The roller coaster we call our life continues to take amazingly swift turns, upside downs, and even inside outs that catch my breath - far longer than my comfort zone says I can handle. It mirrors the inner, spiraling jumble of emotions, thoughts, to do lists, and worries creating a cacophony I struggle to separate into a series of coherent thoughts. I'm losing that battle, and needing to write down baby steps that I struggle to follow each day. I'm learning so much about myself, perseverance, the desire to perceive Good and the tenacity of fear.
Miss N starts pumping in 11 days - saline only to start, but the doubts and worries grow wilder as the days continue to dwindle. Miss N, sick and tired of swift swings in BG, up down , up down, hold on tightly, this is going to be a bumpy ride.... calls softly through silent tears, "Stop the ride, I just want to get off for a minute - catch my breath, you know?" But, we can't.
I've avoided the blog, facebook, email, even texts - I don't know how to take the myriad emotions and force them into words. Doubt that any can or will do this maelstrom justice. So many What Ifs demand my attention, force me to second and triple guess our decision to pump. I read horror stories about insulin pump starts, little reassurance that we could preserve an ounce of sanity in our start - no, only that the first month or two are much like diagnosis all over again. I'm not certain we're ready. I too want off this ride - just long enough to take a deep, empowering, energizing, calming breath... to ground myself in certainty that We Can Do This, but it feels like the universe stopped listening.
I sleep through alarms more than I hear them lately. After a five day hiatus from all things online, I return to the news that four more dear souls left us far too early - all due to complications of severe hypoglycemia. The biggest, darkest, deepest fear raises its ugly head, maw poised ready to strike, toxic doubt and worry dripping from steal sharp fangs ready to slice through my mind... What If?
I steady myself, try to gain purchase on firm ground - I can't allow myself to go there. Images of high BG induced DKA coma, hospital beds, those first days of diagnosis run rampant behind closed lids, refusing to settle. That's not going to happen, I promise myself, my daughter.
Brother Bear exudes irritation at the time this illness consumes, at lost moments for idle conversation during our pre meal preparations - now consumed by math, ratios, permutations. "When will this get easier?!" he demands. Not now, not next week, I think quietly to myself. Miss N hides tears that spring ready in response to her brother's irritation.
School doubts the truth of rampant illness scurrying through our collectively diminished immune systems. With unbelieving eyes that dismiss the emotional and physical toll of chronic illness on our family unit, teachers and administrators ridicule their perceived lack of effort, and I silently scream in protest. Damn them - these children work hard for the outer appearance of normalcy, the string of high B to A marks decorating their papers, the less than stellar attendance sheet full of tardies and absences due to circumstances outside their control. This is not for lack of trying, and only as a result of the invisibility of their nemeses do these Educators in positions of Power get away with judging and demeaning my children. But the anger only serves to fuel the fear, and I try hard to let it go.
I thought we'd have collected the funds for a continuous glucose monitor by now, but no. My family has worked insanely hard to put together funds to help, and we're closer, 10% of the goal achieved, but not close enough - not hardly. The insanity of pumping insulin without the aid of a CGM confuses me endlessly, and back I circle to the What Ifs - what if I can't get back to waking every 2 to 3 hours? What if I sleep through the alarms like I have been - on the pump, that could be disastrous!!
Close my eyes, breathe. A picture of others who should be helping pops up, unbidden, and the tears course down the tiny rivulets ingrained in my cheeks. The lack of understanding, belief, the failure of participation in a child's life - the emotions elicited twist my gut, deepen the sensation of deprived air, causing me to grasp for tiny breaths.
Close eyes, calm myself, slow breaths, be easy - trust. So simple, yet difficult to manage. I repeat the mantra, nearly a desperate plea for help by now:
The Universe is Honorable. The Universe is Honorable.
an attempt to restore my sense of faith, my belief that our needs will be met, my desperation for assurance that Miss N will not become yet another statistic, that Brother Bear will escape the trials of becoming a forgotten soul, that our family will survive this challenge. We've overcome so many, what's one more? I want to believe that, to believe in Us ...
I need to remember, to slow the ride down if I cannot make it stop. Worry is nothing more than a prayer for what I fear most; The Universe is Honorable.
Beautifully written, Kirsten. You are going through a very tough struggle. Continue in faith that God will provide what you need. He is in control, with ultimate sovereignty. Take a deep breath and know that he can bear the weight of each day as you face it. You are in my prayers. - Guinn
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