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.