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.