Grace's blood work was surprisingly good today. It took nearly half the appointment before the result was in so I sat there in a panic wondering if they tell the really bad patients at the end of the appointment. Or something like that. I get irrational when stressed. Grace had a 7.1 on her A1C. We both got an immediate high five from the doc. Our goal from the last appointment was to eliminate a lot of dangerous low blood sugars she had been experiencing and we did just that. Our doctor was really, really happy with the score.
They have this nifty program where they download all the numbers from your blood sugar meter. I was saying how frustrated I was trying to figure out what the heck was going on. He took one look at the data and started nodding and wincing and tilting his head in a way that gave me the "oh crap" feeling. He said the numbers told him that the honeymoon was over. I absolutely knew this was coming but there is still something so awful about hearing a major organ in your child's body has given up. The doctor nodded sympathetically as he told me but I kept it together in front of Grace. I guess maybe it's the finality of it. And I guess a lot of parents get upset given the way he delivered the news.
And then we discussed Disney and everything changed. The doctor was excited and his boss (the head of the practice) is a big Disney guy. When we reviewed Grace's case Dr. W. was raving about all the rides we need to hit and told us to avoid others based on lines but then caught himself. He shared (and I already knew) that Disney makes accommodations for kids like Grace. Not necessarily a "go to the head of the line" but a special priority when getting on rides. I said I felt a little bit bad about taking advantage of this because we emphasize all the time "You are just like the other kids." Dr. W. (who is not known for his bedside manner) told me to stop being ridiculous. To remember every sleepless night we've had. Every cry over a scary low sugar. The anger and frustration of all of this. "Put you and your family in the front of the line. It's what Walt wanted. You all deserve some fun." I laughed and then took a deep breath so I wouldn't cry in front of Grace.
I find these appointments incredibly emotionally exhausting. I stress for days ahead of time over the blood work score wondering if I'm doing everything I can to manage this beast. I stress going into CHOP and seeing all the other families with their own struggles. I told our doctor this and he just kept reinforcing what a great job we're doing and to try and relax a little. "You got this" was what he repeated over and over. I wonder if that self doubt dissipates over time. Do you get increasingly confident that "you've got this." Or is the stress a constant-something that never really goes away? I do know I won't let it in next week at Disney. The doctor explicitly told Grace to eat plenty of sweet treats and have fun. And to treat mom to an ice cream. I think Grace and I will seek out the biggest ice cream sundae we can find and celebrate all our hard work:)