Bookends

We do not have to become heroes overnight.  

Just a step at a time, meeting each thing that comes up, 

seeing it as not as dreadful as it appears, 

discovering that we have the strength to stare it down.

 - Eleanor Roosevelt 

Are you ready for the game?  I haven't done much in particular to prepare for tonight's title game, because, if you recall, I am taking a step back from the drama of college football.  Last year, I baked cookies that we all ate as Florida State defeated Auburn.  I of course wanted Auburn to win that game, but was more than satisfied that it was Auburn, & not Alabama, playing for the title.

What I remember most about last year's title game is Reagan lying listlessly on the couch.  That Monday evening, we were a little over a week away from her diabetes diagnosis.  All the literature says the onset of type 1 is rapid.  Once the production of insulin ceases, or is significantly reduced, the body begins to shut down.

In the days that followed the title game, I remember growing increasingly worried about Reagan, but there was nothing obvious to do.  She was a little tired & not quite herself, but there was nothing else alarming, no fever, no cough, no vomiting, nothing.  I took her to her pediatrician on Tuesday, January 14, but I didn't know exactly what to tell him, other than she had the sniffles.  He started her on an antibiotic.  Looking back, I do remember her giggling & smiling some in his office, which is indicative of how rapidly things changed from Tuesday to Thursday.

Over the next two days, she appeared to lose about five pounds.  On Thursday morning, Trey lifted her out of her bed, &, as he described it to me, her head lolled back, as if supporting it was too much for her.  Trey took her to the doctor for the second time that week, & that visit resulted in a trip to the ER that may've saved her life.  I believe that, had she appeared on Tuesday as thin & weak as she did on Thursday, her pediatrician would've sent her to the ER then.  That is why her giggle in the doctor's office on Tuesday stands out so vividly to me now; it was an impossible sound that Thursday, a glaring implication of her deterioration.  

It is difficult to think back on those weeks, to realize, in retrospect, how sick she was, & how foolish we were, giving her an antibiotic, & trying to get her to drink Sprite & Gatorade, thinking she was dehydrated & weak because her appetite had been down.  Do you have any idea how many carbs are in Sprite & Gatorade, or how dangerous it is to foist those on a small child whose insulin production has halted?  This time last year, I didn't know.  It's amazing to me how much I didn't know then that I do now.  

That Wednesday evening, the eve of her diagnosis, Trey had a late deposition.  My in-laws came & stayed with Henry & the obviously ailing Reagan so I could go to church.  It was cold & dark outside when I left the house, & I drove away thinking intently about Reagan.  I knew something was wrong with her.  I'll tell you a little secret: I didn't go to church; I went to Outback.  I knew that the kind people at church would likely ask me why I was alone, were the kids sick, & that those inquiries might end with me in tears, because, yes, yes, Reagan was sick.  I just didn't know how sick at the time.  I realize, looking back, that in those last days prior to her diagnosis, I entertained the idea she had every disease imaginable, with the exception of diabetes.  

I sat at Outback alone & read.  I was almost finished reading The Book Thief, & it was getting down to the wire, as the book club was scheduled to meet the next night.  The Book Thief is one of the most narratively interesting, as well as one of the darkest books I've read.  It's narrated by Death, & tells the story of Liesel Meminger, a young girl who experiences unimaginable loss during WWII.  The book is haunting & beautiful.  It makes you ache, both because of the depravity of some men, & because of the unwavering spirit of others.  I don't know the extent to which God involves Himself in details in our lives.  I don't know if it's presumptuous to say that God has a hand in what my book club reads.  I do feel that those few moments of solitude at Outback, sitting alone & finishing Liesel Meminger's gripping story, & praying, were preparing me for what I would face the next day.  I gained some perspective that I would soon desperately need.

When the book club met the next night to discuss The Book Thief, I was at Reagan's bedside in PICU, a maelstrom of emotions raging in me.  What I felt most poignantly was relief.  I later read this interview with Jay Cutler in which he echoes this sentiment.  At the time of this interview, Cutler was the starting QB for the Chicago Bears (this may still be the case, but I'm not sure because I just don't pay much attention to the NFL . . . I can tell you, however, that Mr. Cutler is a product of the SEC).  Cutler was diagnosed with type 1 diabetes in 2008, & explains that prior to his diagnosis, he had lost about thirty-five pounds, didn't know what was wrong with him, & when he was diagnosed, "I was actually relieved."  

