Community

I could go on and on about our trip to Disney but I'll keep it brief. We all had a really amazing time and it was so fun to watch the kids experience the rides, characters, and food. Grace's numbers were surprisingly good. We hovered in the low 200s and avoided ketones. We had one bad low sugar that left Grace extremely shaky but Tom swooped her into his arms and we rushed off to First Aid. Their staff was great. We just explained the situation and they asked if we needed a meter or juice (we didn't). Then they offered Grace a bed to rest while her number came up. And that was it. No checking in, no paperwork-they left us alone which is exactly what I wanted.

I mentioned this on Facebook but wanted to return to the sweet encounter we had with another diabetic girl. I carry our JDRF backpack because it has an insulated pocket for insulin if it's too hot. On our way out of the Animal Kingdom I heard this little voice say, "Excuse me? Does someone in your family have diabetes?" We turned around and there was the sweetest girl-about 10-with cute red, curly hair. She and Grace hit it off like they were eternal best friends. Lily's mom assured us it does get better and Lily was proud to show off her "Pod" insulin pump. She also told Grace all about diabetes camp and what fun it is to meet lots of other kids just like her.

I was so struck by this encounter for a number of reasons. One-practically every kid we meet with diabetes is amazingly articulate about their condition. Lily had no fear of approaching us, breaking down how you use the pod pump, and all the cool things her remote did. She was nothing short of an advocate for diabetes normalcy. She was just oozing, "HEY-you're just like ME!" And Grace beamed. Grace repeatedly asked if Lily stayed at our hotel and how great it would be to see her again.

Pushing into the new year it's become very clear to me that as important as my diabetes community is, Grace needs one, too. We have a few options including a new kids' support group in our area and reaching out to the JDRF. Camp also sounds great but even under the best of conditions, I'm not ready to let Grace go to an overnight camp. This will be open to discussion.

Second, I'm learning just how important community is to the diabetic families we meet. Grace has been increasingly frustrated with the insulin shots. This frustration seems to come and go and we're knee deep in it now. She is *really* fixated on getting an insulin pump. We're totally fine with that. I think we've reached the point where we can push through the classes and tackle this piece of technology (I'll post later on what the pump is, how it works, etc.) But last night was bad at bedtime. Grace had lots of tears and is clearly frustrated and tired of all this nonsense. After I settled her down and swore a solemn pinky promise that we would get the pump, I headed downstairs to find this on our dry erase board in the kitchen:

"I HATE DIABETES."

Grace writes all kind of things on the board. Usually she chooses peace signs, hearts, butterflies, sweet notes to me. I swear this one shook me hard. I was still thinking about it when I looked at my messages and saw I had one from a mom who has a young son with type 1. She needed to vent. It had been a rough night. Her son, too, was just tired of the whole thing. Grace was crying because she wants a pump. Her little guy was tired of the pump. I've never actually met Alyssa in person. We were introduced by a mutual friend. But the great thing about this community is you don't need to actually meet that person face-to-face. You just need to know someone is there to listen. Not to judge. Just a set of understanding ears.

Reaching out is such a huge part of the support network. None of us is superhuman. Somewhere out there, there is a parent and child having a rough diabetes day. Last night that was me and Alyssa and my friend Lisa. Lisa's son is currently at CHOP dealing with high blood sugar and a confusing diagnosis of pneumonia/asthma. I know she was having a rough night. I had a rough morning with Grace's low blood sugar and her reluctance to let go of my hug to head back to class. When you share these stories with people in the community they nod because they know. This is not to say those of you who don't have a diabetic child don't know. But it's that connection thing I wrote about last month. The connection is huge and it's what helps us all survive day to day.

Honeymoons and Vacations

We had Grace's 3 month check up today and I was dreading the blood work. December completely sucked. Her numbers were ridiculously high and I felt like I spent my days chasing ghosts. We adjusted her nighttime insulin, her carb ratios and then I began to notice how much insulin we were going through. In the back of my head I wondered if our "honeymoon" was over. The honeymoon period is when the diabetic's pancreas still produces some insulin. Eventually the pancreas tires of the relentless attacks and stops producing insulin. I wasn't sure if Grace's highs were a function of all the sweet Christmass goodies or the honeymoon ending. Ends up it's the honeymoon.

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:)