The ONLY Day-In-The-Life He Knows

It is 3:30 am.

I am up.

I am up for the day.

Sometimes my urge to write something down is so strong that I cannot go back to sleep after the 3am blood sugar check. This occurrence is relatively frequent, hence the "diarrhea" of my fingers.

The posted photo...the one that looks like a "great-now-I-gotta-make-up-the-grams-of-that-jelly-smeared-all-over-his-face" photo was what had me up and shuffling through a heap of old pictures that I have shoved half-haphazardly in a box. It is perfect for today's post on so many levels. It was taken "pre-diabetes", so no worries on the "carb-making-up". It was toast and jelly; the same thing Joe was munching on yesterday when he stated without emotion ... when he stated, matter-of-factly, that he hated diabetes. He continued on, void of emotion, that he hated everything about it. This picture represents a time before "D". Joe was two. Joe does not remember this picture. Joe does not remember a life where that jelly would not have to be "made-up" for in carb grams.

I help organize our JDRF Walk Kick-Off Luncheon each year.

This year, during the luncheon, we are going to be sharing how our "stories" are powerful tools in raising awareness about type 1 diabetes and ultimately, through the telling of our stories, the importance of a less laborious and rigorous treatment regimen and the need for a cure will be appreciated by the general public.

I asked Joe if he would like to talk at the luncheon about his life with diabetes.

His answer was, "What would I say? ..... I don't know what it is like."

I followed up with, "What do you mean Joe? How do you not know what living with diabetes is like? You have had it for four and a half years..."

*pause*

"Mom, I know no different..."

*WoW*

*my spawn is "deep"*

My response was something like, "So, you don't feel like you can talk about life with diabetes because you don't know how it differs from a life without diabetes ... you don't remember what it is like to not have it?"

"Yes, exactly..." in a lightly kissed, lisp-y, nasally Joe voice.

Well, fuck-stix. (Is that a sentence? noun (x), finite verb (x) complete thought (x)).

I have thought about this very topic over the years. At diagnosis, people were even so bold as to state "... blah...blah...blahbitty...blah.... at least he will know no different". Yes, true. He won't...He knows no different. He does not know what it is like to sit down with a box of crackers or a sleeve of cookies. He does not know what it is like to eat a meal without piercing his finger with a needle beforehand. He does not know what it is like to play a sport without frequent blood sugar monitoring. He does not know what it is like to not fear a low. The list is infinite. The list is life-encompassing. The list is somewhat sad.

Not sure how I feel about all of this... yet.

A day-in-the-life of knowing nothing else for his day-in-the-life.

You Have NO Choice, You HAVE To...

Rough night ~

Several insulin correction doses through the night at two hour increments, a site failure, and subsequently a whole site "change-out" at 1am...another correction, a ketone check, a water re-fill, and a "tuck-in" of Joe, after the previously mentioned rendezvous between a needle and his ass cheek was our night last night. This is the reality of some of our nights. Most likely, our night sounds familiar to many of you. You live this. I live this. Our families live this. Live this way.

I may not know your diagnosis story. Your grief steps and stages may differ from mine. Your grieving timeline may have been quick. Or, it may have been tedious and long. Possibly, it oscillates back and forth on a grief-like pendulum, as I believe mine does.

What I do know, what I can tell you, is that it does get easier. I cannot tell you when. I cannot tell you how, but it does. Time helps. Living through it, although painful, helps. Family helps. Friends, they help.

Your circumstances in this life are, most likely, different than mine. Your support systems, your financial status, your vices vary from mine.

That is OK.

This is no matter.

What I can tell you is that you will make it through. When times seem bleak, your drive and determination to care for your child will see you to the next blood glucose number, to the next site change, to the next meal to carb count. You have no choice. It is your lot in life. You will do it. You will do it for your child. You will do it for you.

I am not sure if you are able to check a blood sugar, or give an injection, or insert a pump site without your child wincing or tearing-up. I know we still endure that here, sometimes... over four years into type 1 in our lives.

This I know. Sadly, it becomes easier to see the winces, to experience the cries, and to carry-on with business as usual. It is what must be done. There is no choice. You will do it. You have to.

How many tears have you shed since your child's diagnosis? This I do not know. I am sure it differs for us all, just as the grieving process does.

