Sunday, January 13, 2019

Diabetes: Five Lessons in Five Years

Good evening.

To commence the year's blogging I shared this last week if you missed it. I remain in shock that it is 2019. Over the weekend Britney Spears tweeted to mark the twentieth anniversary of the release of Baby One More Time. I mean, what? Twenty years? Where did our youth go, Britney? 

Despite my reluctant acceptance of the dawning of a new year, I did do a few productive things last week. I made a trip to Target &, among other things, I bought a planner for this year. The kids returned to school last Monday. Inevitably over the course of the week they brought home a variety of papers alerting me to upcoming events, & so I bought a planner because I am long past the time I can rely on my brain alone to keep me organized. I do make a lot of lists in my phone, but there is still something about that hand-pen-brain connection that helps me. 

Like many of you I watched Alabama & Clemson play last Monday night. If you saw the game you know I enjoyed it. I don't know if Nick had a rare off night or if Clemson is just that good. I suspect it was a bit of both. Congrats to Dabo & his team. Regardless of your college football loyalties, you just cannot help but like Dabo.

Every year on the Monday evening of the national title game I am, even if only momentarily, taken back to January of 2014 when Auburn played Florida State University to determine the 2013 college football national champion. I am working from memory here & am not going to bother looking it up, but I believe Auburn lost that game. 

Auburn's loss was background noise for me that Monday night. Henry was about seven months old, & Reagan had just turned three, so basically everything in life was background noise to me at that point. I recall being especially distracted that night. I tried to watch the game, but I grew concerned about Reagan when she uncharacteristically fell into a deep sleep on the couch early in the evening. 

Sure, Reagan was three, but for about a week or so she'd seemed sleepier than usual. She'd had a few meltdowns that seemed odd for her. She looked okay; there was no rash on her skin or anything. She wasn't running fever. Her nose wasn't running. She hadn't complained about anything hurting. I was always on the move during the day between keeping up with Reagan & nursing Henry, so I didn't have much time to sit & think. In the back of my mind was this niggling worry for her, but given there was nothing concrete on which to pin my worry & the fact that I was overly tired, I was caught in a cycle of worrying & then telling myself to calm down because I was just tired & looking for something about which to worry. 

Another week passed. I returned to teaching at Delta Community College after the month-long Christmas Break ended. I taught classes on Tuesdays & Thursdays. I was carrying a breast pump with me on those days & pumping milk in between classes. I was crazy, in retrospect. Things got crazier on Thursday, January 16 when Trey called to let me know he was headed to the ER with Reagan. 

Two days prior I'd taken her to see her pediatrician because I was convinced something was wrong. She tested negative for a variety of things like flu & strep. She still wasn't running fever. Unfortunately neither her blood nor her urine were tested for any reason that Tuesday when I took her to the doctor; either would have immediately alerted any doctor to the severity of what was happening in her little body. 

When I left the pediatrician's office that Tuesday I was, in retrospect, anguished because I knew the antibiotic we'd been prescribed likely wasn't the answer to whatever ailed her. I'd considered everything from some weird flu that wasn't registering on a test to cancer to some strange new virus they'd not yet discovered. I'd considered everything, that is, except what was immediately obvious when the results of her blood work came back that Thursday afternoon in the ER: her blood sugar was 630; on January 16, 2014, my newly three-year-old little girl was diagnosed with diabetes.  

Trey went to get her out of bed that Thursday morning, & she was so listless she could barely hold her own head up. He left the house with her & took her to see an ENT doctor who is a family friend. We'd been to the pediatrician already, after all, & short of the ER we didn't know what to do or where to go.

The ENT didn't know what was wrong with her, but he was worried about meningitis, & so he sent Trey to the ER with her. When Trey mentioned meningitis to me on the phone I told him, as I flew from Delta Community College to the ER (breast pump in tow), to tell the ER doctor not to perform a spinal tap on her until they'd seen her blood work. I didn't think she had meningitis. I felt like the blood work would reveal something, & it certainly did. 

The diagnosis was, in a way, a relief. It was an answer, an answer that explained everything I'd observed over the weeks prior. She was dying; her body was shutting down as her insulin-producing cells died off. Technically we are all dying, every day. There are reminders that come gradually at first & then with increasing fervor as we age. With Reagan, in those weeks prior to her diagnosis, it was an unnatural, quickened process, one that thankfully was put to a halt as soon as we got some insulin in her. 

Despite the blow of her diagnosis, there were some wonderful, beautiful moments in her PICU room. They hooked her up to an insulin drip, & she came back to life. Her cheeks filled out, & she was bouncing around her room in no time. Her appetite returned. Her sugar returned to normal range relatively quickly. The extended, four-night stay in PICU was as much for her caregivers as it was for Reagan. Once you sit down & wrap your mind around the diagnosis & cry when you see what the insulin can do, you realize the next step is to take her home &, well, manage this disease for the rest of her life. 

I cannot believe it's been five years. I am rambling, & so I'll move on & share what I initially planned to share, a list of things I've learned in the five years since Reagan's diagnosis.

Oh wait. First here are some pictures from Reagan's time in the PICU.

Okay, now here is a list of five things I've learned in the five years since Reagan's diagnosis:

(1) The human body is amazing

Perhaps this is a strange way to begin a list of things I've learned since my daughter was diagnosed with a chronic disease. When something goes wrong in the human body & your child's life depends on you learning how to compensate for it, you cannot help but learn about all the little miracles that happen daily, constantly, when things are working as they were designed to work. So, yes, a diabetes diagnosis circuitously reaffirmed my belief in the existence of an all-powerful Creator who purposefully knit me together. 

