Recently, while at the endocrinologist for my own routine Type One Diabetes checkup appointment, my doctor and I were discussing the recent diagnosis of my 3 year old toddler.  I am overwhelmed with his recent diagnosis.  I lose many a nights sleep over what his life will be like.  I anxiously fret over his daily care to manage his disease.  I recognize the fact that I will never be able to blindly trust that family and friends can take care of him, he will not have sleepovers with anyone, without quite a bit of diabetes training. My son’s grandmother wants nothing more than to be educated on all things diabetes related, the shots and the formulas used to figure out his insulin needs, but she finds herself utterly confused and unable to do it properly.   I am often confused as well, even with my own knowledge of this disease.  There is such a stark contrast to the management of adult diabetes and children with diabetes. 

 

I am still a little angry about it all.  And in the deepest, darkest corners of my heart, I am still heartbroken and so incredibly disappointed in my own diabetic self for missing so many of the key signs that would have indicated sooner his tiny little body’s distress.

 

Being Type One Diabetic, I can’t shake the feeling that I SHOULD HAVE KNOWN something wasn’t right.  When he began urinating several times an hour, when my perfectly potty trained child suddenly began soaking himself and his bed SEVERAL times a night, when he had a simply unquenchable thirst that seemed never-ending….I should have known.   When he lost his appetite and his clothes seemed to fall off his too-skinny body, when he seemed listless and lethargic, uninterested in his usual day-to-day routine, when he was screaming from a painful and alarmingly red rash that suddenly took over his groin area and wouldn’t go away….I should have known.  And yet, unwilling to accept what I KNEW might be happening, I tried to reason with myself and find a simple explanation for it all.  He’d been in the throes of a bad winter cold at the time, and my hopeful mind was trying desperately to believe that all these things were related to that.

 

Oh, how very wrong I was.  I KNEW there was something more going on.  And I just cannot find a way to make my heart let go of that indisputable fact. 

 

It was on a simple whim one night, just before his bedtime.  After another hundred trips (or so it seemed) to the bathroom for my young tot, I checked his sugar with my own meter.  Momma was tired and cranky and ready for the peace that a child’s bedtime offers, when a number that flashed across that screen promptly plunged me into a panic I’d never experienced before.  572!  I immediately called our pediatrician’s emergency number, trying to force out an explanation in between breaths that felt so very difficult to take.  I was told to get him to the nearest emergency room NOW!  I instantly felt nausea building within and began to cry.  My husband took the phone, quickly got himself familiar with the instructions and started making the necessary calls to secure a someone to watch our 8 year old while we’d be gone.  I found myself completely unable to wait the 20 minutes it might take my mother-in-law to get there.  I zipped up my precious baby in his winter coat, hoping his pajamas would be enough to keep him warm during our ride and subsequent hospital visit.  In the most calm and controlled voice I could muster, I told my husband to meet us there.  I wasn’t waiting.

 

In the 15 minutes it took me to get to the nearest hospital with a emergency pediatric unit, my son’s blood sugar had steadily continued to climb.  There was no standard waiting in the lobby, there would be no waiting to be triaged and asked all those perfunctory questions.  The pediatrician had called ahead and alerted our arrival with this dire situation and we were promptly ushered right inside.  CRITICALLY HIGH were the words that were repeated over and over and over.  A quick check of his blood sugar once more revealed a number too high for the hospital meter to read.  IV lines were started immediately on tiny little veins that were so weakened by dehydration that it took approximately 12 pokes in various areas of his body to find a usable vein.  They wanted to give it one more try before they would be forced to do a central line. Lucky number 13??  My poor baby had screamed with each and every poke.  He begged me to make them stop, while three strangers in scrubs pinned him to the bed in an effort to get a good vein.  It quite literally broke whatever pieces of my mangled heart that had previously remained in tact.

 

In the end, they managed to get him stable with 24 hours of a PICU visit.  In the end, they tried to ease my mommy guilt by telling me that I’d done the best thing I knew how to do to help him.  In the end, they told me that had I put him to bed that evening without checking his sugar, he would have likely slipped into unconsciousness during the nighttime.  In the end, I’m still so angry that I didn’t react sooner.  In the end, I’m so furious that my son has this horrible diagnosis and there is nothing I can do about it.  This is simply something I didn’t want my son to endure.

 

In the months since Joshua’s diagnosis, we’ve managed to find a way to adequately balance the good times and the bad.  I try to gently remind myself that, while his diagnosis is tough and he has a long life of care ahead of him, there are so many parents out there who’s children are far sicker or terminally ill.  They would likely give anything just to trade me places. 

 

We diligently monitor his blood sugar.  Every two hours during the day and once at 1:00 in the morning to make sure he’s stable until its time to wake up and do it all over again.  Five to six shots a day, depending on how his blood sugar is doing and what he eats.  We have an incredible team of people that help us oversee his care. We were assigned to an amazing Pediatric Endocrinologist and his fantastic nursing staff who are available to us nearly 24-7.  We have such caring and wonderful staff of teachers and a nurse at his preschool who have managed to catch some pretty severe low blood sugars and react swiftly and sufficiently, effectively saving his young life.   We’ve encouraged him to learn to test his own blood sugar, which he has mastered like a champion.  Even at the tender age of three, I think its important for him to understand how important his care will be and I’m certain that he’s not at all too young to learn to manage certain aspects of his own care (with our unwavering supervision, of course).  He’s slowly learning to understand when he’s “not feeling right” and what it might mean.  He’s learning that its not acceptable to pretend he feels his blood sugar is low in an effort to get a piece of candy (he’s tried it a few times…and discovered that pretending will only get him an unnecessary poke on the finger to make sure he’s ok).

 

In the end…..I’ve slowly begun to accept my son’s diagnosis. I’ve realized that I’m lucky that I’m diabetic and knew the symptoms of a body going into Diabetic Ketoacidosis.  I’m count myself lucky that I had a meter on hand to provide the information I needed.  I have started to give myself the space I need to feel what I feel. I understand that I need to forgive myself for trying to deny what I already knew.  I’m not there yet, but I’m hopeful I’ll get there sooner rather than later. 

 

I’ve also discovered that, in facing my son’s diagnosis and the myriad of things required to manage his Diabetes correctly, I’m also working harder towards improving my own control over my Type One Diabetes.  I am cognizant of the fact that I need to be an example of diligent care and proper management.  I must lead by example and encourage him to take this disease as seriously as it should be taken. I need to make sure he knows, in an age appropriate way, that its quite literally a matter of life and death.  I am always hopeful that there will be a cure in his lifetime, if not in my own, and that one day there will be an end to Diabetes.

 

 

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