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.