T1D also looks like this

Type 1 isn't just all needles and test strips.  But I am thinking about it every second of every day.  Luckily, this sweet boy hopefully is not.  For now I can bear his burden. For now I thank God that I can bear his burden or at least part of it. While this trip to Bush Park looks lovely in pictures and of course that is real joy on our faces so in that moment it was lovely but there is always a part of myself that is waiting and prepping for the next diabetic chore.  It might be as simple as making sure he is continuing to drink water (you get behind on that and you will start to see the dark circles under his eyes, I am forever trying to interpret the color of his skin, the look in his eye, the depth of the circles around them.)

Or maybe after that rough and tumble in the leaves he burned to many carbs and needs a couple chocolate kisses to pick him back up.  In fact about 20 minutes after these pictures were taken he starting wanting to lay on the ground.  Red flag.  Low or dropping fast. So, chocolate kisses are given.  You guess at the right amount.  You're wrong and an hour later he is 340.  Great.  The yoyo. 

Or maybe you didn't double check your syringes so when its time to eat while you are out trying to have a fun family adventure you have one syringe left.  Don't mess it up! This is your only chance to get it right! That might be the end of the world if you screw this up. That's how everything feels. So life and death. And I guess that's because it's true. Not every single decision but all of them put together keep him alive. And yes when it comes to the correct amount of insulin, it is life or death. The insulin that gives him life could easily snatch it away.

Now, the balance. Trying to be in the moment as we play in the leaves, finding the joy, setting aside the diabetes. It'll be OK for five minutes, it'll be OK for 10 minutes, just rest, just relax, just laugh and smile at your boys. 

oceansart_t1dlife_fall

oceansart_sillymom

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T1D looks like this

7 months of insulin syringes...average 6 per day  

1/4 of a unit of insulin

4 months of test strips...10-12 per day

Stormy joy

We had a little storm here in Oregon a week or two ago. It was supposedly going to be the Big Wind Storm of 2016. Not quite as intense as they thought but super fun to watch out our front Hobbit door. I think one of the biggest struggles here in this new diabetic life is how to continue to enjoy the small things. Every second of the day my mind is filled with how to keep Ocean in the best health possible. As I think about that I'm also thinking about his future. Because of course any damage that may be done here as a toddler will greatly affect him as an adult. Consistent high blood sugars cause damage to the organs and resistance to insulin and obviously create a difficult time of being healthy with T1D as an adult. So each day I wake up and immediately worry about his ketone levels, his BG levels. Hopefully his BG has been in range during the night, but that only seems to happen about 50% of the time at this point 7 months post diagnosis. I'm sure that will get better but he is so sensitive to carbs and insulin. Just a tiny bit of each can make a big difference. And then throughout the day I try to figure out how to constantly be giving him water to flush out the ketones and figure out what in the hell he will actually eat so that I can give him insulin. Never mind the underlying feelings of guilt, fear and anxiety that is always there. Some days when we try to have an adventure it's a disaster. Nothing goes right with the diabetes, nothing goes right with the weather, nothing goes right with my anxiety. And then some days when we keep it simple and we pretend to be Tarzan as we watch the storm from our Hobbit front door, we are joyful. Let's pray for more simple joyful days.