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.

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.

New Friends

This week we added a new member to our diabetes management team. So far (if you like to keep track of the players), we have our doctor, nutritionist, case worker, and pediatrician. Monday we added a therapist to the team.

Since Grace was diagnosed, we've been trying to get her in to talk to somebody about her frustrations, sadness, and anger. Grace simply won't talk about her diabetes-not with me, Tom-anyone. I've tried so many different methods to get her to open up about it without any success. I know she's mad. That much is obvious. No one is allowed to tell anyone Grace has diabetes except Grace. If you cross that line, she flips out-crying, yelling, hitting. I know she has so much stuck inside of her. She just doesn't have the tools to let it out.

About two weeks ago I gave a bedtime insulin shot that went bad. I have no idea what happened but Grace started sobbing. This isn't unusual. The shots usually bring some tears. But this time it didn't stop. She sobbed and sobbed and sobbed. She screamed how much she hated diabetes. She screamed she wanted it to go away. She screamed it wasn't fair. For a half an hour she sobbed and screamed in my arms. I can fix a low a blood sugar. I can usually fix a high blood sugar. But this is something I can't fix. I tried to hold it in but then figured, what the hell, if there is sobbing to be had, I'm in. So we sobbed together.

We finally got an appointment to meet a therapist yesterday. I told Grace it was just a check up so she wouldn't be anxious. I really like our therapist. They have toys, crayons, games-you name it. She doesn't talk down to Grace but she's incredibly sympathetic. For the first hour Grace crawled into a ball in my lap, grunted responses, pushed on me when she was angry. The therapist picked up on this and noted kids react in so many different ways to stresses in their lives. What she was seeing was normal and expected. As we were wrapping up, Grace hopped out of my lap and began to color. Our therapist was thrilled-it showed Grace was getting comfortable. Our appointment was actually over but they decided to go over to give Grace the time to establish a comfort zone. Grace had a few short conversations about her pets, activities she likes, school--no talk of diabetes-and the therapist declared success.

We go back next Monday. She explained this is a very typical reaction to a new diagnosis. Her goal is help Grace express herself whether it be through art, sign language, or play. Grace got to hang her artwork in the therapist's office and I was blown away by how many pictures decorated her walls--pictures made by kids having a really rough time of things. She assured me Grace will be fine but let's all take a deep breath and remember the importance of patience. It's only been two months. As one kid's picture said, "Chillax."

Next Monday we meet again. We also have an endocrine appointment on Thursday. While we seem to have made some progress with therapy, we've had a string of "high" days that has left us confused and frustrated. Grace is annoyed she was sent home from school last week, missed some school yesterday, will miss some school Monday and Thursday afternoon. She ran high during her soccer game and was a miserable mess. The constant interruptions to her life leave her very frustrated. I'm hoping things calm down soon and we can get into a more regular routine that lets her lead a less chaotic life.

Advocacy

Soon after Grace was diagnosed, I was listening to a program on NPR that featured a discussion of Juvenile Diabetes. The host posed the question, "For you as parents, what is the hardest thing about this disease?" There was the standard response of the worrying, the frustration, etc. One dad went down a slightly different path and answered, "the isolation." This really resonated with me. He went to explain that for him, and many parents of diabetic children, there is a tendency to withdraw from family and friends--to not even talk about how their child is doing. Unless you have a child going through this, it is very hard to convey to people how life-changing this disease is. So, you don't convey it. Family and friends may catch a glimpse of what "a day in the life" is like but it's such a technical and chronic disease, I find it hard to even explain to people how Grace is really doing. People ask and my stock response is "we have lots of ups and downs." It seems to beautifully answer the question both from a physical and emotional perspective. Most people don't understand what a low or a high is, or what an A1C number means, or frustrations with carb ratios-- it's so hard to explain. So typically, I don't.

Back to the dad. He said the one thing that helped his family was getting out there and being an advocate for his child. He became very active in the Juvenile Diabetes Research Foundation where he met other parents who shared his same frustrations and struggles. They spoke the "language of diabetes" and he had a sympathetic audience. It's not to say our family and friends are not sympathetic--because you all are. The check ins, phone calls, texts mean so much. But there are times when you need to connect with people who share your fears, anxieties, frustrations, and anger.