What I do know is that there will be rough patches no matter how much experience you have with managing diabetes in your child's life. You will be challenged. You will falter. You will learn. You will carry-on. You have no choice. You have to.

The instability of your child's blood sugar numbers, the "no rhyme, nor reason", the frustrations may visit you frequently, or ocassionally, or rarely. I don't know what you are currently enduring. I don't know your unique situation. I am unsure of the struggles you are facing presently.

What I do know. What I can tell you with certainty...especially those of you with young, young children with diabetes...is that the numbers will even out a bit. The variances will become less extreme. The lability will stagnate. You will sustain without yielding. It may be years of managing challenging numbers. It will knock you to your knees begging for mercy. It will challenge your mental and physical well being. However, you can do this. You will do this. You will do it for you. You will endure it for the love of your child.

And...

Perhaps that is why so many of us struggle. There was no choice. We do not have a choice. Our children do not have a choice. It just "is". So we do.

And...

I am thankful for the opportunity to be able to.

A day-in-the-life of hope.

Today, 'Diabetes Is A Big Fat Turd' ~ Joe Maher (2010)

I had a "clever title" of "Oh NO, Not Chicken Marguerite On My 550-Thread Count Sheets!" ... and ... somehow I wanted to add into the title that a massive blizzard hit and there are a couple of neighboring counties declaring a state of emergency.

You get the picture?

Can you begin to create it in your mind's eye?

The slimy partially digested pasta, with the chunks of masticated chicken mixed with the tomato-sauce-laced-chyme (you all know I am a descriptive writer by now ~ sorry, couldn't help myself). Loads of this dish was up heaved last night; some of it all over the master bed's white pima cotton, plush thread count sheets... some of it in the stainless steel, "FBB" (family barf bucket).... I was up every hour and a half to two hours tending to vomit, blood sugar checks, blood ketone checks. I was determining when to give insulin to drive the ketones down. I was walking a fine line of safety between lowish blood sugar levels, ketones, and a barfing, somewhat dehydrated kid.

There is nothing, nothing, nothing, and I mean nothing that instills fear in a D' Rent like a Vomit Bug. Vomiting, low blood sugars, ketones, and dehydration are a slippery, messy, dangerous terrain to find yourself in. I hope that in writing our play-by-play (with 'Reyna descriptors') that I let other Vomit Comet D'Rents know that they are not alone when facing Emesis As Their Nemesis.

First off, I guess I should start with the whole I am not a doctor bit. Nor do I dream that I am a doctor bit. Nor do I ever wanna be a doctor bit. Please, for the love of God, get some medical advice if you are in this situation and are either a) new to diabetes or b) you don't know what the fuck to do. Do not say that 'Reyna, from Beta Buddies, told me to perform honey massages on my child's gum tissue while stabbing my kid with mini-doses of Glucagon'. They will think you are nuts.

OK?

Ok.

Here is how things went and are currently going down: It has not been pretty between the barf, the ketones, the lows, the honey on gum tissue massages, the Mini-Glucagon Dosing, and the need to keep a very 'On The Go Joe' inside on a snow day.

Here goes...

Sunday 3/6/11

5pm: Joe's BG 96 ~ The said Chicken Marguerite was consumed, all 42 carb grams worth. Joe seemed in good health. We "Pinged" him with a bolus.

6pm: Joe schooled me at Chess.

7pm: Joe's BG 101

10pm: Joe's BG 56 ~ 12 grams-worth of Glucose Tabs were "mother birded" to a slumbering Joe.

11:45 pm ~ "Beep...Beep...Beep" followed by "UhNHHH...UhNHHH...UhNhhh". Dexter was beckoning me...calling me. Joe was low. Dave had been up and checking Dexter for the past hour and a half. Dave had been continually feeding Joe sugar over the past hour or so, awaiting Dexter to give an arrow up...some sign of a "glycemic comeback".

