21 January 2012
On Being Stuck
Fair Warning, this is one of those long, introspective, Oh My God I had no idea kinds of posts begun at 3:00 AM. The type I deliberate posting at all - but this is about sharing the journey, openly and honestly. For the last year plus, the roles of single mom, teen boy, tween girl, chronically ill, and chaos driven intertwined to create this reality. I'm all about creating a new one, but in order to do so, I have look at where I'm at, accept, then let go and move forward. I've never shared N's diagnosis story, and realize I couldn't as it wasn't an isolated event - it was a part a more than year long period of hell in our lives, and I - we - feel ready to move on.
I got up 21 hours ago. Before that I struggled to pull the veil of foggy sleep from my brain enough to test N’s blood sugar, only to find I’d wasted 2 precious hours in the task. Lord but I am so tired lately. Which makes the fact that I couldn’t return to sleep then, or get to bed tonight that much weirder.
It’s just that I suddenly became aware of the dark, heavy weight pressing on my chest since the previous New Year remains stead fast in its perch. It shines a gray faced mirror in my face, one into which I dare not gaze. I have not yet forgiven myself, I haven’t released the ball of sadness and anger that constantly threatens to overwhelm my very essence. I know that I need to, but I just …don’t know how to release the tether that binds me to the sense of unfairness, the wrongness in all that transpired.
We started the 10/11 school year off more frazzled than intended. Between my surgery, recovery, looking for a new teaching position, completing my Master’s degree, swim team, etc. I never managed to reset the house to a state of peaceful calm. The kids and I jetted off as soon as swim team ended for our first vacation since the dreadful back injury that ended my tour of nursing 4 years before. Jus t a quick 3 day trip up to Colorado Springs and back, but it was more than we’d done with each other in forever, and reminded me of just how much I missed spending quality time with family.
Returning home proved hard, as it should at the end of a vacation, but harder still given that I now had to return to the classroom two weeks earlier than planned. Why? I accepted both a kinder position, AND agreed to teach the extra JumpStart portion. Oh wow! My second year of teaching and I somehow believed I could transition from 5th to K and stay sane!! Honestly, I didn’t fair so badly – I adored my kinder kids…
… and then it all changed. A 5th grade position opened up in our building; would I move up, they asked? I struggled with the decision, shared concerns with my principal, checked in with family, and ultimately agreed. Sometimes, I wish I hadn’t. Sometimes, I wish I’d never returned to the school I loved so dearly. I might have avoided working alongside teammates who despised my very existence, believing I’d robbed their friend of her rightful place on the 5th grade team. Of course, I’d have to give up the year I shared with my fifth graders, a year that proved particularly special in forming a community of caring and sharing. With the year that transpired, that’s not surprising – the bond formed with students one of the few things in the year that I don’t regret.
A week into my new assignment, I broke my foot when a damaged computer monitor decided to fall on it. Not a week later, Brother Bear suffered a serious head injury. We’re talking traumatic brain injury with loss of consciousness, dislocated collarbone, broken ribs, injuries to shoulder, arm and neck. In two weeks time, I quickly lost three days of work. We shook it off, and promised ourselves it could only get better.
Not according to the dental and oral surgeries that followed, as teeth tend to fail following the summer of healing I’d just encountered. Still I pushed through, until the day came when I received a text that changed my eternity. You see, I made the wrong choice. I should have dropped everything; taken the offered leave of absence, and simply shown up – for however long necessary. Instead, I reacted. Again and again, and in the process failed the child who repeatedly called out to me for help in any way possible. In fear, I reacted to the threat of a job lost, a reputation tarnished, and allowed our world to crumble.
In the absence of needed help, he became more ill. Mornings turned to nightmares, and nights grew longer, until soon I didn’t return from work until close to bedtime, fearing what I might find upon my return home. His dad enabled him, the school failed in providing sought after help, interruptions by phone peppered my instructional day, and the caustic, toxic environment I knew as my grade level team grew worse. I fought with my children, my ex, their school, and myself. Nothing fit together well. Viruses hit our household, one after another, and still we pressed on; still my child acted out, silently screaming for help to an (unwittingly) unhearing parent, until it spiraled out of control.
