On a Learning Curve

Life may not be easy, but it's always an adventure.


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World Diabetes Day: A Day to Give Thanks

Today is World Diabetes Day. Despite the alarming prevalence of Type 2 diabetes, I am not writing a PSA. I’m not going to lecture about the importance or regular exercise or the necessity of eating a balanced, low-fat diet. Nope. Today I want to recognize Dr. Frederick Banting.

Today is the 123rd anniversary of Dr. Banting’s birthday. If you don’t recognize his name, he shared the Nobel Prize in 1923 for the discovery of insulin. Dr. Banting is one of the reasons that S is alive today, and it seems appropriate to celebrate his contributions to medicine and society during the month of November.

4 years old and wearing her first insulin pump. My brave girl!

4 years old and wearing her first insulin pump. My brave girl!

You see, contrary to popular understanding, insulin is not a cure for diabetes. Specifically, insulin is what keeps S and every other Type 1 diabetic alive. S takes approximately 22 units of Novolog, a fast-acting insulin, each day in tiny increments administered around the clock by her Animas Ping insulin pump. We test her blood sugar through finger sticks up to 10 times a day, and recently we’ve started to monitor her blood sugar through a Dexcom continuous glucose monitor (CGM).

S was the only ballerina who accessorized with a pink insulin pump.

S was the only ballerina who accessorized with a pink insulin pump.

Still the fact remains that S’s pancreas is purely for decorative purposes–or at least that’s how we tease her. And that’s probably the funniest thing I can think to say about diabetes. Type 1 diabetes is an autoimmune disorder in which the body attacks the cells in the pancreas responsible for manufacturing insulin. Without insulin, the body cannot use carbohydrates for energy or remove glucose from the blood stream. While there are many theories, there is still not a definitive cause for this disease.

Ready to swim and still wearing her pump at age 9.

Ready to swim and still wearing her pump at age 9.

The need remains for a real cure. We are unspeakably grateful for S’s insulin pump and CGM, and we eagerly anticipate the day that the Artificial Pancreas Project delivers an FDA-approved device in the United States. In fact, none of these medical advances would be possible without Dr. Banting and his colleagues Dr. J.J.R. Macleod and Dr. Charles Best. And so on World Diabetes Day 2014, I would like to wish Dr. Banting a very belated but very sincere happy birthday.


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Out of My Hands

I like being in control. There. I wrote that sentence.

There is only so much in my life, however, that I can control. I can run a household, but I can’t decide when it’s a convenient time for my husband to deploy. (Nope, the Marine Corps is completely uninterested in my opinion.) I can make the best lesson plans and order exciting curricula, but I can’t rewire the way that G’s brain pays attention. I can log 100 miles a month and swallow my Zoloft, but anxiety still rears its ugly head from time to time.

I also have no control over S’s insulin pump. I learned that yesterday morning when S came home from swim practice and announced that she had an alarm message on her pump. After two attempts to rewind and reload the insulin cartridge, I concluded that the pump had broken and that S needed to go back to injections while Animas shipped us a new pump.

Let me rewind for a minute. S was diagnosed with Type 1 diabetes when she was 3 years old. She spent Easter weekend in a children’s hospital while Ryan and I learned how to inject insulin, check blood sugar, count carbohydrates, and do the job that her pancreas was supposed to do. For a full year we administered three types of insulin at three different times a day; we carefully counted and fed her the same number of carbs at the same time each day. It was exhausting and scary. On top of this, I was in my first year of homeschooling G, and H was still nursing. By the grace of God, we all survived that first year with diabetes.

I forgot to mention, however, that S was always hungry and that she was still struggling to gain weight. We made the decision to put S on an insulin pump. Of course, it had to be a pink insulin pump, and she had to agree to wear it. We found a pink pump, and I ordered a pump waistpack in zebra fabric so that my little horse lover could safely carry her pump. A month after starting pump therapy, S had gained three pounds and grown a full inch; her hemoglobin A1c also dropped a full point. The best part was that she could eat whenever she wanted. We still followed a diabetic diet, but she was thriving again at the age of 4.

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S on her very first day with her insulin pump. So little and so much pink!

She’s been wearing a pump for five years now. While this isn’t the first time that something on the pump has malfunctioned, this is the first time that we’ve had to remove her completely from the pump. Guess what. I’m totally out of practice when it comes to remembering how to give injections and how Lantus, a slow-acting insulin, and Novolog, a fast-acting insulin, interplay. It turns out that I’m not a good substitute pancreas when I can’t use a pump.

Until yesterday, I failed to realize just how important S’s insulin pump is. I’m not exaggerating when I say that this pump literally keeps our daughter alive. (That’s another scary sentence to write.) Did I feel out of control? Yes. Did I try to shove my anxiety back to a dark corner? Yes again. Was I thankful that Ryan was home from water survival training? Absolutely. Did this unexpected experience drive me to my knees? You bet it did.

