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.