Prior to being ushered up to PICU that Thursday, we spent a few fretful hours in the ER.  There is a spot outside a room in the St. Francis ER, a little section of cold linoleum, where I first felt the relief of which Mr. Cutler speaks.  It was relief tinged with agony, but relief, nonetheless, when a nurse informed me Reagan's blood work indicted her sugar level was upwards of 630.  I am certain at that point the nurse knew a diabetes diagnosis was imminent, but she wasn't at liberty to say that, so she just said they would run the blood work again.

I knew.  Suddenly it all made sense.  She hadn't been running any fever because her body wasn't attempting to fight off an infection, an invader; her body was shutting down because it had no way to access energy from the food she'd been eating.  Now I knew what was needed to revive her, the magic word around which our world now spins: Insulin!, blessed insulin.  Having an answer, knowing that soon she'd have life sustaining insulin flowing through her veins, was the silver lining of what was otherwise absolutely the most trying day of my life.  It was a fortuitous moment, that encounter with the nurse in the hall; it gave me a few minutes to process before the doctor sat us down & officially diagnosed her.

Here are some pics of her hospital stay.  These were all taken after she'd been on an insulin drip & her sugar level was back in a healthy range.  It was amazing to watch as the insulin revived her.

Last week, I took Henry to the pediatrician for a well check-up.  As we suspected, he is perfect - - tall, heavy, & perfect.  After briefly discussing Henry, our pediatrician asked me about Reagan.  I told him a little about her insulin pump, & he asked me an array of questions about the pump, about her diet, about how we manage various situations.

It was a little odd, the doctor asking me questions.  He nodded & marveled at some of what I was telling him.  One thing I've learned over the last year dealing with many doctors is that, aside from endocrinologists, doctors don't know much about diabetes, particularly about how to care for & dose insulin for a small diabetic child.  When Reagan ended up back in the hospital in February of last year with diabetic ketoacidosis (a dangerous condition that results from persistently high blood sugar), we dealt with several doctors, all of whom had opinions about how much basal insulin Reagan needs to prevent additional trips back to the ER.  My favorite doctor is the lady who said, "I don't know.  I am going to call your pediatric endocrinologist."

When I left the doctor's office last week, I got Henry situated in his seat, & then buckled myself in & just sat there, thinking about the conversation I had with our pediatrician, nearly a year after bringing an ailing Reagan to him, all of us oblivious to the fact that she needed insulin.  

I love our pediatrician.  When my babies were born, he was the one who came in my hospital room, smiling & reassuring me they were perfectly healthy.  Believe me when I tell you he has seen me at my absolute worst; I cannot imagine what would top "I just gave birth" on a list of "my absolute worst."  I sometimes wonder if he feels bad for sending us home with an antibiotic two days before Reagan was diagnosed with diabetes.  I of course do not at all think he should've assumed she is a diabetic.  The doctor she saw on the morning of her diagnosis was worried about meningitis, & that's what sent us to the ER.  I don't think anyone but the Lord could have guessed, on that Tuesday, with her occasionally giving us a giggle & a smile, that Reagan's problem was insufficient insulin.

It was exhilarating, to say the least, to sit & talk with the doctor a year post-diagnosis & realize what I've learned, what I am now able to do for Reagan, & how far we have all come as a family, because diabetes is a family diagnosis, particularly with a child Reagan's age.  The months after her diagnosis were the most difficult of my life.  I've never felt so helpless, though helpless seems too small a word to describe the feeling of not knowing how to help your child (in my head, I sometimes yell at my former self: UP HER BASAL, UP HER BASAL, FOOL).  Henry was seven months old, not sleeping well, & still nursing.  I was determined to nurse him a bit longer, given that I'd managed to continue nursing him through a bout of mastitis that landed me in the hospital when he was three months old.  I was always tired, & my biggest fear was that, in my sleep deprived state, I'd calculate carbs wrong, or, assuming I got the math right, I'd draw up the insulin wrong.  We were using syringes then, & drawing up the dose took steady hands, & an alert mind, & I was lacking both almost all the time.

