sidebar. ;) Then I came across your diabetes posts! My oldest just turned 6, and was diagnosed 5 months ago. His diagnosis story was very similar to Aaron's - mama gut that something was off, extreme thirst/urination, weight loss, and praise God, no DKA at diagnosis, so the hospital stay was fairly short. While I'm not glad that either of our boys have T1D, it is sooo nice to find another mom who is dealing with both the diagnosis and daily care as well as raising for a bunch of littles, and sharing about both in a positive way! I have found a lot of people who have one challenge or the other, but not both simultaneously. ;)

    I absolutely love your "So Be It" post, because I have felt so many of the same emotions, trying to discuss and share without feeling like I'm complaining. I really love your comparison to Christ carrying His cross. The times where I have been overwhelmed and wondered "why us?", Christ as our model for suffering has come into my head. It doesn't necessarily make the middle of the night checks or the "HI" alert on the meter EASIER, but being able to unite our difficulties with Jesus' helps us realize that suffering isn't in vain. I feel like this whole rollercoaster has been easier to accept and even understand in light of our Faith.

    My kids all gathered around to watch Aaron's videos and were so impressed. My 6yo Nate said, "Wow, he really knows what he's talking about!" ;) I think he has a new hero.

    Sorry so long, finding your blog has just been such a blessing to me today!

    1. Colleen, thank you so very much for your comment, your kind words, and sharing some of your're story with me!
      You're right, I wouldn't wish diabetes on anyone, but finding a mom with such similar circumstances is a gift! Are you familiar with the facebook group Catholic Parents Support Group - Children with Diabetes? It's worth checking out. If you want want to email me, perhaps we can chat more! It was nice the "meet" you! (

  2. Thank you so much for this series and the other lists you have done on this topic. My friend's 6 year old was diagnosed a few days ago and it is pretty easy to find facts about diabetes online but it is quite another to read about the emotions involved. It helps me understand a bit more what my friend is going through so I can offer better support. And it is a huge bonus to find information from a believer (we are not Catholic but are Christians) and a fellow homeschooling mom.

    My sons and I also really appreciated watching Aaron talk about diabetes and demonstrate his routine for having a carb snack. It was nice for us all to see what our little friend will need to do. It has helped make it more real to us all so that we can be more understanding when they come home from the hospital and are ready for visiting.
    Is there anything else that you would have liked your friends to know about life as a D-mom? I realize that I won't have the full responsibility of caring for him but I also know that a burden is lighter with loved ones by your side. We want to make our home a safe haven for him. A place where he can come and be a normal kid and his parents can know that he is in good hands.

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