Saturday, October 6, 2007

Counting the days...

On Thursday Daniel and I will go back to Children's Hospital to take our basal/bolus class. We'll walk away with our prescription for the pen, and will be off the N and R routine, with its tight schedules and specific carb requirements for meals. Yay! In so many ways it will make life easier.

Back in May when he was diagnosed, I felt like my heart just cracked into pieces. In June the nurses wanted to do a second set of labs on his thyroid and celiac tests, because both of those labs showed elevated levels from when he was first brought into the hospital. When the nurses explained all the "what-ifs" to me (elevated thryoid levels would require a pill every day... elevated celiac would require an endoscopy and, ultimately, a complete change in diet) I prayed, "NO CELIAC! PLEASE!"

That prayer was not answered. Or, as some people note, it was answered with a "no." Hmph.

But you know what? We're making it through every day. Daniel, as I have said before, is an incredible inspiration to me. He is so nonchalant about his routine, and the only time I've seen him truly frustrated is when he pricks his finger two or three times and it's just NOT bleeding that day, even one drop, to get his bg tested. When I think of the things he used to eat and love -- pumpkin muffins, fettucini alfredo, kudos bars, cinnamon buns, and then the fun things like going to a fall festival and stopping by the bake sale booth -- that's the kind of thing that still makes me ache inside for him. However, if he's feeling upset about missing out on these things, he's not showing it. He asks if foods are gluten free, and if they are not, he shrugs his shoulders and says, "oh well, not for me." And he finds what he can have.

I tend to fixate on the gluten-free thing, because it affects so much of what we do. No school lunches, packing food for play dates & other functions, carrying our own treats to birthday parties. It's tough. But I think a lesson to be learned, or at least one that I'm trying to pound into my own brain, is that it is important to focus on the pleasures in life that have nothing to do with food. Time spent talking to friends, exploring new places, disappearing into a wonderful book. Delicious phone calls with best friends, venting and laughing. Moments at the beach in winter, staring at the wild and windy landscape, feeling both incredibly tiny, yet organically attached to the enormous, beautiful world around you. Living in the moment is its own kind of meditation!

And now, back in the real world, I'm going to plan for this weekend and the week ahead. Daniel, a freshman, has been nominated (by whom? we don't know) for Homecoming Duke. You have to be a senior to be King. Ahem. We all know are kids are special. But hey folks... mine could soon be royalty! So we have to go see if his suit fits. And get a tie. And get tickets to the game.

Isn't that exciting?


Shannon said...

Daniel seems to be such a centered person :) I think it helps when the parents are outwardly centered as well (I say outwardly, because I agonize internally, but don't want that stress to fall on top of Brendon). And Brendon's nonchalance helps me to relax about things.

Good luck to Daniel being voted the Duke!

Naomi said...

The Duke nomination is a cool thing. It set the tone for the weekend (shopping, shopping, shopping). The craziness of it cut through the layers of stress that have been building (job stuff, ugh).

It must be the same for you with Brendon -- when you are uptight about his condition, he can probably calm you with a smile, or a hug, or a simple sentence that shows that HE isn't stressed -- why should you be?