When Reagan was hospitalized with diabetic ketoacidosis a month after her diagnosis, I was devastated.  I felt like a failure, though admittedly when we got her to the hospital & I saw how unsure the doctors there were of her exact insulin needs, I felt marginally better.  After many discussions with the doctors at St. Francis, as well as Reagan's endocrinologist with whom I spoke over the phone, I learned a great deal more about basal insulin & how it works, & when we went home, I felt I knew what I needed to know to safely adjust Reagan's insulin & keep her out of the hospital.  In May of last year, we traveled to Jackson to see the endocrinologist.  Reagan's first A1C was a 6.8.  I can't think of any number that has ever brought me greater relief, or greater joy, or a greater sense of accomplishment.

In some ways, I've learned more in this last year than in all my years of schooling combined.  I've learned a tremendous amount about myself, about how truly blessed Trey & I are to have families willing to help us in every way they can, & I've learned that there are so many people living with type 1 diabetes.  The first week home from the hospital, I got a call from Ms. Mary Fortune, a wonderful lady who heads the Diabetes Foundation of Mississippi.  A type 1 diabetic herself, she offered me support & advice that was a life preserver for me in those initial weeks.  We were able to meet Mary this summer at the DFM's offices when we learned how to use Reagan's insulin pump.

I was also put in touch with Ms. Christa Wade, whose son Connor was diagnosed with type 1 in the fourth grade.  I sent her a few panicky emails in those first few weeks that make me blush now.  We met Christa & Connor & the Wade family in October of last year at the Juvenile Diabetes Research Foundation's Walk to Cure Diabetes.  Connor is a sophomore in high school, & his presence at the school Reagan will attend in the coming years is something that will give me needed comfort as I prepare to leap another hurdle.  It's one thing to send your baby off to school for the first time; it's another thing entirely to know someone else will be checking her blood sugar, & dosing her insulin for lunch.  In addition to tattooing my cell phone number to Reagan's forehead (alongside a note that reads: Don't feed me carbs!), my other instructions for Reagan's caregivers, if anything odd happens, will be to go find Connor (maybe I'll put him on retainer).

One thing I have learned after talking with doctors & nurses & diabetics is that a diabetic knows what to do, not because of their medical degree, or what the latest study found, but because it is their life, all day, all night, every day.  Diabetics don't just know that fifty is a low; they know what it feels like to have their system, their brain, starved for glucose, to scramble for something, anything, that will eat up the excess insulin in their system.        

Through Facebook, I've discovered that a handful of people I've known for years are diabetic.  It's so nice to be in touch with people who speak Diabetes, because it is truly a language all its own.  To Mary, & Connor, & every type 1 diabetic, those I know & am in touch with & those I don't know, you are my heroes.  I know.  I understand what your daily life entails, what you have to think about & calculate in order to enjoy ice cream or pizza, what you worry about every night when you go to sleep.  I pray every day for a cure, often mentioning your names in my prayer.  I want a cure for Reagan, & I want it for you, too.  I am so thankful Reagan has countless examples of diabetics who don't allow this disease to limit them in any way.  

If I were to script a movie, or write a book, about this, our first year with diabetes, the opening scene would be my visit to the pediatrician the Tuesday before Reagan was diagnosed.  It would feature a worried, bedraggled mother, clueless as to what is ailing her three-year-old, & an infant whose only goal in life is to nurse as much as possible, sleep be damned.

The closing scene would take place in the same office, with the same smiling pediatrician, & feature a slightly thinner, better rested mother wrestling with her robust, fully weaned toddler while she explains in detail for the curious doctor how she cares for her diabetic daughter.  Then, were I the author, I'd cut to a shot of Reagan at home, riding her bike with Nana who kept her during Henry's appointment.  Life, like a good novel or a well crafted speech, is cyclical.  If you pay attention, there are always reminders of where you began, & how far you've come on your journey, the present often shedding glorious light on a past that was, at the time, unimaginably dark.
   

AZ