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!
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.
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.
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.
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.
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.
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.
I haven’t been posting lately. As soon as Ryan arrived home, he left again. School, lessons, and soccer fill our days, and we were blessed–but exhausted–to take part in our neighborhood’s version of Extreme Home Makeover. Instead of a lengthy post, I thought I’d share a few numbers.
40-44: My new racing age group. I’m at the low end of the spectrum.
5: How many seconds I missed beating my half marathon PR yesterday.
5.5: How many hours I slept the night before my half marathon yesterday.
62: The number of minutes that the start of yesterday’s Iron Girl Half was delayed.
26: S’s new all-time lowest blood glucose reading.
39: The amount of carbohydrates in grams that it took to raise S’s blood glucose to a safe level.
40: The number of $1 bills my mother-in-law sent me as a birthday gift.
35: The number of $1 bills I paid a massage therapist to work out my post-race kinks today.
23: The number of school days we have left in this school year.
19: The number of math lessons left in this school year.
5: The number of times I sent naughty children to their rooms today.
30: The number of days that Ryan just announced he would be gone this summer.
38: The number of days until I leave for Ragnar Chicago.
18.1: The number of miles I will run during Ragnar Chicago.
1000: The number of words this picture is worth. This selfie is of me and my favorite running friend Tracy, who selflessly paced me through yesterday’s run. Even the 2 hills that I could not climb without walking. And over the finish line as I tried to tell her that my legs could not move any faster. Here we are in our post-race, no make-up, sweaty glory.
I started to write a different post. I had a bad week last week. Bad by anyone’s definition. S’s diabetes wasn’t cooperating, and we narrowly avoided a trip to the ER. I needed help with childcare and was frustrated not to find any. I was attacked by an aggressive German shepherd during my long run on Saturday with two other friends. And all of this happened with Ryan on deployment.
But we pulled through last week. S is healthy again, and life with Type 1 diabetes continues to be a roller coaster of surprises! I filed reports with the sheriff and animal control, and my friends rallied around me last weekend. An RN named Amy drove up after the attack and acted as our Good Samaritan, too.
Instead, I’m going to write about our next-door neighbors. They had a much worse week than I did. Their sweet 7-year-old daughter was rushed into emergency brain surgery last Thursday. It turns out that she didn’t have a virus; she has a brain tumor. That surgery saved her life. And this morning, she is back in the operating room. This could be the most important day of her life–for her and for her parents.
Please join me in praying that the Great Physician would guide the skillful hands of Sofie’s surgeon this morning. Please don’t debate the existence of God or comment about the unfairness of this situation. Yes, life is unfair. No, I don’t know why bad things happen to good people. I just know that God answers prayers and that He heals. We have witnessed His healing in our own family; we also have a daughter who lives with an incurable disease. We know that He can and does do wonderful things with horrible circumstances.
So pray. Sofie is almost halfway through a 6-hour surgery. She needs healing, and her parents need peace.
Yes, I am bad at regularly updating my blog. I wrote half of a post last week, and you can guess that I never finished that one. Instead of knocking myself out to write something meaningful, I thought I’d share a few pictures with you. As my title suggests, I am surrounded by signs.
Want to take a guess who created this thought-provoking beauty?
This one is courtesy of H, my 6-year-old budding philosopher. I have no idea what inspired this deep thought today, and I love that the meaning changes depending on where you decide to place punctuation.
I am surrounded by H’s signs these days. To the back of the front door, she taped a birthday card for the brothers she has yet to meet. On the refrigerator is a Valentine’s sign that she made me; she gets big Brownie points for that since her big sisters told me that they “forgot.” Next to the downstairs bathroom is a giant thermometer. She used two full pieces of paper and colored most of the thermometer blue on Monday morning when S was having a sick day.
Speaking of sick days, that is another reason that I haven’t been writing. S woke up on Monday with a blood glucose of 407. That’s an all-time high for a pre-breakfast number. (Usually she has to sneak a handful of dried raisins and “forget” to tell me or to bolus for them.) She also was spilling large ketones and told me she was going to vomit. I thought we were going to have a repeat of her trip to the ER three months ago. Instead, we loaded her up with insulin, gave her half a Zofran, and filled her up with fluids once her nausea subsided. We said a lot of prayers, too. Miraculously–I’m really not overusing the word–we flushed out those ketones in three hours. I believe in prayer. And now I believe in Zofran, too.
Soccer season started this week, too, so that’s another distraction to add to the list. I made it through the first clinic of the season, ordered uniforms for new players, scheduled a last-minute scrimmage, and wrote out a few practice plans. So what if tomorrow’s high is 40° colder than today, right?
