Wednesday, December 30, 2015


The first diaversary was challenging, especially looking at the things I posted leading up to Sugar Bear's diagnosis.  This year, year 2, totally different but still challenging.

I haven't written anything in months, not because I don't want to but keeping two children alive during the holidays isn't as straightforward as the rest of the year.  Halloween, Thanksgiving, Christmas are all "food" celebrations.  Has this journey gotten "easier"?  I get asked that periodically.  Not really, is how I want to honestly answer.  Have you ever been told that if you put a live frog in a pot of boiling water they immediately jump out but if you put him in a cold pot of water and slowly bring it to a boil he'll stay until he dies? Yup, I think this pot of slightly warm water is soooo relaxing.

I received a Dr. Who weeping angel t-shirt for Christmas.  It got me thinking.  Type 1 is a lot like a weeping angel, as long as you don't blink it doesn't seem scary.  I know that's a bit of a stretch but it's how my brain works.  So I wore that tee under my sweater on the second diavresary of Sugar Bear's diagnosis.  It made sense to me.

So here I sit, two years later, in my quiet before work contemplating where we've come on our journey.  I'm thankful for insulin.  I can't imagine how awful life was for a family before that discovery when two years would have been the max that someone would suffer with this disease.  And the treatment before insulin was starvation and whiskey (to take the pain away).  I count my blessings.  But it doesn't mean I've made best buddies with diabetes.  It doesn't mean it's any easier.  It's just always "new normals".  The Dexcom addition to this journey has eased anxieties, and that's wonderful but we still have worries they just don't make me cry as easily.  I think I've hardened a little to the monster in the room.  My family and I can have conversations of what would we do if one of the boys wasn't waking up or worse when we walk into their room.  We can "joke" about highs and lows.  Both boys are gaining in independence of their own care.  But it's weird to ask "what is your pain level" when their Dexcom has been bumped and is hurting to gauge whether it needs to come out of their body.  It's weird to constantly worry whether the sticky low they're having requires glucagon or a trip to the hospital.  It's odd to be an organ for not just one child but two. 

So I made my annual trip to the Children's Hospital to deliver treat bags for the kids on the third floor, treats to the doctors and nurses in the ER, the PICU, and 3rd floor as well as a special gift to the ER doctor that I consider Sugar Bear's angel.  She's the one that figured out what was going on.  She's the one that gave the diagnosis.  She's the one that held me as I weeped.  I'll never forget.  Because before her we'd had two misdiagnoses that could have cost him his life.  Because of her, he's here.

No, it's not easier but we know how to live and that makes it special.