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:)

Making a Connection

The kids do this funny thing at school called "making a connection." Instead of the whole class screaming "ME TOO" or "I HAVE THAT" the kids make a silent sign that looks a lot like a surfer's "hang loose." Luke does this all the time at meals. It's fun to try and guess the connection.

Over the weekend I took the kids Christmas shopping. Each year I organize friends and family and we adopt a Breathing Room Family. The Breathing Room is a local charity that helps families with a loved one going through cancer treatment. Not only is it hard for people to shop when they don't feel well, but also families struggle with heavy financial burdens.

We were shopping for boys ages 8 and 5. The kids LOVE to do the shopping and we were plowing our way through Five Below when Grace announced her sugar was low. The store was mobbed so I said let's take a break and head back to the car to do the check. Grace was INSISTENT this would not interrupt our shopping so we set up by the giant ball bins. She dribbled a basketball while I did the check. People shoot you the weirdest looks in public when they spot you doing a check. Admittedly, it is kind of a process: opening the kit, swabbing Grace's finger, getting the meter ready, lancet ready, sticking, bleeding, etc. Two moms gave me the "WTH" look and I shot them an icy stare. I know they don't know what's going on but seriously-mind your business. We always emphasize with Grace there is nothing to be embarrassed about.

After Five Below we went to Costco. I got the kids some food and realized I had forgotten napkins. I told Grace to check her sugar and I'd be back. When I returned Luke said in a whisper, "That lady over there was checking her sugar and she has a pen needle like Grace's." I looked up to see who he was pointing to and there was this little old lady who looked me in the eye and gave me a wave. I felt like we were in a secret club. We didn't talk but the smiles we exchanged were enough. We had made a connection.

Shoes Dropping

I was out for a run on Friday morning and it occurred to me that I had not updated the blog in a while. I was thinking about how I should update it even when things are going well because I don't want to give the impression that all we do is move from one crisis to the next. It's actually far from that. Most days are "normal" days around here. They certainly don't look normal to anyone else but blood sugar checks and insulin sticks have become incorporated into our daily routine. I don't think it will ever actually feel normal but we've accepted it.

While I was running I started to write the blog post in my head. I do this a fair amount. I write introductions to papers, blog entries, responses to student questions. I was going to title the entry, "Waiting for the Other Shoe to Drop" because it's been a while since since there was a bump on the road. Grace has successfully dodged any number of bugs, insurance is moving smoothly along, and we're all in a decent place with all this. I thought it was important to share this with everyone.

And then the school nurse called, "Grace has had a severe hypoglycemic episode." Thank goodness she also spit out "She's fine." I'm not sure if it was the seriousness of her voice or the fact that I was just about to pen a piece on how well we were doing, but it completely stunned me. The nurse explained Grace bottomed out at 43 in music class. I've seen Grace at 43 and it's not pretty: shaky, pale, lethargic, slightly incoherent. There's two pieces of good news in this. One, the system worked like it's supposed to. Grace felt awful, told her music teacher who immediately called the nurse, who, after hearing Grace couldn't walk to the office, immediately responded with juice and her test kit. Two juices later and a bag of pretzels and she was out playing at recess like nothing ever happened. Two: I know what happened. I hate the scary lows when you have no idea what triggered it. But I know exactly what happened. It was one stupid banana. We use a book to calculate carbs and I swore the number was too high for the banana I gave Grace for a snack. Ends up it was way off for it to bring her sugar down so low.

The rest of the day I was in a fog. I was supposed to be geting materials together for next semester and instead found myself worried, unable to concentrate, wanting to hug my girl. The nurse called a few times to let me know Grace was perfectly fine. I decided to give up on the day and read a book instead. After school I asked Grace about what happened and it was all very routine if not slightly comical to her. The school nurse running, all the extra juice-- an insulin free bag of pretzels! Of course I didn't think it was funny but I rolled with it. I make it a point to never let Grace see how upset I get when stuff like this happens. I save that for Tom. But again, Grace rebounded just fine. To her it was just another kooky day and she giggled when she told me maybe we should lay off the bananas for a while. So I smiled and she smiled and we just chalked it up to another day in the world of diabetes management.