So I took the plunge and reached out to the JDRF. The JDRF has been rolling out its "Promise Campaign." They are hoping families with type 1 children across America will meet with their local representatives to advocate for more research funding. On Monday Grace, myself, and a JDRF advocate met with Congresswoman Schwartz. Grace was very, very quiet. Schwartz explained last year there was a little boy who was so excited to show her his insulin pump, and how it worked, and what his numbers were, and he was just gushing with diabetes information. Grace didn't do that. She curled up in a ball on my lap and buried her face in my shoulder. I didn't make her come to the meeting-she said she wanted to be there but she still struggles to talk about it. I would have loved if she could have explained the hardships of diabetes but I think actions sometimes speak lourder than words. She sat there, vulnerable and sad, crushing my hand. And I think it made an impression. Diabetes isn't all about whiz-bang technology that makes everything all better. Kids fundamentally struggle with this and people need to know that.

Congresswoman Schwartz is not only smart and articulate but also kind and compassionate. She whispered softly to Grace that she would be her friend and fight for her. And I believe her. After our meeting I spoke with the JDRF advocate. Her son was 7 when he was diagnosed and is now heading off to college. We spent a good amount of time sharing the frustrations of this disease but it was also so reassuring to hear how well her son was doing. I got that connection I was looking for. And now I have a new friend who knows the ups and downs and has promised to be there for my family to answer any questions and be a source of support. She looked me right in the eyes and said "You are not alone in this." Those were exactly the words I needed to hear.

Freedom

When Grace came home from the hospital, I was convinced that the best way to protect her and keep her safe was to essentially construct a bubble around her. As many times as Grace's doctors and nurses tried to pound into our heads that life had to return to normalcy for Grace, it just seemed bizarre that me that we were thrown back into the world while we were still flailing and trying to get our feet under us. We barely had any experience drawing a syringe, using a glucometer and lancing device, interpreting highs and lows and calculating carb ratios. I was content to sit in my house and stare at Grace to make sure I didn't miss anything. Funny thing was, Grace did not like this "normal" because there was nothing normal about it at all.

One week after we left the hospital, Grace was scheduled for soccer camp. It made me sick thinking of sending her off to camp, by herself, in the charge of mostly teenagers. Initially I told Tom I didn't think we should do it. He was very supportive and said do what I thought was right. Which made me think, was it right? I called Grace's nurse who explained to me as scary as it might be, the answer should always be "yes." Grace should never be given the impression that diabetes will slow her down. So I took a deep breadth and wouldn't you know, everything turned out just fine. I showed up every day to give insulin and check in and there she was-running, playing, giggling like every other kid. It was hard to make that call but Grace's nurse is right, I will not let this thing slow her down-even if that means I need to occasionally step aside.

The other day Grace said to me, "Mom, when I grow up can I still play soccer?" Me, "Of course! You can even do it for a living and travel around the world playing soccer." Grace, "Like in South America?" Me, "Yes, South America." Grace, "Aren't there snakes there?" Me, "They don't let them play soccer." She was tickled at the idea of being a professional soccer player. And I was too. She will be my Mia Hamm and she will conquer the world of soccer-diabetes be damned!

So the soccer season has started and Grace is a transformed player. Last year, the kid was a mess. She had few fundamentals, was easily frustrated, and tripped over her own feet. I am just blown away by how much she has changed. Grace is fast. I don't say this as a proud parent (of course I am!) but the kid can run. I've noticed this at the playground or kids races they do at 5ks. She has a really long stride and she seems to glide without much effort (unlike her mother:). This past weekend she had so many breakaways, I lost count. To see her charge down the field (with boys in pursuit, no less) made my heart explode. She had a ton of shots on goal-and while she didn't score this weekend-she has a few coming her way.

People frequently ask Tom and I why we run. We both have similar answers: it makes us happy. It gives us a sense of freedom. I think Grace feels that. After every breakaway I shouted to her and gave her the "thumbs up" and she just beamed. She's happy and alive out there. While she's too young to express it, I bet it makes her feel free too.

Last night, when I tucked Grace into bed, I told her how very proud I was to watch her on the field. She was a good sport (even when she was clearly tripped with an open shot on goal) and played with all her heart. I whispered to her that nothing, and I mean nothing will ever stop her from following her dreams. She whispered, "Even diabetes." Not as a question. It was a statement. I replied, "Even diabetes." Grace, "I know mom." If Grace knows it, then it must be true. And I'll take a page out of her book.