This morning S woke up with a blood sugar of 352. That’s after spending a good chunk of yesterday in the 40s and 50s. As an added bonus, she was spilling ketones this morning, so I made my third phone call to the emergency operator at Georgetown University Hospital. But here’s what I did first: I prayed over S. I asked that God would protect her from these crazy numbers and that He would grant me wisdom in knowing how to take care of her. I asked a faithful group of friends to pray with me, too. Right before I took H to swim practice, we prayed that her new insulin pump would arrive this morning instead of later today. I said those prayers in faith because I had exhausted everything I knew how to do on my own. I said those prayers because crying in frustration and snapping at Ryan wasn’t making me feel any better. I prayed because God always hears our prayers, and faith means believing that God will accomplish what we cannot.

An hour later G and S arrived for the second swim practice, and they brought good news with them. S had drunk enough water to flush out her ketones and a big brown UPS truck had delivered a new pump. Amazing. The whole experience lasted 24 hours. S survived, God is still in control, and I have to admit that He is much better at being in charge than I am.

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S knows how to accessorize: goggles, swim cap, and pump!

Speaking of situations that are beyond my control, I’d like to ask a favor of my readers. I have a niece and nephew whom I have not met. I have not met them because they are currently living in the Democratic Republic of Congo. My brother- and sister-in-law have completed all the necessary steps to bring home their children; however, the DRC’s government has suspended exit permits for legally adopted children. Nearly 800 children are waiting to join permanent families; tragically 10 children have died from malaria and malnutrition–preventable diseases–while waiting for their exit permits. I realize that 800 children is not a large number, but each of these children is special to their families. Would you sign this petition to request that the Obama administration contacts DRC President Kabila before the African Leaders Summit in early August? It’s a small act, but it just might be enough to bring two children home.


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Another Way to Support JDRF

Type 1 diabetes is near and dear to my heart. In our home, we jokingly refer to S’s diabetes as our fourth child. Let me clarify: we don’t love her diabetes, but constantly checking blood sugar, calculating insulin boluses, and counting carbohydrates is a full-time job!

The other week I shared that you could support the JDRF by purchasing paper shoes at Marshalls. Today I’m encouraging you to get your annual flu shot at Walgreens. (Disclaimer: I am not anti-vaccine, nor do I want to engage in a discussion on vaccines.) Every fall we all get our flu shot (or mist) to help keep the flu virus away from S. Regular illnesses that sideline otherwise-healthy individuals can really wreak havoc on a diabetic person. As an example, S contracted bronchitis this summer from her swim team buddies. She battled high blood sugars for almost a full month as her body reacted to the illness. High blood sugars mean extra finger pricks, extra insulin, checking for ketones, and being extra-vigilant with food choices. See what a pain diabetes is?

So if we can keep S from contracting the flu, we’re all on board to get our flu shot. Okay, 3 out of 5 of us are on board. I bribe the other two dissenters.

If you’re already planning to get this year’s flu shot, why not get it at Walgreens? Save yourself a doctor’s visit (and co-pay) and contribute to the JDRF at the same time. Just print out this flyer and present it at the time of your visit. Walgreen’s will donate $1 for each flu shot.

In other diabetes news, how exciting is this tidbit?! Medtronic has just introduced an FDA-approved insulin pump that used artificial pancreas technology! On Friday, the MiniMed 530G with Enlite was approved for use in the U.S. This insulin pump/continuous glucose monitor (CGM) system suspends insulin delivery when blood sugars start to drop below target levels. Amazing stuff, people! I know that many of you are more interested in the iphone 5, but I’d camp out for a week to get my hands on one of these!


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With apologies to William Carlos Williams

It’s not supposed to arrive until tomorrow. Still I hold out hope that perhaps a brown UPS truck will pull into our driveway before the end of today with a special delivery from Animas Corporation. Until then, we’re exhausting all sorts of strategies to distract us from the waiting: swim practice, a 4-mile hill workout, chatting on Facebook, a trip to the library with 5 mynah birds young girls, a long email to my soccer team, and–I am not making this up–a neighborhood stake-out with 3 police officers in 3 different uniforms. Since all of that has failed to hasten the delivery of S’s new insulin pump, I thought I’d try a little poetry. Do you remember reading William Carlos Williams’ “The Red Wheel Barrow” in school? It’s the sort of poem that English teachers (me, included) like to assign because it makes poetry simple and accessible and allows us to gradually transition to scarier poets who use rhyme and 25¢ vocabulary words.

Insulin Pump

so much depends
upon

a thin plastic
tube

running from a silver
box

straight to Sarah’s
belly.


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Important Things

Yesterday we discovered condensation inside the battery compartment and under the screen of S’s insulin pump. Uh oh. For an insulin pump that promises to be waterproof up to 12 feet for 24 hours, condensation means something is wrong. In about an hour’s time, however, I had ordered a loaner pump and replacement pump. Crisis averted, I thought. Not according to S. “Did you order me a pink insulin pump? I’m not wearing another pink pump.” No, I had not. I had completely forgotten to ask about the color. Had I thought to remember, I would have selected green, her favorite color.