Both A and N became ill yet again, but this early December morning, my heart recognized it as serious. Fearing growing reprisals at work, now devoid of the caring mentor I’d discovered in my original principal, I begged their dad to come care for them in our home, and went to work. I went to work and immersed myself in caring for other families’ children, unaware of the hell my own endured, until finally he called to confirm what I’d known early on. Appendicitis. N was having surgery that night. Crap.
And so I left, despite the grumblings of my colleagues that followed me out the door. I left to care for my youngest, to hold her hand through the hospital door. To hug my son, and realize how incredibly sick and alone he felt. Tears coursed down my cheeks as I soaked in the disarray of my clan. We had grown so far apart, so bereft of each other. I tried over the next five days to make amends, to care for all that I’d ignored in my inattention. Then the second scare hit – not only had Brother Bear removed himself from participation in life, enduring soul crushing pain of migraines in isolation, he’d become so ill that his platelet and white blood cell count suggested possible leukemia. WTF?! And so I took another day, another two, and waited while holding him, so far outgrown from my lap.
I believe the closeness, the bonding, the outpouring of hurt and sharing of things too long left unsaid brought healing. His labs reversed, he regained some energy, but still the effects of the traumatic brain injury held sway over his life, and I recognized how badly he needed us to help and support. We somehow muddled through the two short weeks separating us from winter break. We found a counselor, stepped onto the path toward healing, unaware of the long journey ahead.
While we reconnected, rejuvenated, and healed in togetherness, problems at work festered. I returned from break, and once again faced a summons to the office. My job, as I’d feared, sat in jeopardy. No more missed days allowed outside of death or hospitalization. Inwardly I wondered at the lack of compassion, and railed at the injustice. Outwardly, I meekly agreed and complied, tail tucked in submission. I’m convinced, as I look back, that I returned home that night a broken person. And in true zombie fashion, I missed every warning signal that announced impending danger.
A stopped attending school, made a second real attempt at ending it all. He shut down, and I simply let him disintegrate while dashing around like a Mad Hatter trying to pick up the pieces of my career in place of the home I knew not how to fix. N drank like a fish, literally melted before my eyes, and we didn’t see it – not me, not her dad, no one took notice, and 20 pounds vanished silently before our eyes, in the span of weeks. Neither child had willingly spent the night at their Dad’s since winter break. We muddled through celebrations of their birthdays, and I turned my focus and attention to report cards, insisting they finally spend one freaking night with the other parent. Even though N complained of feeling sick, and stated that something was just wrong.
By 11 that fateful Friday night, her tear choked pleas pulled me back to reality, forcing me to key into the message writhing underneath. She came home, I held her until she fell asleep in my lap, and then I kept working. In the middle of the night, she unleashed a torrent of vomit unparalleled by any seen in the entirety of my nursing career. I cleaned her up, scrubbed the bathroom, rocked her back to a fretful sleep, and again went back to work. Again!! By mid Saturday, I anxiously told her sister that N’s breathing reminded me of patients in metabolic acidosis. Still, she was drinking, peeing, occasionally waking up, and talking. Everyone has asked at one time or another if I am not guilty of incessant, unnecessary worrying, so once again I convinced myself it was okay and went back to work. Sunday morning she actually seemed better. Got up, ate, drank some more, still voiding, watched tv, etc.; but by night that horrid breathing returned, and I – end of trimester grading sheets piled all around, grew more fearful. I called her dad, shared my fears, and asked him to come over the next morning. We had a plan. He would take her to the doctor’s; I would go to work and fend for my life. I honestly believed this the best course of action. Or so I told myself. It's amazing the depth of self deception that paralyzing fear can drive us to.