Exhaling

So the emails have begun to pour in and rather than answer each individually, I thought I'd share how the first day of school went. I was exceptionally nervous for Grace this morning. There were a lot of unknowns going into today: would she be ok checking her sugar, would she be upset at having to leave the classroom, how would she react to someone else doing insulin, would she speak up if she didn't feel well? She also didn't have a great night last night. For some reason she was running high and went to bed high. She woke up around 11:30 saying she was hot, sweaty, and couldn't sleep. I tested again and she was still high (220) but she didn't want any insulin. This morning she woke up with a normal sugar but I knew she must have been tired with a rough night.

When I dropped Grace at school she was very quiet and I had written out for her teacher when she should head to the nurse to get tested. She's testing every 2 hours and the nurse calls me with her number. Her first check came in high. I was initially concerned but then the nurse said that Grace wanted an insulin snack which made me ecstatic. Her teacher had brought in soft pretzels and while Grace had planned for morning snacks to be insulin-free because she didn't to limit her shots at school, she changed her mind. Insulin-free snacks makes snack time pretty hard-no granola bars, pretzels, gold fish, teddy grahams. But she came home today excited that the insulin had gone well and she wants to now bring an insulin snack. This is wonderful news. Getting her over the "insulin hump" is a major goal of ours.

The good news aside, Grace's numbers were all over the place today. She went as high as almost 300 and bottomed out at with a 67 at the end of the day. The range is insane. The school nurse and I discuss every insulin and we count carbs together. At least when Grace went low she knew immediately to get to the nurse. This created small-scale panic on my part when all the kids came out at dismissal but my Grace was no where to be found. I stood there in the pouring rain searching for Grace with "that feeling" in my stomach. I was just about to head in to see if she was ok when the nurse walked her out to make sure I had her. I knew something was up.

So all in all, Grace's spirits were very high today despite the highs and lows. I'm going to take a page from Grace's book and call the day a success. A success with some obstacles but a success nonetheless.

School Days

In the past, I used to look to September with both sadness and excitement. It's always sad to see the summer come to an end but it's always exciting to start a new school year. I've been experiencing similar emotions this year but with an added layer of complexity.

Luke starts kindergarten and while I'm thrilled to see him make this transition, I'm going to miss his company. The idea of coming home to an empty house, while appealing, is also making me very, very sad. Of course there is Shelby who will be more than excited to have some serious walk time but it's not quite the same.

And then there's the obvious. Grace will be starting second grade as a diabetic. I still have a hard time saying "Grace has diabetes." More often than not, when I explain to people what's been going on with us, I start with the phrase, "Grace has type one. . . " and then hope I can spit out the rest of the sentence. I'm anxious for her to start school, to get somewhat of a break from all this but that's tempered by the anxiety of having someone else manage Grace. It's hard to let go of that role.

Grace has had a lot of anxiety about starting the new year. She doesn't want anyone to know she has diabetes except her closest friends. She was already increasingly self aware of her peanut allergy and this new diagnosis is complicating things (obviously). She'll have to test her sugar throughout the day and receive insulin from the nurse. She seems really annoyed that this will interfere with her day.

We met with school yesterday to set up her plan. We met with the school nurse, the guidance counselor, Grace's teacher, and the principal. Grace seemed really overwhelmed and very reluctant to talk. I can't express in words how painful it is to see your child struggle to communicate their thoughts on something as huge as this. Grace went back forth holding my hand and pushing it away. If I took one more deep breadth in that meeting I think I would have hyperventilated.

In short, school has their stuff together. The school nurse rocks diabetes management. There is no doubt in my mind that they know how to manage this. The first 6 months, she explained, are going to be hectic. She's going to call with Grace's blood sugar numbers constantly. She said expect 3-4 calls a day letting me know how Grace is doing and seeing if any adjustments need to be made.

She also asked if I was "going to be around" over the next 6 months. I'm teaching one class at night on Mondays so I will be local. The nurse was glad to hear it and explained that it's not unusual for kids to want their mom if they're having a bad day, an insulin didn't go well, they got freaked out because they went low in gym class, or are uncomfortable because they went high. They also won't hesitate to send kids home if their stomach hurts or they have a fever--vomiting will set off a string of events that requires close supervision by the Diabetes Clinic. Fevers make sugars do wonky, unpredictable things.

Well-intentioned folks tell us this will get easier. I know that we will get better at managing this but I don't see easier in the future. In fact, our ped said to me the other day at the kids' checkups, "Don't ever let anyone tell you this will get easier. There is nothing easy about diabetes or watching your child go through this. You will become more efficient and more knowledgeable but this will never, ever be easy." Amen to that.

