I recently had the pleasure of visiting with some family members that we rarely get to see due to geography and the business of life. These family members include an eight year old daughter with a chronic metabolic disorder in the same ballpark as diabetes. We have a good deal in common.
I sat talking to Liz, this little girl's mother, comparing notes on what it's like to have a child with a chronic condition and what it means for the lives of family members on a day to day basis. I reflected on how my heart went out to them when I learned of their precious infant daughter's diagnosis who was, at that time, only one year old and I wasn't even a mom yet, let alone the mother of a child with diabetes.
I explained how, at the time, I didn't know where they were getting their strength to endure the heartache I could only imagine they were experiencing. I wondered how they got through it.
Liz looked at me with a mix of tender compassion for a fellow mom who now "knows", tempered with the no-nonsense, matter-of-fact attitude one develops after having to buck-the-hell-up for years and said, "Like any parent in our situation, you just do what you have to do. You find it in you somewhere to do whatever it is that you must."
I am finding that to be so true these days. I am far more sleep deprived now than I ever was taking care of newborns. And yet, somehow I only feel the effects of that occasionally and then it's just a fleeting moment of sheer exhaustion that seems to fade as quickly as it develops. It's as though I don't have time to be tired so I just ignore it.
I have noticed, especially in the last two days that I keep having to stifle an urge to just sit and weep. By no means is it coincidence that this has occurred at the same time as Jenna's pump start-up. I am once again on high alert due to this new and miraculous technology. We are still trying to learn all the intricacies of the pump and how to master it's use. Because with practice and eventual pump fluency, we are virtually assured of far better control and an easier go of things. But it's the 'getting there' that is causing the hastening of my own personal aging process.
Today was our first site change since her official start-up in hospital three days ago. I was stressed from the moment I opened my eyes early this morning anticipating this necessary task.
Insertion sites need to be changed every three days to prevent mal absorption of insulin due to a weary site and to maintain healthy skin integrity.
So Jenna was slated for a post breakfast site change and a juicy gob of EMLA was applied to the upper outer quadrant of her left little buttock and covered with a Tegaderm a good hour and a half prior to the procedure to numb the area and make the process much more kid friendly. Even still, Jenna has gone through too much these past three months to just concede to yet another procedure.
We get the job done, albeit through Jenna's tears and constant squirming, and everything seems ok. That is until an hour later, after a blood sugar check and a consequent bolus to correct a mild high, Jenna reacts to obvious pain at the insertion site when the insulin infuses.
OH GOD NO! More stress! The infusion shouldn't hurt and if it does, it could mean the cannula is situated next to a nerve and will likely need to be removed and reinserted.
I make a call to our diabetic nurse educator and leave a message explaining things. Impatiently, I call again and again over the course of the next hour. I start getting annoyed at the system and wonder why there isn't someone available around the clock; an actual PERSON who knows my daughter and all about her diabetes and can advise us of what to do in any given situation; someone who's sole purpose is to sit by the phone and await my calls for help!
This is one of those moments I want to sit and have a good cry.... but don't, of course. Instead I opt for engaging in petty bickering with my spouse and complete impatience for my older daughter and the constant stream of questions and requests that is the hallmark of any inquisitive five year old.
I pick up the phone a third time in frustration and dial her number. Her voicemail picks up immediately with only one ring and I surmise that she must have gotten my message and is trying to call me at that very moment. But my impatience is potentially going sabotage her efforts! I hang up with lightening speed and hold the phone in my hand, staring at it... daring it not to ring.
After a very pregnant pause... it rings. Relief.
After discussing the morning's events with her, we decide the best course of action is to wait until we bolus Jenna for her lunch and see if she continues to feel pain. If she does, we must do another site change.
So after lunch, I hold my breath as I bolus enough insulin to cover the carbs Jenna just ate. Not even so much as a flinch! She just keeps chattering away in her highchair examining the sticky jam on her fingers from her pb and j sandwich.
In disbelief I ask Jenna if it hurt. Completely oblivious to the emotional torment I have just endured and with the adorable coyness that only a two year old can get away with, she says "No mommy."
...and that was that.