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.

Seeing the Future

When Thomas was admitted to Children's Hospital almost a year ago, the constant message from the doctors, nurses, social workers, and child life staff was "you can do it." A large team of (very-well paid) cheerleaders, the CH crew made it their goal to drive home the message that life with diabetes was manageable, even swell.

Part of this, I'm sure, is survival on their part. There is a lot that parents (and children) need to absorb in a short time. In order to confer the most basic and important information, and be sure it sticks, the staff needs to focus on it and only it. The checklist is out during every meeting, and the staff is slowly but surely checking off all the requisite skills: drawing up insulin - check; treating a low - check; counting carbs - check; planning a meal - check; and the list goes on an on. There is just not time enough in the three or four days to dwell on anything but the necessary, and in order to do that, they need to keep parents in an up-beat "you can do it" frame of mind.

But even with all the cheerleading, the concerns creep in. At first, my concerns fell into one of two categories - self-centered or Thomas centered. Will we be able to eat out? Will we be able to leave Thomas with a sitter? Will he be able to play at his friend's houses? Will I have to quit my job. The worrying was endless, but it was all about our lives at the time.

Now, though, almost one year later, my worries have grown to those topics that were pointedly avoided at Children's: the life-long complications that diabetes carries with it. Although no doctor has laid the "risks" of type 1 out for us, it has become clear that there is not a part of TJ's body that is not open to the devastation that D can bring with it. Dentist appointments and check-ups - previously a nagging but minor concern - are now at the front of my mind. Diabetes advertisements that were background noise before are now red flags. The ubiquitous "ED" ads that once made me blush now remind me that if, in fact, I don't keep those numbers under control the consequences will resonate in every part of TJ's adult life (even the parts I would otherwise choose not to think about.) "Will he be able to go over a friend's house" has been replaced by "Will he see his grandchildren?"

In reality, none of us can see the future for our children. There are many tragic endings all parents avoid thinking about. Will diabetes ultimately get the better of Thomas, or will there be a cure in 15 years. No one knows. Each high or low number on the meter (heck, each test on the meter) stands as a reminder that we might not be doing enough to keep these complications at bay. But, today, almost one year in, Thomas is a healthy, happy boy who happens to have diabetes. And that is as far into the future as I can see.