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.

JDRF Walk

On Sunday "Team Grace" descended on West River Drive in Philadelphia for our first JDRF Walk. I had heard about the walk soon after Grace was diagnosed. With so much going on and us still reeling from the diagnosis, I wrote it off as something we would do down the road. The idea of walking with a bunch of other diabetic families didn't really sound like my idea of fun.

But then the thing kept kicking around my head. I became increasingly aware of the JDRF and all the work they do to help families like ours and I began to consider it. I looked on line and saw pictures of happy people. No one was sobbing or mourning. In fact, it looked like a really good time. So I committed just us to the walk.

I was nervous over how Grace would handle the idea of the walk. Sometimes she really pushes back against any dialogue concerning diabetes. I was relieved when she was really receptive to the idea and eager to do some fundraising. So we began to take baby steps and started having fun with it. When I mentioned it to people, they eagerly volunteered to be a part of our team. And things grew from there. It gave Grace and I something to look forward to. We talked about t-shirts, fundraising plans, and a pretzel sale. It gave Grace the chance to talk to her classmates for a whole 45 minutes about what life with diabetes is like. The Walk got us thinking a different way about diabetes and, while I'm sure Grace couldn't articulate this, it was empowering.

I had heard from a number of families that your first walk can be overwhelming--"be prepared" was their mantra. I was prepared for an emotional day but it never really turned into that. Tom had a moment when he needed to take a breadth but then the day moved on and all was ok. I was blown away by just how many people were there. We were surrounded by a sea of teams in t-shirts all anxious to do something to help a family going through this.

Grace seemed to have a really good time. She embraced the walk as she held hands with her best friend since she was two. Hand-in-hand they walked followed by Team Grace on a beautiful fall day. She smiled her beautiful smile--especially when her Pops called her "princess." She laughed her silly laugh at her goofy cousins, pointed to awesome t-shirts, and soaked in the love Team Grace had to offer. It wasn't sad to me at all. It was beautiful.

I thought about how many times I had been on that very part of West River Drive for a race and how it hurt, always hurt, at that point in the race-begging to be done hurt-- and how different this "race" was. It hurts but in such a different way. I'm begging to be done but there is no finish. The Walk made me anxious to get back to racing with this new perspective. Diabetes has taken me to a different place in my life where words like "stamina" and "endurance" have taken on a whole new meaning. But when I looked around at our support team, I think it really hit me that we are not alone. Not only were we surrounded by thousands of people who had somehow been touched by this disease but also by our family and friends who have had our backs the whole time. Thanks to everyone who made the day so very special and who continue to support us. Team Grace is taking it to the next level in 2012-stay tuned!

Oh What A Week

Sorry I haven't updated in a while. It's been an exhausting week of fighting with the insurance company.

Here's what's been going on:

At our last doctor's visit, we discussed the idea of ditching the syringes in favor of the "pen system." Grace receives at least 6 shots of insulin a day. While she's doing better with the insulin, the pen makes it a little less painful and much more efficient. Know what stinks? Being out in public trying to use a syringe to draw an insulin shot. We usually do it in the bathroom (yuck) or the car, or, people just stare at me and wonder what the heck we're doing.

The pen is preloaded insulin. It looks like a pen with a twisty knob at the bottom. You twist the knob to the dose you need and you're ready to go. No drawing up a syringe and much more discreet. Originally, the pharmacy filled the script, no problem. We used it 2x and it went well. But then the next day we realized it didn't have half unit doses (which we need). When we went to get a different pen, the insurance company denied us. Our office has called repeatedly and each time insurance says "no." We are now taking up the issue with Tom's benefits manager. This is flat-out exhausting. Each day is filled with new people to call, more information to retrieve from people who never answer the phones, etc. I've had it.

In better news, Grace is making wonderful progress in therapy. We had a few rough times of sobbing and crying. She frequently asks why won't it go away, I don't understand why my body is doing this, and the "it's just not fair" statement. It's heartbreaking. No way of getting around it. In therapy we've been working with the idea of getting Grace to "own" her diabetes. The upcoming JDRF Walk has helped with this. We went door-to-door on Sunday collecting donations and a few times she actually spit out "I have diabetes." Then at school yesterday, she spoke to her whole class about life with diabetes. The kids were making posters for her pretzel sale and lots of them had questions about diabetes. With her teacher's help, Grace explained what diabetes is and answered all kinds of questions from her classmates.

