Vacationing

How quickly we settle into vacation. One day in, with Tom headed to Stellwagen in search of tuna, we settled into our slow paced routine of beach, reading, puzzles, and solitaire. I love how much my children were looking forward to Marshfield. The activities - the games, the beach trip - even the exact puzzles - have become a "tradition."

Rope Swinging

There does not seem to be anything that is more quintessentially summer than a rope swing. Pure summer love.

Both Gwen and TJ were so much more brave then I imagined they would be when we arrived at the swinging spot - letting the rope take them far out over the pond over and over.

Just by chance, TJ's cozmo insulin pump is right up front and center in the photos I took of him swinging. On the one hand, I love these photos - pictorial evidence that diabetes never holds him back. On the other hand, they are a reminder - diabetes with him, no matter the day.

30 Days

Many years, the coming on of August causes me to panic. In so many ways I have yet to settle into a summer routine, yet all of a sudden the end is in sight. This summer - one filled with unpredictable weather, a busy work schedule, and a two-week stay away from home - I find myself entering August with a sinking feeling that summer will end and I will not have lived it.

But, in reality, summer is only peaking - there are many days left to be enjoyed. In order to live them just a little more deliberately, and to share them with my children, I challenged each of us to keep a journal for each day in August. The children were each treated to new spiral notebooks and markers to help encourage them and each dutifully filled the first page with color, prose, and drawings detailing our first day of actual away-at-a-beach-house vacation. I promised them I would blog each day this month.

Although the first half of summer has passed by in a (non-documented) flash, the images on my camera tell tales of long, fun-filled days. Rope swings, boat rides, beach excursions. Fun, any way you remember it.

Red Sox

A (long ago, at this point) April vacation trip to Fenway...the first night was rained out, so we ventured to the city again the next day for the make up game. Lots of Fenway franks, and lots of fun. Click on the photo for a full size look.

Be (Kerri's) Guest

I'm SO honored to be hosted as a "guest blogger" today over at my favorite blog, Six Until Me. Kerri has been an inspiration to me since TJ was diagnosed, and I am still in awe that she would share her space with me. Check it out here!

Stuck in a Rut

Thomas had his appointment with our nurse educator Deb last Friday. Both Tom and I were excited for the appointment, because TJ has had what seem like great numbers lately and we were anticipating a fantastic A1C (and what, getting a gold star? I don't know).

The appointment went really well - Deb is pleased with his numbers, pleased with the adjustments we had made ourselves to his insulin/carb ratio and basal rate, pleased in general. We are A+ parents of a diabetic, apparently. (Which is great for me, grade-grubber that I am...) Oh, wait, but what's that....the A1C you ask. Yeah, still 7.9. Still high. Hmmmm....let's recalculate....B-.

Of course, I'm kidding. Joslin doesn't give out grades, and if there were grades in parenting mine would certainly be less than a B- based on lack of bedtime stories read alone. BUT, 7.9, really. We were sure it would be lower.

Deb was quick to let Tom know that 7.9 is a great A1C for a boy who is as active as Thomas. One might not know it from the A1C alone, but we've actually been struggling with lows lately, since TJ has been playing tons of soccer. Deb reminded us that 7.0 - 7.5 would be considered the best range for a sports-nut like TJ, but still....7.9, again?? Couldn't they have just tossed us a 7.7 to keep things interesting, keep our motivation level high?

So...we'll be back at it. Maybe logging, maybe making more adjustments. I might have to actually crack open that copy of Pumping Insulin I ordered from Amazon. But for now, we're in an A1C rut.

Two

Today marks Thomas' two year anniversary with diabetes. Two years of diabetes. Two years of finger sticks, shots, site changes, carb counting, lows, highs, middle of the night wake-ups. Two years of worry, heartache, learning, growing, adjusting.

Two years. Two years that could be two minutes or two thousand years.

It's amazing how this disease can be so much a part of everything, and still a constant question mark, still a steep learning curve.

Too much to say, too many conflicting emotions.

Two.

Letting it Go

Of course, winter has taken over, and blog posting has gone by the wayside. I have been busy, I think. Not sure what, exactly, I have accomplished, but every minute has felt scheduled and my house is NOT clean!

Thomas had a trip to Joslin in December - right before Christmas - and met his new endo. I liked his old endo, but love, love, love his new one. Dr. Ricker is fantastic. She is laid back, funny, and definitely gets it. As I pulled out his log (which of course was downloaded from his pump only for his appointment) and made a comment about all the "yellow" numbers (color coded because they are out of range), she cut me off with a quick "It's not a report card." Thank you Dr. Ricker!

I was nervous about the appointment, particularly the A1c, because he has had many more highs than over the summer, and we are not as quickto adjust highs because we are worried about lows in school. And, although he has seen many more highs since school started back up, his A1c is still 7.9. Still in range, as our nurse educator Deb so kindly reminded me. Is it perfect? Not at all. Is it a great A1c to aspire to? Not really. But it speaks to something new in my diabetes thought process. It is care I am comfortable with for Thomas for now.

Diabetes brings so many added responsibilities, so much extra in general for Thomas, that I hesitate to hover over him every minute and control his every movement. I want him to be able to to go to playdates and run off with neighborhood kids whose parents might not be so aware of diabetes. I want him to join the sledding down the local hill or the pick-up hockey game in the road. I want him to be able to enjoy school without 12 trips to the nurse (the 5 he makes each day are certainly enough, no?). And in order for him to do all those things, I need to know he is not going to go low all the time. And that means taking slightly higher numbers sometimes and living with them.

There are parents out there, I know, who would read this and claim that I am abusing my son by not managing his BG as agressively as possible. There are parents who wonder why I wouldn't push for CGMS to monitor his BG at all times and get his A1c as low as possible. It is, of course, an indicator of how his long term health might be. And, I do worry about managing his numbers and his long term health.

But I think in our house, with our child, we have made a somewhat unspoken agreement to do the best for the now. Thomas lives with the reality of diabetes. He leaves class to check his BG. He stays out of the pool when his friends are swimming because he is low. He doesn't get to go home on the bus to houses where the parents have not been trained in diabetes management. He wears an insulin pump and takes shots and tests his blood sugar all without complaining. If an A1c of 7.9 allows him a somewhat 'normal' childhood, and generally good health, too, than I will take it. For now.