Monday 3/7/2011

12am: BG 85 ~... Joe was whimpering ...stating that this was the 'worst night I have experienced to date' (his verbage is mature even when times are dire). He was clutching his stomach. He was writhing in discomfort. He finally 'blew' his gastric contents all over my bed. New pants were placed on Joe, sheets were changed, vomitous was washed off the soiled sheets. The sheets were placed in the washing machine. Joe's blood ketones were 0.7. I do nothing. I wait. I have experienced a few of these GI illnesses in my type 1 kid. I was comforted by the mini-dose Glucagon protocol. I was comfortable letting the ketones hang up to about 1.o, or so. In my exhausted state I forgot that we were getting slammed by a blizzard and that "outside help" would be difficult to obtain, if needed. Ignorance was bliss.

2am: BG 110, blood ketones 1.1 ~ Joe "ralphed" again. I waited. I was still not ready to initiate the mini-glucagon protocol. I was not ready to crank up a temp basal AND I was not ready to bolus.

4am: BG 155, blood ketones 1.5 ~ The Chicken Marguerite was not very "discreet" and made yet another tomato-y appearance. I am more comfortable with the BG of 155. I am not comfortable with the direction of the ketones. I correct with 0.25 units of insulin.

7am: BG 143, blood ketones 1.1 ~ Joe was ready to try sips of water. A correction 0.25units of insulin was given.

9am: BG 85, ketones 1.3 ~ Joe wanted to try a little breakfast. For this, I was thankful. I was hoping the first WHOPPING dose of insulin would smack those ketones down to size. He ate. I waited to bolus. I waited to make sure his evacuous stomach would tolerate the food. It did. Joe stated he felt 'fine'. I bolused....I gave him a 2.9units for a 44gram breakfast. I used a slightly softer ratio than his normal setting. I was sensitive to the slowed absorption issues that a post-GI illness may cause.

I waited for the next blood glucose and ketone check, while shoveling 24+ inches of snow with Dave by my side. The winds were howling. The drifts were 4 feet high. As the sharp crystalline flakes whip and smart my face and my eyes, I barely make a dent in the mountains of snow drifts left in the wind's wake. I am faced with the fact that we are essentially snowed in. I am grateful I didn't think of this fact last night during the vomiting orgy. It is easy to forget how fragile Joe's physiological well being can be at times of illness. It is easy to fall into a false sense of security. It is easy to be deceived by "D".

Enter Honey On Gum Massage, Lollipops, and Mini-Glucagon...

11am: BG 73, blood ketones 0.2 ~ 10 grams of free carb...great on the ketones, "doh" on the blood sugar. I should know better!

11:30am: BG 52 ~ 15 grams of juice.

11:57am BG 52 ~ Apparently the carbs aren't being absorbed from his food into his blood stream. Two plans are proposed to Joe. Plan A: Mini-Glucagon Dosing. Plan B: Honey Massage on his oral mucosa. Joe was adamant about not wanting the Mini-Glucagon yet, so Honey smeared on his gums it was. I also gave him a lollipop. I thought the bulk of that would hopefully get absorbed orally and not "gastrically".

12:45pm: BG 60, ketones remain 0.2 ~ The "Oral Mucosa Plan" was determined a "fail". I am done with pussy-footing around and am ready to jab in the Glucagon. I have Dave reconstitute the Mini-Glucagon (he doesn't have experience with re-constituting it and we thought it would be a good time for him to "practice"). I drew up 7 units (1unit per age in years) in an insulin syringe and injected Joe subcutaneously with Glucagon (just like how you would give an insulin injection). I also decided to decrease the pump basal rate by a "gentle" 30% for 4 hours, keeping in mind to watch for ketones with the decreased insulin on board.

1:15pm: BG 175 ~ Joe was hungry and wanted lunch. A PB and J is "ordered" and constructed. No bolus is given to cover the 41gram sandwich.

2pm: BG 133...Dexter is "flat-lining" at a 146 ~ Still no insulin was given for lunch. Concerning? Yes. Joe was now begging me to let him play outside; to play in the 28 inches of snow. I refused. Joe bawled.

3pm BG 146 ... Dexter remains "flat-lining" at a 133, blood ketones remain acceptable at 0.3 ~ Joe was adamant that I let him outside. I cannot. I don't have faith that his blood sugar will hold.

I am a Pancreatic Cowgirl , as you guys know. I have even let a "24" Joe sled after the 24 was "mother-birded" with 16 grams. I am not a "Pancreatic Tight-Wad". It has been a tough day keeping Joe "down". It has been a tough day telling my son 'no', due to diabetes.