Silver seems so grown-up, but I dutifully called Animas today to make sure they were not sending another pink pump. Both customer service reps laughed when I explained that my daughter happily wears her pump with little complaint but is now threatening a boycott if she has to wear something pink any longer. You see, she chose pink when she was 4 years old; in fact, the only reason she agreed to wear a pump at that age was because there was a pink option. Now at the ripe age of 8.5 years, pink is her least favorite color.

But the color is important to S. She knows how a pancreas is supposed to work, and she knows vocabulary words like glucagon, cannula, bolus, and basal. She loves the freedom that wearing an insulin pump brings, but she also longs for some sense of control in her life. Diabetes has taken away much of her independence: she cannot eat whatever she wants, she has to carry a glucometer and juice with her when she visits anyone’s home, and her mom insists on knowing where she is at. all. times. So yes, it is important that she be able to  select a silver pump, and I am happy to oblige her request.

The other day I was chatting with a longtime friend about how we were spending the summer. Ten years ago, we were both Marine wives who taught high school English, coached girls’ soccer, and went home to our husbands and dogs. Life was easier and simpler. Now we have followed our husbands to separate coasts. Neither of us is teaching or coaching at the high school level, and only one of us has canine companionship. Both of us have the privilege of raising a daughter or three, and both of us have known extraordinary hardships and disappointments in the past decade. My friend (Look, J, you’re in print! Thanks for subscribing!) told me that she was impressed that I was still living my life the way I wanted to live it. I can’t remember what I replied because I was shocked by her words.

Had you asked 22-year-old me what I would be doing in the years following college, I wouldn’t have imagined that I would be homeschooling three children or that I would have dropped out of grad school. I couldn’t imagine at that point how children would completely change my heart, or that I’d be content to stay at home with small people for the past decade. But these are the values and choices that are important to 39-year-old me. Having loved and lost three children, I don’t want to miss any of the big moments in these girls’ lives. Yes, I let my teaching licenses lapse. No, I did not finish a master’s degree in library science. No, homeschooling was not something I always wanted to do. Yes, it is stressful to manage S’s diabetes and G’s attention problems. And yes, that’s why I have taken up running with a vengeance lately.

These are the things that are important to me: family, friendships, striving to find balance in all areas, recognizing that I cannot control all aspects of life, and surrendering to a God who has my best interests in mind. Having a career and earning all sorts of accolades pale in comparison to understanding that silver is the perfect choice for a new insulin pump.


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Things I Am Learning This Week

It’s been a few days since I’ve written. Here’s what’s going on this week:

1. No more home school co-op for us. Yes, we’re going to take a bold step and actually educate the girls at home. Brilliant concept. In fact, it’s been about 5 years since we last tried this approach to schooling. Home schooling is a wonderful educational option, and there are so many ways to accomplish it; however, there is also a seemingly endless list of educational opportunities that keep us out of our house. And let’s just say that carving time out of our family’s schedule for unicycling just wasn’t something Ryan and I thought was a good idea.

2. Insulin pumps break when you are least expecting them to do so. Then again, I can’t think of any time that seems right for S’s pump to stop working. Yay for the loaner pump that is making its way to us. And boo for the two to three weeks that it will take for Tricare to approve our new purchase.

3. My littlest running partner, H, slows way down when it’s hot outside. To clarify, I’m the one running, and she’s the one pedaling the Cutie Cat pink and purple bike. At her fastest, we’re logging 9:30 miles; our slowest mile clocked in at 11:00 last Friday. The time spent with her is totally worth the slower pace.

4. The smallest accomplishments bring the greatest joy. S won her heat in her second freestyle race at yesterday’s swim meet. Her face was radiant when she held that blue ribbon in her hand. My face was radiant this morning when her endocrinologist’s secretary read me her latest a1c results: 7.1 for the second time in a row.

5. Life is a constant exchange of stresses. Now that I no longer have to design and plan a creative writing/public speaking course for middle school students, I have plenty of time to earn my E-level soccer coaching license. So far I have completed the online Level 8 referee course and the Heads Up concussion training. After I write a couple of papers and spend a weekend on the soccer field, I will be licensed. (Why, why, why did I not do this when I was younger and single???)

6. On a serious note, the gift of life is a beautiful thing. We attended a sweet memorial service for the tiny baby boy of some church friends of ours. Born at just 22 weeks, his little life has already made a permanent impact on his parents, big sister, and extended church family. To paraphrase our pastor’s words, we were confirming the choice his parents made to celebrate his brief life at a stage where the majority of Americans believe his existence is part of a woman’s choice. I shed a few tears, gave quite a few hugs, and took great comfort in knowing that little Walter is running around heaven with my Seth, Owen, and Lucy. I look forward to the day that I will join them.