Thankful

This time of year is all about being thankful. This could easily turn into a post about how I'm thankful for all the great doctors and staff and CHOP or how we have a roof over our heads and food on our table. Perspective is a good thing. But this post is slightly different.

Lately, I've been thankful I realized my breaking point and have done something about it. As I've said time and again, diabetes management is a 24/7 operation. We don't get a break around here. There is no taking it easy or "let's just take a few hours off." The stress and the worry weigh on you in a way that is almost impossible to capture in words. There isn't a moment I'm not worried. A constant knot has set up shop in my stomach.

About 3 weeks ago I snapped. Grace had a bad day of lows and went to bed low. After I tucked her in and explained I had to check in with her every few hours, I just collapsed into Tom's arms. I sobbed and sobbed and sobbed. We both agreed it was time to page the doctor and I prayed and prayed and prayed our doc would be on call. And when it was our doc and I heard his sweet southern draw, I sobbed and sobbed and sobbed some more. Long story short, Grace was fine but I was not.

And so I decided to make some changes. Running to me is always the perfect analogy here. You can't treat diabetes like you're in a constant training cycle or you'll burn out. I burned out. But then again, I've always been known to go out too fast. Something had to give. I decided each day I would do something just for me. And so here is what I am thankful for:

Walking the dog. Something so simple as taking Shelby for a short walk clears my head and leaves me just plain happy. She pushes her nose through the leaves, flicks my hand as we walk as if to say "HEY JEN ISN'T THIS AWESOME!" (Shelby always speaks in caps). And sometimes I run into a neighbor or friend. Walking is a good thing.

Running. I stopped running right after Grace was diagnosed. So did Tom. I simply did not have the energy for it. Now I'm back. Not every day. Not every week. But the great thing about running is it's always there for you. Shoes just sitting there waiting to go. I'm not training for anything. The goal is to get out the door. Sometimes it happens, sometimes it doesn't and that's ok.

Reading. I found myself watching a lot of idiot TV. Idiot TV is ok in limited doses but I found myself just staring and not even really enjoying the dumbness on the screen. I bought myself an inexpensive Kindle so I never have an excuse not to read a good book at the end of the day. This was a bit of an indulgence but I'm so glad I got one.

Church. I was raised Catholic but have fallen away from the Church for a variety of reasons. My house teaches tolerance and while we have not gone to church with the kids, I have always made a point to discuss Jesus and the importance of living his philosophy. I've started attending our local Presbyterian Church with the kids. I'm not all there with the savior stuff but I am there with the principle of "sometimes you just need to let it go and have faith things will be ok." It's an hour of peacefulness on Sunday morning that leaves me recharged.

Food and wine. I should just leave it at that. Food and wine are good things! I was going down a bad road of not eating well, of dodging meals and snacks, and then eating crappy food (Halloween didn't help). But now I'm back on track. I'm largely eating a vegan diet before dinner and thinking about what food I need to get it through my stressful days. I've also decided good wine is a must. The little treat of a nice bottle of wine makes me so very happy at 8pm.

My relationship with Tom. I adore my husband. One of the reasons I adore him so much, is he puts up with my lunatic ways. No matter how stressed or upset I am, he is my rock. Of course he gets upset and stressed too, but expresses it much differently. Once Thanksgiving passes I am taking up one of our babysitter's offers to get us out of the house regularly. Annie is a sweetheart and said she knows how stressful this all is and wants to help. In a giant step forward, I am letting her help us. Once a week is date night out. A cup of coffee, browsing the book store, a beer and sandwich--Tom and I need this time to recharge.

Friends. Social media has been wonderful. Diabetes management can be damn lonely. I know when I have a bad day, I can throw something up on facebook or twitter and someone will respond. I also know that when I post something my sister Meghan and my friend Joanne will text me until they know all is ok with Grace. That support means everything. When Grace is having a bad day and my phone is buzzing with texts, it just eases that loneliness.