That’s why I think this next sign is a perfect reminder for how to approach hectic, harried days.
Again, I cannot explain the origin of this sign. I’m going to assume that this is not a comment on my driving skills.
Ryan called last week, too. I love that I still am thrilled to hear my husband’s voice after 15 years of doing his laundry. I’m thankful, too, that’s he was safely out of country last week during a violent incident. I’m really looking forward to his return. We’ve made it past the halfway mark of this deployment, and we’re almost ready to start the countdown to his return. When we figure out the exact date, we’ll let H make a few more signs to help us pass the days.
Neither did yesterday. Yesterday started out with the usual morning drama in our household: G taped S’s toothbrush to the bathroom ceiling, and the girls decided that fighting would be a better use of their time than getting ready for school or their dental appointments. Yes, I wrote that she taped a toothbrush to the ceiling. Apparently that’s how 11-year-old sisters show that they love their younger sisters.
After a visit to our beloved dentist, S sort of melted down on the car ride home. She and I both agreed that she needed to go to bed. Then she decided that she needed to vomit. Twice. I left G and H with a checklist of assignments to finish downstairs, and I camped out in the bathroom with S until Ryan relieved me about 4 hours later. I then made two trips to Target: Ketostix and then the children’s ibuprofen that I had forgotten on the first trip.
S opted to sleep on the bathroom floor last night. She hates getting sick in her bed, so I made her a towel pillow on top of the bath mat and covered her with two towel blankets. She slept peacefully there most of the night; however, she was sick again twice during the early morning.
This morning S looked terrible. She hadn’t eaten anything since Monday’s breakfast, and she wasn’t keeping liquids down. I convinced her to check for ketones, and the stick turned dark purple immediately. That’s a bad thing for someone with Type 1 diabetes. S has been diabetic since she was 3 years old, and any illness she gets usually exacerbates her blood sugar control. A phone call to the endocrinologist confirmed my fears: We needed to head to the closest emergency room for fluids and bloodwork. We needed to make sure that she wasn’t heading towards diabetic ketoacidosis (DKA).
There are times that I find it inconvenient to live in a semi-rural county, but this wasn’t one of them. The ER admitted S right away and started her on a saline solution. S handled her first IV bravely and was relieved to see that one stick was all it took to draw blood and administer fluids. After her first half-bag of saline, she took Zofran. 15 minutes later she took Tylenol. Can I tell you how amazing it was to watch my little girl rehydrate and return to her usual self? Her ketones decreased from large to small, her 24-hour headache disappeared, and tests showed that she did not have DKA! Because she’s been running a low-grade fever, she also got a chest x-ray. That’s where we met our friend Melissa, a friend from church who is studying radiology. She wanted to print out a copy of Sarah’s lungs–how cool would that look in our homeschooling portfolio?!–but her supervisor nixed her idea.
Unknown to me at the time, our pastor had prayed for S’s healing with a few other area pastors. Our substitute grandmother–the famous Mrs. Debby–had called him with our news, and Pastor Rob followed up by heading to the hospital. Except that we left the hospital before he arrived. Oops. Sorry, Pastor Rob.
I decided that today would be a day off from schoolwork for everyone. That’s the beauty of homeschooling. We’ll make up the lost day another time. S is resting, H is asking me how to spell words like mustache, and G decided to try out the chalk pastels. Later, I think we’ll decorate the girls’ Christmas tree.
G’s latest creation: Advent wreath and manger scene in chalk pastel.
Today hasn’t gone the way I had planned, but that’s okay. All is well with our girls, our community reached out in love, and I’m learning to be flexible.
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!
Want an easy way to make someone’s day? Buy a shoe. Or two. Or three.
If you already enjoy shopping at Marshalls–can I tag my neighbor Sam in a blog post?!–there’s another reason to take your purchases to the check-out line. Buy a paper shoe and help find the cure for Type 1 diabetes. (I told you it would be easy.)
Every $1 spent on a paper shoe goes directly to the JDRF Paper Sneaker Campaign and funds research such as the artificial pancreas project. There are other ways to contribute to this amazing organization, and you can read about them right here. But today I’m just encouraging you to pick up a pair of shoes at Marshalls. (And Sam, you can tell your husband that I said it was okay.)
Need another reason to shop? Here she is. S is our extra-sweet daughter who has been living with Type 1 diabetes since she was 3 years old. You can’t see her insulin pump, but you can see her beautiful smile.
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.
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.
Reflections and thoughts of a young athlete, an aspiring author and an advocate who deals with the complications of type 1 diabetes, 2 brothers, and a mother runner. Companion to her mom's @runwithmygirl on instagram #motherdaugherrunclub #jdrf #ivivva
On a Learning Curve 