His eyes are shiny with tears.

A day-in-the-life of acknowledging that 'Diabetes is a big fat turd'.

Always

As many of you know, my 7 year old son Joe has been living with type 1 diabetes for over 4 years now. He has been living with the rigorous daily regimen that "d" demands of him for over half of his short, sweet life.

Over the years I have been left to wonder when will Type 1 Diabetes in my son's life stop breaking, chiseling away at, wearing on, and weighing down my heart.


When will I stop grieving?

Will I always be one string of non-euglycemic numbers away from a minor melt-down?

I believe I still mourn the loss of Joe's beta cell function because he cannot just sit and eat crackers out of a box or cookies off of a plate "mindlessly". Carbs must be counted. The pump must be programed. Insulin must be delivered. Food must then be consumed. Not eating, once the insulin is administered, is not an option. Sadness ensues as I witness the wince cross Joe's face while I insert needles into his flesh for pump site changes and CGM insertions. The sadness comes not from the pain that I am causing him, but from his attempt to hide his discomfort and pain from me. He, in essence, is trying to protect my emotions by hiding his. And, again, grief weighs on my heart a bit more as Bridget and Joe put aside much of their chore money to "fund" a CURE, as Joe states "I just want diabetes to end". The heaviness in my chest stems from my lack of faith in a CURE for Joe. Sad. True.

Our journey of managing blood sugars from meal-to-meal is exhausting. Managing diabetes from activity-to-activity requires thoughtful planning and critical thinking. Tweaking pump settings and bolusing insulin from blood glucose number-to-blood glucose number demands continuous attention to detail. Diabetes care never ceases as it is with us every night, through our days, during holidays, during illnesses. It is with us every trip to the store, to the park, to the gas station. It is with us while we are driving. Our journey of delicately balancing judicious diabetes management in a young, growing, active child, while considering the psychosocial impact that this kind of tedious, rigorous, never-ending care demands of us ... that type 1 management demands of Joe ...will always demand of Joe is essentially unexplainable. However, I do try, here on Beta Buddies. I believe my flits (word? I dunno) with grief and sadness stem from the "never-ending-ness" of the care and the isolation that results from this sort of life. It is difficult to explain the routine, the regimen, the tweaking, the boosting, the sleepless nights to those that do not live it. At times, I feel alone....

At times, not only do I feel alone, but I feel there is a part of me missing. The part of me that used to be a good friend, that was a kind neighbor, that had the energy to be a thoughtful human being. You see, there are times that there is absolutely nothing left of me to give. I am spent. I am caught up in the numbers. I am tangled up in the psycho-social web of diabetes land mines. The sad thing is, many people don't get that the impact of 24/7/365 meticulousness and care can fuck with you. It saps your energy. It leaves you feeling depleted. There is rarely a break or reprieve. What gets to me the most is that I am only here to help shoulder the weight of "D" care for the short-term. It is Joe who will endure the enormity of it all for his lifetime.

For the most part .... I find I am fine. I have my chin up, with a smile plastered on my face. I suck it up, with a smile plastered on my face. I can "take it in the ass at the arts"...again, with a smile plastered on my face.

At times ... I still struggle... Tears. Isolation. Frustration.

Always ... Lora, Meri, and Donna, I "get it." Type 1 in our children's lives is a constant. It is not going away. Ever.

From the "Irony Of Time" ...

'Seconds, minutes, hours, days, weeks, months, seasons and years, funny how the "measures" of time all blur and meld together as one long stream. During them, you can suffer the most monumentally painful events in your life. Each minute seems an hour. Each hour seems a day. Each day a week. Each week a month...and so on. Four years ago today one dip of a stick into my son's urine changed my life, upheaved my family's life. It was one of those "clock stopping" moments. The type 1 diagnosis and it's sequella froze me in "time" for a bit. No matter how hard I tried to deny "It", no matter how hard I tried to ward "It" off, no matter how much I wanted to tell "It" to "go to hell" and to leave me, my family, and my baby Joe alone, "It" was there. "It" was going nowhere. Time had stopped. I was "stuck". "It" wasn't necessarily "d". I believe "It" to have been "grief".'

A day-in-the-life of understanding.