The Low Lows

Grace's sugar has been running low-like real low. Starting on Saturday we began to see number in the 60's, 50's, and even once in the 40's. We had had a super busy day. Grace and I went for a nice 2 mile bike ride, came home, and it was low. I figured it was from the activity and didn't give it much more thought. I gave Grace a juice box which typically brings her number back up quickly. It did and we moved on with our day.

We spent the afternoon at a friends' house and the kids were nuts swimming. Grace stopped for a snack so I checked her sugar and it was 56. Ugh. I gave another juice box and patted myself on the back for my wise investment at Costco of approximately 1 billion small juice boxes. Grace felt better and assumed her fish-like existence in the pool. About an hour later I noticed her sitting very still in the pool looking very, very washed out. I called her over and asked her to check her sugar (she usually insists on doing it herself). I kept staring at her thinking "My God she is grey." Then I saw her hands were shaking and she couldn't actually take her sugar. I finished for her and saw our lowest sugar to date: 44. That one sent me into a panic. You treat it the same way--a fast acting sugar like juice but jeesh-that was just too low. I've read that the scariest part of hypoglycemia is the confusion it creates. You would like someone in hypoglycemia might think, "Hmmm, I'm confused-I bet my sugar is low!" The confusion can actually lead to inaction because the person doesn't even remember they have diabetes and they need to act quickly. This is where diabetes gets scary and why you need to surround yourself with people who recognize the signs of trouble. Each time Grace's sugar came back up but it makes it hard to enjoy a pool, wine, and good company when all you do is stare at your child for the slightest sign of trouble.

I wrote the day off assuming what we saw was a function of lots of activity. But the lows have persisted. Not quite as low as Saturday but barely anything over 100. We decided today was the day to check in with the doctor. The doctor ran through the numbers and asked me what I thought was going on. He explained that sooner than we think, we will be making the call on insulin doses. That we will be the experts on Grace's diabetes and, believe it or not, we'll barely be speaking to him unless we need a script refilled. I said given how long the lows have been going on, maybe her lantus insulin was too high. Lantus is the bedtime insulin that regulates Grace's blood sugar for 24 hours. He concurred, felt this was the correct first step to take and said we'll talk in 2 days. So we are going to adjust the lantus down and see if that helps. While pleased that I *may* have figured out what's going on, this is nothing I ever wanted to be an expert in. As Grace once said to me, "Why couldn't you have been the helpful kind of doctor?" Seriously, kid.

I'm in a little bit of a panic over this with school around the corner. Grace doesn't always realize when her sugar is low. She has a new teacher this year and I'm not sure she will realize when Grace's sugar is low. I'm really hoping we can fix this thing before school starts. The last thing Grace needs is a rough start to school when the kid is already worked up about it as is. Hopefully, this adjustment will do the trick and we'll soon become those experts.

CHOP Visit

Yesterday we had our first follow-up visit with the Diabetes Center at CHOP. I was anxious to hear how we were doing and to get some news on how well (or not) we were managing Grace's diabetes. I noticed on the way to CHOP that Grace was quiet--like super quiet. At one point I looked in the rear-view mirror and noticed her just staring out the window with such a sad face. It broke my heart. It never occurred to me that she wouldn't want to go but her face said it all.

Returning to CHOP brought back a lot of emotions for me as well. Being surrounded by sick children is inescapable. Children in wheelchairs, crying babies, kids with bald heads-parents putting on their brave face- it takes a lot out of you emotionally. I noticed Grace taking it in as well so I just gave her some gentle hand squeezes. CHOP is both everywhere you want to be and nowhere you want to be.

Our first appointment with with the nutritionist. This went really well. If there's anything I can do well, it's nutrition and I know we rock this portion of diabetes management. She loved to hear that Grace can count carbs, can even guess her insulin dose--white flour is like satan in our house. Where we need to make changes is *when* we give insulin. We "post-dose" Grace. Grace eats a meal, we count how many carbs she ate, and give her insulin. I like post-dosing because it allows Grace the freedom to go back for more. The problem with post-dosing is the second Grace begins to eat, her sugar begins to climb. Grace also has a tendency to take her time while eating, run after the dog, running after the cat, bust a move, yell at her brother. . . Short of tying her to her chair, and screaming "My God your blood sugar is rising child, eat, eat!", we had to change course. So now we will be "pre-dosing." We'll make a plate for Grace, give her her insulin and no going back for seconds. This should allow us better control over her blood sugar. She's also put weight back on though has room to gain even more. Ice cream for dessert!