9:30 am Monday, February 28th my classroom phone rang during a grade level meeting, and I somehow knew to rush out and answer it. Her dad, frantic, rambling about her eye’s rolling back, N incapable of standing up. I yelled for him to call the EMTs. They came and thought it merely the flu. The lead even came on the phone to talk to me, insisting she was dehydrated. “You don’t understand,” I yelled, “she’s been drinking and peeing like crazy!!” He reiterated, it's probably just the flu. I doubted it, and the only flew I could think of was the manner in which I left work. Principal nowhere in sight, 3rd grade teacher angrily demanding my time, J.G. once again looking irritated, and a new mantra coursing through my veins, “I simply don’t give a shit anymore. I am Out.”
I walked into Good Sam’s ER, found her room, and a nurse I’d shared shifts with before said simply, “Oh, hi! You know she’s in DKA, right?” No, I didn't, but I should have. What. The. Hell?!? I still feel that deep sense of utter despair envelope and crush my heart at the mere memory of hearing that line. I said the damn words – metabolic acidosis. I am, or was, a flipping nurse. I ALLOWED this - DKA- to happen. The doc struggled with the decision on whether or not to transfer her to their adult ICU or down to Children’s. After they hung the 3rb bag of IV fluids, pushed oral fluids, oral potassium and failed to notice her lagging level of consciousness, I demanded they send us to Children’s. It took another hour for air transport to arrive – the flight for life jumpers completely freaked me out at first, but it turned out we were going by bus. Only if things went south, would we travel the rest by chopper. God, it was worse than I thought.
Just how much worse, I realized when we arrived at Children’s. I knew what the picture that greeted us meant. This was a trauma response team, emergency code, all hands on deck response. It is Not the kind you feel relieved to see greeting your child, not when you have medical experience and understand at a gut level the magnitude of Critical necessary to set that domino chain into action. The endocrinologist confirmed these inner thoughts. “Your daughter’s blood sugar levels aren’t that high, but her acidosis is significantly high that we are very concerned. The next 12 hours are critical, and you need to prepare for the fact that she might not wake up.”
I have to face it, and I have such a hard time doing so. I failed to respond to my son’s cries for help, to get him the support and rehabilitation he needed. And then this – I had the background necessary to recognize what was going on with N. I said the damn words and let my adult daughter talk me out of going to the hospital. She wasn’t there, didn’t know and couldn't see the extent of illness' toll on her sister's body, but I did! I failed to act, and nearly lost N as a result.
The rest of it all is still so fresh, vivid, stark in my memory. Sitting at her bedside, entering grades on my school laptop – still intent on complying with a job I knew was already dead. I held my breath waiting for her to wake up. I think I’ve been holding my breath ever since. It beats through my chest demanding to escape, but I lock it down tight and chant over and over. Just make it through the night. Just make it through the arrogant nurse who proclaimed he knew better than the docs, rushing to bring her blood glucose down, ketone levels be damned.
Just make it through discharge. Just make it through education at the center. Just make it through the ex calling the police for a well check our first night home from ICU. Just make it through the next day, and the next, until finally my termination is official and I no longer have an income. Just make it through the next app, the next interview until it’s clear my former principal refuses to see me teaching again. Just make it through the first week, the first month, the first semester of middle school where it seems the challenges they each face might never end. Fluctuating blood sugars, migraines, joint pain, puncture wounds, under educated health aides, teachers' failure to accommodate. I’m barely working, yet always busy, and the house remains in disarray.
14 months from the beginning of this post, one month shy of N’s first diaversarry, I’m still holding that breath in tight, so scared it’s not done falling all apart. I’m scared – of the future, of the loss, of where to go from here. I utterly failed my children, and I don’t know how to forgive myself. Somehow, I’ve got to let go, move on, up and out from this year of torment and hell. I want to grow, lift up, taking my children with me far, far away from this space in time, until looking back brings but the faintest memory of the shit we’ve left behind. I want to find the moment when my son no longer resents me for all that I wasn’t and still haven’t become.
I’m reaching out towards … I don’t have a clue, but it’s certainly somewhere and some when better than this. They deserve that much at the very freaking least. And I think, having released a fraction of that pent up, fear choked breath, that I sense a glimmer of hope ahead.