Writing. I'm thankful I decided to commit all this to "paper." Sharing our experiences has been cathartic for me. To have a place where I can "dump" all this stuff is such a relief. Thank you for reading and giving me an audience.

Transitioning

Last week we experienced something new in the world of diabetes management. On Monday, after my class, my throat was really sore but I figured I was pretty chatty for 2 hours and thought nothing more of it. I sucked down some wine and cheeze its and figured that nutritional powerhouse would work its magic. Tuesday I woke up with a full blown headache and swollen glands. I don't really care when I get sick. I've never been one of those people to shut everything down for a day or two while I recover. The thing that scared me, was Grace going to get this?

When diabetics get sick, all kinds of wacky things can happen. Sugars can go high and low and it's very unpredictable. Diabetics can also produce something called ketones which are bad, bad news. Ketones are what your body produces when it can't access carbohydrates and your body starts burning fat. Ketones are detected by a urine test and come in all kinds of fabulous sizes: trace, small, medium, large. You can consult your handy dandy color chart to see what you've got.

Grace never got sick but she did fight it off. Even when diabetics fight off an infection, blood sugars can be whacked and ketones can show up even if your blood sugar is where it's supposed to be. So we spent the week checking urine pretty much every 2 hours and keeping a close eye on Grace's numbers. I exchanged a ridiculous amount of phone calls with the school nurse and our CHOP people to keep things in check. All things considered, we survived unscathed and it seems like this may have been a good warm up for when Grace actually gets nailed with something. I've committed my sick day insulin and fluid rules to memory and feel like I can handle it (kind of).

But I think all the flurry of worry last week left a mark on Grace who was really sad last night. She told me she was scared diabetes was going to change who she is. When I hear stuff like this, I feel like I've been sucker punched. But we're working on something new in her therapy--moving on from mourning. For kids Grace's age, who have a memory of life before diabetes, the process of acceptance is particularly challenging. Essentially Grace is in mourning--experiencing a sadness for the loss of her previous self. To help Grace move on from mourning, we have to help her focus on acceptance.

I find this part particularly difficult. I just want to sweep her into my arms and squeeze her tight and we can have a big cry fest together. But this doesn't move us forward. So, instead, I nonchalantly said, "Asthma has never changed who I am." Grace balked at the comparison but I moved on casually putting plates away and talking about my life with asthma. I compared her pancreas to my lungs-both don't work the way we want them to. I take medicine every day, she takes medicine every day. Sometimes diabetes and asthma can be scary. I wish I never had asthma as much as Grace wishes she never had diabetes.

I didn't want to draw too close of a line between the two because, in many ways, we're talking about apples and oranges. Yes, I do use an inhaler every day and carry a rescue inhaler with me. Yes, I totally wish I never had asthma (especially in allergy season). Yes, sometimes asthma really does scare me. But, I emphasized to her, it has never, ever changed who I am. I spoke about a few athletes who have diabetes and how it never slowed them down-professional hockey players, baseball players, and swimmers. As much as I wanted to scoop her up and squeeze her pain away, I didn't. I looked her right in the eyes and said "This will never, ever change who you are."

But of course, the great unsaid in all of this, is it will change Grace. Grace has already changed. She has demonstrated a courage that few adults could channel. She is stronger than who she used to be. She just doesn't realize that but she will some day. I think there are parents out there who try to do everything in their power to protect their children from their hurts. And I respect that. When I know Grace's sugar has gone low in a soccer game, it's my first instinct to pluck her out of there. But I don't. I want to give Grace the tools to handle the frustrations of this thing and to rise above it.

Initially I felt bad speaking to her in a way that was firm and unyielding. But at the end of the conversation she had stopped crying and was listening carefully. I refused to give any ground on her "buts" and eventually she was quiet--annoyed--but quiet. After we talked, I realized how important it is to have these conversations and to not go back to the comforting place of mourning. It's time we all moved on and a little discomfort is probably a good thing.