One hour later we met with our social worker. This brought our momentary high right back down. We've all had some concerns that Grace's stay at CHOP and her new diagnosis has left her sad--very, very sad. She frequently wakes up in the middle of the night, refuses to talk about her hospital stay, and dodges questions from me about how she's feeling. I frequently find her in the office coloring like a mad woman, just wanting to be left alone. The social worker tried to engage Grace who had been pretty happy and chatty but Grace just rolled into a ball on Tom's lap and buried her head in his chest. Some behaviors that we've seen like irritability, waking at night, and even physical symptoms like headaches are a sign that Grace needs to talk to someone. We're working on getting that set up.

One hour after that we met with our diabetes doctor. CHOP has a reputation for having brilliant doctors but not necessarily the most kid-friendly doctors. This has certainly been our experience with the allergists. Our new doc, though, was perhaps the friendliest doctor I've ever met. He immediately engaged Grace, used gentle touches, lots of "sweeties," smiles, nodding--absolutely made sure she was part of the conversation. Our biggest problem right now is the injections. She cries and sobs and it's just terrible. Hurting your kid multiple times a day leaves you broken. I have a rep for being the meanest mom in the world but honestly, making your kid sob upwards of 4x a day is just not in my mean mommy repertoire.

The doctor more than understood and gave us a few tips on how to improve on our technique. One thing he really pushed was introducing new injection sites. Currently we use arms and legs. He wants us to move into the belly and back. Grace HATED the idea but we remained open to talking about it. The problem with using the same sites over and over is the build up of scar tissue which then makes it hard for the body to absorb the insulin.

The doctor was pleased with her numbers over the past month and we're going to work on getting it in an even tighter range. He acknowledged how hard it is for us as parents and just said all the right things. He reassured us that his 92 year-old grandma has lived with diabetes all her life. He felt confident that we're moving from the phase of diabetes controlling us, to us controlling diabetes.

So this is how much of a champ Grace is. We got home at dinnertime and she immediately said let's do the insulin before dinner. I was shocked. Then she said, let's do a tummy shot. I was double shocked. Grace's capacity for managing this damn thing continues to amaze me. And while the tummy shot did not go well-awful, terrible, no good--she wanted to try again this morning and went much, much better. Back again for another visit in 2 months.

Ups and Downs

When they told us in the ER that Grace's sugar was over 500 I had no idea what that meant. I mean, I knew it wasn't good because everyone kept telling us over and over what her number was but if you had asked me what a "normal" blood sugar should be, I wouldn't have had any idea. As the days ticked by at CHOP, I became fixated on what Grace's blood sugar number was. It slowly started to come down but I was extremely anxious that it was no where close to being in range. We learned in our classes that we are aiming for a number between 70-180. If it goes above 240, we have to test Grace's urine for the presence of ketones. Ketones are bad news. They occur when there's not enough insulin in the body. Essentially it means your body is burning fat for energy. In our classes we learned not to be too fixated with the high numbers. Those would be coming down. What we needed to super vigilant about were the lows.

I was not even remotely interested in hearing about the "lows" when all we were seeing were the "highs." But now that Grace's sugar is, more often than not, in range, we've experienced some of those lows and they ain't pretty. When Grace's sugar is high, she gets crabby and lethargic. When her number is low she gets super pale, washed out, headachey. Going too low (hyperglycemia) can be very, very bad. When it's high, it's annoying and needs correction but there's nothing immediately dangerous about it. When it goes low, there is a need to act quickly to bring it back up. If left untreated, the worst case scenario is shock and coma. We were assured that this is very rare but you need to stay on top of it. Grace is doing an awesome job of actually telling us when she thinks she is going low. She'll announce "I think I should test my sugar, I think it's low." Sometimes she seems fine and it's a little low. Other times she just looks pale and we know something is up. Physical activity can bring sugar down and during the week of soccer camp we saw that a few times. Misdosing insulin can also bring it down too low. If we miscount the carbs in her meal and error on the high side, too much insulin takes it too low. This is why, if you dine out with us, you'll see some serious faces as we study Grace's plate trying to determine how much she ate, what the carbs *may* have been, and how much we should dose. Big chain restaurants have information sheets on meals. I typically hate big chain restaurants. Mom and pop places (places I like) don't have that info and the guessing game begins.

