Tip of the Iceberg

Tip of the Iceberg

November 25, 2014

Type One Diabetes is like an iceberg; people do not see what is going on beneath the surface just to stay afloat.

I was inspired by this photo.  First off, icebergs totally freak me out; Diabetes freaks me out at times, too, and I could not think of a more fitting analogy.  T1D does not look like much above the surface, but underneath is a massive complex disease that requires constant vigilance to stay afloat.  Faltering leads to the iceberg breaking or sinking.

10th birthday,  Oct 2014

What you see when you look at my cute boys is only the tip of the iceberg.  Two little boys who, from the outside, are seemingly perfect and healthy.  Two beautiful boys who are funny, witty, and smart.  Two little dudes who make good grades and are classroom leaders.  Two little men who want to be doctors when they grow up. Two little guys who do not have one functioning pancreatic beta cell between them.

What you see on the outside is only the tip of the iceberg.  They look so good because of what goes on underneath.  In order to keep the iceberg afloat, a tremendous amount of work, worry, blood, sweat and tears occurs under the surface.

Under the surface is a Dad who takes full duty when Mommy is away.  He handles insulin dosing, pump changes, and monitoring with a side of fatigue and worry.  He works hard to analyze the available medical coverage so we can obtain all the latest gadgets possible to keep the tip of this iceberg afloat and majestic.  Under it all is a Dad who loves his little clones and spends the majority of his annual bonus in healthcare spending and a chunk of his paycheck bi-monthly so we can take care of ourselves. 

Mommy and Daddy Pancreas at the JDRF One Walk, 2014

Under the surface is a Mother who is worn to her core with worry, analysis, late and long nights, and fear. She has to put her own care and needs on the back-burner for the sake of all of her kids and is aging exponentially form the unrelenting fatigue. Under it all is a Mommy who still gets choked up when she remembers the day she heard, “Get him to the hospital now!” and "You've got another one!".

Under the tip of that iceberg is a load of math, voodoo, science, sorcery, and luck.  Every morsel of food that is consumed must be measured and considered.  How many carbs does it contain? How many fat or protein grams? How will this impact his sugar now?  Later?  Does he need insulin for it?  How much? Every. Single. Bite.  Nothing gets zero consideration.

Yep, that's me..with bigger boobs, trying to mix the right potion to make it all go away

Beneath the exterior are the gadgets we use to help make their complicated little lives just a little easier. An insulin pump to deliver insulin constantly (basal) to keep his organs working AND when needed for food (bolus).  An insulin pump that has to be changed every two to three days and requires a biting STAB for insertion. A device that is taped to their terribly sensitive skin.

Asa, forgetting he has an insulin pump on his right arm, Dexcom on his left

Also attached to their sensitive skin is their Dexcom CGM (Continuous Glucose Monitor).  This is a tool only to help us monitor rising and falling glucose levels.  Synced with NightScout, it wakes us in the night to alert us if something is wrong…in addition to the several times per night we wake up on our own and look at the screen.  Dexcom is a tool only.  We still have to stay up at times.  We still have to use our brains to process all the information.

On a rare "quiet" night, we still wake up multiple times to check

Under the iceberg’s peak are two home glucose meter systems (complete with meter, alcohol prep pads, strips and lancets) that are used 4-10 times per day to poke a tiny hole in the tips of their fingers, draw out blood, and give us a glucose measurement for the moment…this moment only.  It changes minute to minute.

Below the surface are two tired parents, two humans functioning as someone else’s organ, two brains that have to put it all together.  Every meal. Every day.  24/7. No vacations or reprieves.  Someone is always thinking.  What is his sugar? What is he eating? How many carbs? Dose the insulin based on the preceding three questions.  Watch and wait. Unexpected and predicted changes happen daily because Mr. Diabetes does not play fair.  What works today may fail tomorrow. Levels are impacted by stress, activity, age of the pump site, age of the insulin, color of his underwear.  Some days are good and it all works.  Some days make zero sense.  Diabetes does not play by the rules; He runs his own agenda.  It’s baffling at times.

Under the surface are siblings who care and who have to be on the lookout for their baby brothers and grandparents who work hard to help. Beneath it all are school teachers, staff and nurses who have to step outside of their comfort zones, with fear, and help two little boys stay healthy and safe while maintaining a piece of their normalcy and childhood.

Under the surface are quarterly venipunctures and Endocrinologist visits, $ . Annual (and as-needed) visits to the Pediatrician and Ophthalmologist to monitor for problems and keep them healthy, $. Beneath it all is a Momma Bear who will lose her marbles if you bring your “simple cold” cooties around her vulnerable babies, because simple for you can mean pain, complications, and hospitalizations for them, $.

Under the surface, despite it all, is a Mommy Pancreas who is so proud of these tough smart little boys and who is so grateful to be able to hold them and hug them every day.  Below the surface is a Mommy who is grateful to watch them thrive and grow, listen to their corny jokes, and referee their fights.  Underneath it all is a Mommy who is both proud and saddened by how much they know about their disease already.  Under the surface is a Mommy who can’t fix it and who would give her life to keep this iceberg afloat so that all outsiders see is the tip… two beautiful, smart, funny and otherwise healthy boys.

Rhonda