A Day in the Life

Today kicks off Diabetes Awareness Month and the JDRF has asked families affected by diabetes to take to the media to share their experiences with this disease. Unless you've spent some pretty serious time with us, most people don't really understand what goes into managing this beast. By "beast" I mean diabetes, of course:) I've lost count of the number of people, who, I'm sure, were well-intentioned, have said things like "Diabetes is a very manageable disease," or "Before you know it, you'll have the hang of this thing and life will get back to normal." I thought I would post a "day in the life" to give you a sense of what life with diabetes is like for us and Grace not so that you feel bad for us but, to get a sense of what families go through to give their kids any shot at "normalcy."

7am: I start making lunches. I count the carbohydrates in each item and place stickie notes on Grace's food so the school nurse knows how much insulin to give. Fruit is annoying because you need to weigh it and look up the carbs. I do but it slows me down trying to get breakfast on the table.

7:30am: Breakfast. Grace has a low carb b-fast b/c she runs high in the midmorning. I make an egg white omelet, toast, juice. Grace checks her blood sugar and we play a round of "guess what my sugar is!" I count the carbs and inject Grace with insulin. In the meantime the dog needs to go out. Luke can't find his socks, Tom lost his wallet and Grace is spazzing over the insulin. I let her know I hit her morning high sugar pretty hard with insulin-go right to the nurse if you feel low. I hope to myself I didn't hit it too hard.

8am: The kids head off to school and I head out for a run. I'm thankful for no call from the nurse while I ran. I was able to inhale, exhale, repeat for 45 minutes.

9am: Back at my desk I realize I haven't received paperwork from CHOP to complete our supplemental insurance application. Call CHOP and wait and wait and wait. Eventually decide email is easier.

10am: Look at supplies and realize I need to place an order for test strips and lancets. Call to place the order but have to wait 10 minutes on hold.

10:15am: School nurse calls. Grace is high again in the morning but tested negative for ketones. I'm relieved but annoyed. Can't get that number down but at least I didn't overdose on the insulin.

11:00am: Plug all Grace's blood sugar numbers into glucose buddy and attempt to figure out what doses need to be adjusted. Midmorning highs, lunchtime lows. Need to call the school nurse to discuss.

12:00 Nurse calls. Grace went low right before lunch. A low blood sugar is no good. No good at all. She at least took a juice from her desk while a teacher walked her to the office. She got scared because she was so shaky. Nurse lets me know she's ok but all I want to do is pick her up. Decide Grace would hate me forever for doing that so, instead, I fight back tears, take a deep breadth, and throw in a load of laundry. Curse diabetes under my breadth.

2:30 Walk up to school to pick the kids up. Relieved when Grace runs out happy to see me and no impromptu visit with the nurse to discuss the numbers.

3:30 Grace tests her blood sugar while I review her numbers for the day. We pick out a snack and I give a shot of insulin. I note the time because I can't get another "good number" before 5:30. Plan dinner for sometime after then.

4:00 Homework time. Grace is a crank, Is it because her sugar is low? High? Or she's just a crank. I go with a "crank."

5:30 Grace comes into the kitchen asking for a juice certain she is low. I always try and stay calm even when I see her pale, panicky face. Grab a chair for her, stop making dinner, grab a juice. At the last minute I remember to turn the burner down thus saving dinner. She settles on the sofa for a show. I can't see her face, only her back, so I check a few times to make sure she is alert and ok.

6:00 I count all the carbs in Grace's dinner and give her a dose of insulin. Grace only eats half of her dinner (not hungry on this night). I do a quick count and realize I have a deficit of 30 carbs I need to make up or her blood sugar will bottom out. I opt for another juice and fruit chewies.

7:30 Bath and bedtime. Before bed Grace checks her sugar. It needs to be over 100 before bed. We're at 100 on the nose. Rather than risk her going low in the night, we give a glucose tablet to bring it up some but not rocket it over 200.

8:00 Grace is in bed.

The day is over. Rest. Begin the same routine again tomorrow.