To fix a low sugar, we carry mini-juice boxes and gummy candies with us. 15 grams of sugar should bring up her sugar by 50 points. We give a drink and wait 15-20 minutes to test again. Usually that does the trick. We typically test right before Grace goes to bed because she needs to have a blood sugar of over 100 in case it dips low in the night. Last night Grace said it might be low and she was right: 64. Of course it was a night when everyone was having fun, running around like idiots, and about 2 hours off their bedtime. 64 is pretty low for before bed so I juice box'd it and some animal crackers and that did the trick. About midnight Grace came into our room sobbing and sobbing and sobbing. We kept asking if she was ok, if something hurt, was it a bad dream? She was incoherent and my first thought was she must have dipped low again. So we hurriedly tested her sugar and it was fine. I have no idea what was going on there but after a half an hour she calmed down and went back to bed. I wish I went back to bed so quickly. That adrenaline surge is enough to keep you awake for a loooong time. Thank goodness for vacations and naps. And cocktail hour.

The Slow Burn

My friend Summer asked me the question “how did you know?” The question has a complicated answer. For those close to us, you know we had some concerns about Grace for a while now. Really our concerns go back to May when Grace started wetting the bed. At first we weren’t too concerned. It was hot, the kids were playing more outside and Grace has always been a deep sleeper. But the episodes started coming with more frequency and we both grew concerned. I try not to be “that parent” who constantly googles her kids various symptoms. I also try not to bother our pediatrician unless I think it’s important. So I googled “bedwetting” and wouldn’t you know what pops up first? Diabetes. I was alarmed but I also remember a funny routine I heard on the radio. If you google any of your medical symptoms you’re likely to come to two conclusions: I have HIV and am going to die. I have cancer and am going to die. I tried to downplay it in my mind and called our pediatrician who assured me kids do go through periods of bedwetting and it’s not at all uncommon.

And then the thirst came. And when I say thirst-I mean thirst. There was no amount of water in the world that could satisfy Grace’s thirst. The constant consumption of water led to more bedwetting. I didn’t call our pediatrician because it was really hot and I asked around (I know my sister is wincing as she reads this) and lots of kids drink a lot of water. And then the hunger came. Grace could pack away as much food as Tom. But she was skinny as a rail- I immediately assumed growth spurt. Again, I asked around- do your kids eat a lot? Of course they do. And then came the moodiness. Grace was just an all out crank. But, pretty much every summer, Grace is cranky especially when growing. So it all made sense--kind of. We talked about making an appointment to see our pediatrician--just too many things weren't adding up.

And then the headaches. Up the mountains Grace experienced God-awful headaches. I mean awful. Screaming, sobbing, holding her head, “please help me mom” headaches. We rushed her to the ER in Scranton where they did nothing. Literally. Asked a few questions, implied perhaps we beat our child, and dismissed the headaches “as something kids sometimes get.” Tom and I looked at each other and said we’re getting the hell out of here. We rushed back, packed up, and headed home. We wanted to be near an ER that took this seriously and booked an appointment with our pediatrician the next day.

We love our pediatrician. One big reason is because he is a pragmatist. He listened carefully as we went through our concerns: the thirst, hunger, bedwetting, moodiness, headaches. He brought up diabetes but said it was rare--very, very rare-since we don’t have it in our families. Each symptom had a very rational explanation. He concluded migraines but, “to dot the i’s and cross the t’s” he would do a urine test.” Tom headed to the car, I was holding the door for the kids to leave when they called us back in. This is the nightmare part--where everything seems to be happening in slow motion. I was watching Grace color as the doctor explained we were headed to CHOP immediately. There was glucose in her urine. I felt sucker punched, as if I had to take a knee. But we couldn’t. We had to get Grace to the ER. I was trying to listen and trying to keep from collapsing. The odds that a child will develop type 1 diabetes in a family with no history of various auto immune disorders is less than 1%--very small consolation. In the ER we learned her sugar was over 500 but, in a sense, we were lucky. Grace’s body had “tolerated” the diabetes quite well. They explained many parents rationalize their kids’ symptoms the same way we did but if it goes on long enough, they come to the ER in a very, very bad way. We were lucky we acted when we did, that our pediatrician--even though he knew the chance was so, so slim- did that urine test.