When Grace told me what she had done, I was stunned. I tried to not make a big deal out of it because she's starting to be of that age where any reaction from me is really annoying. So I played it cool, high fived, and moved on. The relief I felt inside was simply overwhelming. Our therapist said progress would come quickly but, wow. I think Grace still struggles with her diagnosis but it's only been since July and we know it will take time. But this is an excellent sign that she is moving forward.

Speaking of moving forward, we have the JDRF Walk this Sunday. "Team Grace" is hitting West River Drive and we're tickled to have raised almost $1300. I'm excited for Grace to see all the families out there dealing with the same stuff we are. I know she must feel lonely so to see other kids *just like her* is something so important. I also think it will be an emotional day for us. Honestly, I feel pretty lonely and isolated. Diabetes management is something that takes over your life. If you're not on the phone dealing with some problem or another or filling out paperwork and talking throughout the day to the school nurse, you're planning meals, counting carbs, evaluating supplies, studying numbers, talking to the school nurse again. It has essentially become my full time job. I think it is also important for *me* to see how many moms and dads are sharing the same struggles. Note to self: no eye makeup on Sunday.

If you're a part of Team Grace, you have no idea how much it means to us that you have committed to walking with Grace and our family. Seriously. I feel like we have an army behind us. If you can't be there (many of you have other commitments or geography in your way), we know you are with us in spirit! I'll try and snap lots of pictures from the day and post next week. Hopefully we'll also have some good news from the insurance company. Thanks for everyone's continued support and prayers and intentions. They are very much appreciated!

Inhale. Exhale. Repeat.

This was one busy week for us at CHOP. On Monday we had our visit with Grace's therapist and on Thursday we had an appointment with Dr. G. Both appointments went so well. I swear I'm sleeping much better.

On Monday, we continued discussing how we can best help Grace accept her diagnosis. Grace played with a social worker while Tom and I talked strategy. We struggle the most in two areas: Grace's grumpiness and cranky behavior when she has a high blood sugar and taking an insulin shot in a reasonable amount of time. When Grace's sugar runs high, she is very emotional and irritable. In the past, I've treated this as a strictly behavioral issue. Simply put, it's behavior I find unacceptable. When discussing this, our therapist suggested a different approach. If Grace wants to crawl into my arms and have me hold her, I should do it. If Grace needs me to drop everything I'm doing to give her the attention she is demanding, I should do it. Some behaviors though, are just unacceptable. Hitting, being mean, rudeness, nastiness-not to be tolerated. We should also be sure we are using these moments to help her figure out how she feels when she is high, so she can tell us.

The other strategy we discussed was how to make insulin go more smoothly. Grace had been creating increasingly complicated rituals to put off getting her insulin. She needed her blanket, something to squeeze, a dog, a cat, another cat, Luke to make a funny face. It was taking upwards of 10 minutes to get her settled for a shot. Of course prolonging the inevitable was making her more and more anxious and were caught in a vicious cycle. Our therapist suggested a sticker reward chart. If she sits down and takes a shot quickly, she gets a sticker for her chart. Insulin should be like flossing--a little uncomfortable but something we need to do. I was floored how quickly Grace took the system. I'm looking at a wall of stickers in my kitchen. For now, problem solved.

On Thursday we got great news at the doctors. Grace's A1C blood test was fantastic. The test monitors progress overs a 3-month period in how we are managing the diabetes. The doctor *hopes* for around a 7. We came in at 6.1. The doctor's smile was HUGE--he was positively giddy with that number. The only thing we need to do differently is deal with Grace's lows. Recently, Grace has had a lot of lows. Practically every afternoon and before bed she goes low. So we're going to adjust her long-last insulin (levemir) and see if that helps.

Grace told me she likes Dr. G because he's so nice to kids. I like Dr. G because he's so nice to kids and freakin' smart. He and his practice took us from an A1C test score of over 14 to a 6.1. He commented that we've reached the part where we are controlling the diabetes rather than it controlling us. I do feel we've made that transition and while all the bumps have not nearly gone away, we are settling into some sense of normalcy.