Reagan's body not only makes no insulin, which is an essential hormone (even if you eat no carbs your body needs insulin daily . . . & it needs extra insulin when you are sick or growing & also at a variety of other times), her body also doesn't regulate her sugar in any way at all. She doesn't produce insulin, & she doesn't release glucagon when her sugar is too low. We compensate for these necessary processes with injectable insulin & food containing carbs (or, if needed, injectable glucagon . . . though this is only necessary if she cannot swallow &/or keep liquid down) to try & keep her blood sugar in a normal, healthy range.

Despite what we know after five years on the job & despite the many advances of modern science, we cannot perfectly replicate the functions the body performs with exact precision on its own in a non-diabetic. You don't know what you've got until it's gone. This is certainly true of a functioning pancreas. 

(2) People are good & kind 

I missed book club on Thursday, January 16, 2014, because I was in the PICU with Reagan. I was probably in shock & didn't really want to talk to anyone other than Trey or a doctor. I'd planned to attend book club that night. We'd read The Book Thief, & I'd been pretty vocal about my excitement over the impending meeting to discuss it. I needed to let someone know I wasn't coming, & I didn't see any reason to lie about my reason for missing. I posted a note on our Facebook page. It was, in retrospect, good for me. It wasn't a loud, public announcement to the whole world, but a note to a handful of close friends stating that I wasn't going to make it because we were at the hospital with Reagan who'd been diagnosed with diabetes. It was probably the first time I typed those words. It was a baby step easing me into our new reality.

Trey stayed with Reagan overnight that first night so I could stay at home with a still-nursing Henry. Once Henry was asleep beside me in bed that night I was alone with my thoughts for the first time. I opened Facebook & reread the comments on the post I'd made for the book club ladies. It would not be the last time the words of others would encourage me. Soon I was introduced to a plethora of people, other diabetics &/or their caregivers, who have & continue to provide me with everything from practical advice for handling this disease to emotional support.

(3) I am important 

Mamas of little people never have to wonder if they're needed. They leave your body after nine months, but they are not ready to be far from you. When your child is diagnosed with a serious illness, especially a chronic illness that requires constant attention, you become not just a mother but a nurse. I am effectively on call all the time. If she's not with me my phone is always on my hip. At the end of a day I can tell you what she has eaten that day & how many carbs she consumed that day. There is no one who could step in my shoes & do what I do immediately, not even her pediatric endocrinologist. Diabetes is a disease diagnosed & treated using science & medicine, but day to day dealing with diabetes is an art. I listen to her doctor, & her doctor listens to me.

I say all this not to let you know how important I am but to say that this knowledge is both empowering & exhausting. I am glad I can do what I do for her. There are diabetics whose parents either don't know enough &/or don't care enough to involve themselves in their child's care to the extent they should. You have to be vigilant. You have to wake up in the middle of the night a lot. You have to stay on top of it no matter what else is happening. You cannot forget to fill prescriptions. Small mistakes can lead to big emergencies. You have to make hard decisions about seemingly daily, trivial things like birthday parties & doughnuts, decisions some parents do not & never will understand. My point in saying all this is that while it is always nice to feel needed, to feel this needed is overwhelming at times.

I am so proud of her. She is only eight & continues to take more of a role in her own care. It is certainly easier now than it was five years ago if only because she can readily vocalize how she feels. I am not as necessary moment to moment now. I do despise that as the burden on me shifts to her as she ages it means she is gradually taking on the full burden of her disease. I hate that, which leads me to the fourth thing I've learned in the last five years. 

(4) Life is not fair

I don't know that there is much to say regarding this. We all know this intellectually. The temptation to wallow in it all is strong when your beautiful little three year old is diagnosed with an unfathomably cruel disease for which there is no cure. The word chronic is a hard one around which to wrap your mind. 

One morning last year a coach at Ouachita Christian School was leading the daily prayer over the PA system. I was in my room, still half asleep, sipping coffee & shushing seniors as the prayer began. He began his prayer this way, "Dear Lord, thank you for today, a day that was not promised." I latched on to that phrase, a day that was not promised

We are promised nothing on this earth. I am not owed a thing. I was not owed two beautiful children. Every day is a gift. Every day of health is a gift, & you have to have that mindset to get up & confront diabetes day after day (night after night). You have to understand all your organs keep functioning day after day by the grace of God. You have to look at every little thing that goes right as a miracle. 

(5) Life is precious & worth the struggle 

I am, as you know, pro-life. I am for life. It's unfortunate that pro-life is a term so closely & strictly associated with the abortion debate. My pro-life stance fuels many of my beliefs & some of my daily actions. I am of the mindset that we should always fight for life. Trey & I own guns because we are pro-life; he wants to be able to preserve his own life & the lives of those he loves should the need arise.  

To be pro-life is to defend life in & out of the womb. At a time when suicide rates are climbing & hopelessness claws at so many, Christians ought to loudly & persistently let people know life is a precious gift. Our culture denigrates life at every turn, telling young women they can end the life in their womb & lauding euthanasia as a dignified way to take control of one's own death. That last word, control, is truly what drives both abortion & euthanasia. We want control over everything; we want to play God by pretending we have the moral authority to snuff out His most precious creation.

When I think of how haphazardly some toss life aside I almost cannot fathom it. It is no wonder we lose so many to suicide given the messages we send young people about the value of life. How can we convince them their life is valuable when we praise the slaughter of the unborn with the same lips? Make no mistake; the Lord hates death. It was not part of His original plan. Death is the result of sin, & sin sent His son to a cruel death on the cross.  

I hope we send a message to Reagan every day that her life is sacred & valuable & that the struggle is always worth it. Thank you to those who have prayed & continue to pray for her. She looks perfect on the outside, but internally her body wars against her every day. She is a blessing & an inspiration.

I hope you all have a wonderful week. Wake up every day & remind yourself that you've been gifted another day that was not promised. 


No comments:

Post a Comment