What's New

I have 5 messages in my mailbox that I've been meaning to answer and a few voicemails I haven't returned from family and friends checking in to see how things are going. I also know many of you have been meaning to call or email or drop a line but feel like you're "hovering" or pestering us. Be assured, you are not. I really do appreciate the calls and emails. To know that so, so many people are behind us is very comforting. I promise you all--I'm not ignoring you. The days go by so quickly that by dinner time my head is hanging and I'm praying for the relief team to come in and get my kids to bed. And then for the relief team to hit my box of wine for a giant glass of sedation.

I'm starting this blog as the most efficient way to keep everyone updated on Grace, how we're all doing, and any new information we'd like to pass along. I have no idea how long the blog will last. In fact, I've come to believe that blogging is an ancient art. But for our situation, it seems to make perfect sense. The format is sooo lame. I'll play with it when I have more time.

So here's what's up. It's been almost 3 weeks since our CHOP experience. In the week we were at CHOP, Tom and I got a crash course in diabetes management. But similar to those silly childbirth classes every anxious parent takes, the classes did not really compare to the real deal of living with diabetes. Our binder of educational materials is well-worn, doctors' numbers are on the top of my contact list, and my bag is loaded with very sharp objects. On a daily basis I am armed with an epi pen, lancets, and syringes. In short, don't mess with me.

I think there is a lot of misinformation out there about diabetes. I know my personal knowledge base was dated by about 10 years. Our first night at CHOP I panicked that Grace would never be able to have sweets again, would be on a special diet, and would eventually come to hate food given the restrictions we've imposed because of her food allergy. The only silver lining I saw was that I'd get a crap-load of new cookbooks out of this. Anyone who's seen my collection knows how serious I take my cookbooks. I had to find a silver lining.

The good news is that Grace can eat whatever she wants. The bad news is that Grace cannot eat whatever she wants. Her days of wandering into the kitchen and grazing on carrots and tomatoes and ranch and hummus and yogurt and whatever else was on her approved snack list have ended. Grace takes 2 kinds of insulin. One is given before bed, the other every time she eats something over 5 grams of carbohydrates. Now stop reading this and go look in your cabinets. Have anything a kid would like that's under 5 grams of carbs? No, I didn't think so. We have a list of snacks that Grace can have that are "freebies"--no insulin required. Cheese, smoked meats (salami, pepperoni, etc), lunchmeat (meat in general), string cheese, guacamole, celery, sunbutter, cream cheese, small servings of veggies with ranch, hardboiled eggs, pickles-I could go on. No where on that list is crackers, Teddy Grahams, yogurt, fruit, pretzels-staples of Grace's diet. Translation: Grace gets a lot of insulin. It's her choice whether or not to have a carb snack but, hang with me here, she has a "limit" of how many carbs she can have a day so we generally limit carb heavy snacks. If Grace wants fruit or yogurt or cookies, it comes at meal time with a dose of insulin.

How do we keep track of all this? I do (by and large), in a notebook I keep with me at all times. I count carbs (more on that in a minute), note her blood sugar (taken with a pin stick to her finger) and I then use a chart Endocrine has given us to calculate her insulin dose. It involves addition, multiplication, and division. Can you see the sweat on my brow? It makes me nervous-very nervous-to calculate an insulin dose. Sometimes it's easy, other times more complicated. If I screw it up, I screw up her blood sugar.

We carb count everything through the internet and a handy book they gave us. Some things are now committed to memory-pizza has 22 carbs per slice, milk, 13 grams per cup, ketchup 4 grams for 2 tablespoons. Other things are not so easily found. For example, the canary melon I received in my farm share today (13 grams for one cup diced)-- took a little digging to find that one. I calculate all her carbs and record the number on a chart we have to keep for our appointments. We have phone contact once a week with Grace's endocrine practice and they ask us to read back numbers to see if an adjustment needs to be made. Up until today, I had to wake Grace every night a 2am to make sure her sugar had not gone too low while she was sleeping.

Some people have asked me if Grace can take insulin orally. No, her body would destroy it. Type one diabetes is an auto immune disorder. For her body to absorb the insulin, it has to be injected. Have you seen how skinny my girl is? Injections either go really well (she barely notices it), or she howls. And howls. And howls. And sometimes hits. And sometimes kicks. But we have a deal--a solemn pinky sworn deal-that I will never, ever walk away when she is upset. So I take it. Just like Grace takes it.

There is much more to write but I'll save it for another day. Feel free to ask questions--fire away. I'll do my best to get back to you and update more as I have time.