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.

20 January 2012

Oatmeal & Spike

My daughter just loves to invite Oatmeal for breakfast, but whenever she does Spike insists he come along. Spike is the kind who doesn't wait for an invitation, and definitely over stays his welcome regardless of how many clues we give that we're really quite done with his visit. Invite Oatmeal for breakfast, and Spike generally hangs around through mid morning, which is also N's school lunch time.

Today took the cake though. There's simply overstaying one's welcome, and then there's the truly obnoxious. I guess Spike decided it was his turn to play the part of exceedingly obnoxious as he hung around through lunch, on into Science, and straight through to basket ball practice. Spike's not exactly quiet about his presence. He pretty much shouts I'm Here! with abundant irritation, elicits short tempers, and many snide remarks. I guess it's just attention seeking, but he caused N a lot of upset, triggered a crazy bad headache, and even tied her stomach up in knots.

I'm just glad he's gone and won't be there when I pick her up from practice, especially after our last conversation. N, nearly in tears, begged to understand why Spike wouldn't just Go Away. We brainstormed through some ideas to evict her unwanted guest, and I'm thinking he must have been eavesdropping 'cuz half way through practice he just up and left, without even saying goodbye. Oh, maybe that's for the best.

I do have to tell her we can't invite Pizza for dinner like we planned. I know Brother Bear has a game tonight, but if we invite Pizza, Spike's gonna want to come back. And if Spike show's up for dinner, he'll likely end up spending the night!!

19 January 2012

All Health Insurance Companies Need to Approve CGM's

     My type 1 diabetic child meets the criteria for coverage of a continuous blood glucose monitoring system, otherwise known as CGM. She experiences nocturnal hypoglycemia, or low blood sugar during sleep, several times a week. These do not wake her, contrary to the endocrinologist's reassurances to they definitely would. The only means of catching them is for me to get up every 3 hours and test her blood sugar. Part of the time, Miss N can sleep through those tests, but when she's low she has to wake up, drink and eat something, then wait ten / fifteen minutes to ensure her blood glucose level came up enough. 
     This isn't good for any of us, and her lowest lows tend to occur over night. If I don't get up, and sometimes I'm so short on sleep I wouldn't wake to a sonic boom, she could go low enough that she suffers seizures, or God forbid, death from severe hypoglycemia. So far, so good. I wake up most nights, and the nights I've managed to sleep through the cacophony that likely irritates my neighbors to the point of wishing we'd move (or worse), some profound 6th sense has woken me in time to catch a 40 on its way down. (Note, blood glucose truly should remain above 70!!) 
     As a result of this night time struggle, N now finds herself dealing with hypoglycemic unawareness - her body's inability to feel a low blood sugar,  fasting BG greater than 150, usually from treating night time lows,  but bad all the same. Nearly nightly, we see a drop of more than 100pt in blood glucose, so she has to go to bed in an unhealthy range if we want to avoid night time lows. For her overall and long term health, that is not a viable option. These all represent aspects of diabetes that pose serious risk to her health, from damage to blood vessels  and organs, to damage to her neurological system, etc. Untreated hypoglycemia ends in seizure or death, ergo the fear of sleeping through alarms, and yet our insurance continues to refuse coverage of a CGM. 
     In an effort to achieve better control, we're switching to an insulin pump, a device that continuously injects small amounts of insulin into her system. Of course, this makes us both much more nervous about night time blood glucose levels. I find it odd that an insurance company will cover, at least in part, an insulin pump but not continuous glucose monitoring. In fact, the pump N chose has an integrated CGM system, so her blood glucose values show up on the insulin pump, and the pump takes these trends into consideration when suggesting the amount of insulin to inject. So, seriously, it's a no brainer - you cover both devices simultaneously to prevent severe hypoglycemic episodes that lead to more costly interventions, hospitalizations, and at its worse, loss of life. 
     Of course, a number of insurance companies simply don't see it this way, nor do the employers that provide insurance through insurance providers more likely to cover CGM. I've shared before how I lost my teaching contract, and it still irks me to no end that I was informed, point blank, I faced non-renewal as a result of my child's illness, and the time I missed from work during her ICU stay. I know, logically speaking, that those involved in decisions regarding budget cuts, and contract non-renewals, faced enormously difficult decisions. In the effort to cut millions from the district budget, and further tighten  the insurance benefits provided teachers, they targeted staff  contending with their own chronic illness, or with chronically ill family members. Again, I get it. We pose a cost that employers both want and need to rid themselves of. Sadly, in education, they have the means to do so legally if you're in your first three years of teaching. Frankly, access to health care in our country sucks, but that's for another post. This is about CGM, and insurance covering a necessary and life saving device.  
     The truth is that criteria regarding coverage of CGM exists at a national / federal level. My child, along with countless others, qualifies for coverage of CGM according to that criteria. The trick, however, is that in the context of the documents outlining that criteria, three tiny letters appear, allowing state medicaid programs and insurance agencies to decide for themselves whether or not they cover CGMS. LCD - local coverage determination. Three letters, combined, that confer the power and ability of insurance companies and state medicaid programs to ignore the research, ignore standards of care recognized for the treatment of diabetes, and result in denial of CGM for many. This is a very important issue for ALL diabetics receiving insulin. So, I'm asking. Please join, and ask others to join, this important cause!

18 January 2012

SOPA / PIPA and Why they Matter to You

I seriously considered not posting a thing today. Instead, I've decided (given limited readership  on this blog anyway), that I can better support the goal of the internet blackout with a short plea. Please, take a moment to understand just why so many of your favorite websites have gone black today. This isn't something that might happen sometime in the distant future. The House and Senate push for their respective bills, SOPA and PIPA, takes place right now, and while it's disguised as an attempt to prevent online piracy, the bill's more closely resemble the emperor's new clothes. Only, we're the fools if we believe these bills have our best interests at heart, they do not. Instead the person they seek to protect is the very same person consciously screwing both us and our economy as we speak - corporate personhood. 

Don't think this constitutes a real issue? Check out Wikipedia today, it's gone black. Your favorite web blogger? Likely black, though not all of them because word simply isn't spreading. Worse yet, should SOPA and PIPA succeed in passing, no words, unless they strike a pleasing note to those controlling the flow of information and ideas across the net, will spread. Not the ramblings of a simple blogger like myself, and certainly not the words of many who make a living from the internet. Oh, wait, I do that too. I charge a reasonable price for writing original content, something I rarely promote or discuss here, and I'm damn good at it according to my clients. They and I won't be able to continue with that symbiotic, win-win relationship should these bills succeed in their attempt. You likely won't enjoy access to your favorite sites, not unless they sell their service, you pay for it, and someone else benefits from that scheme. 

So, get out there and educate yourself. Learn all about SOPA and PIPA, how they directly affect you, and the existence of a free internet with open, free exchange of ideas. Check out American Censorship a site that provides a clear, concise explanation of these censorship bills disguised as piracy prevention (something we actually do need). 

Wait, you realize this is Bad News in its worst form. Then do something. Both Wikipedia and Stop American Censorship provide congressional look up links to help you in your efforts. Call, email, mail your representatives and senators. Personally, I don't care for the Orwellian future promised by these twin bills. I've called, emailed, mailed, and plan to do more. I want to literally melt the lines to their inbox and voice mail with traffic regarding this issue. Let's do our part to keep the internet as we know it. We do not deserve to join the likes of China, Iran or Syria in the loss of free speech and open access to information.

14 January 2012

Things Our Children Teach Us

After spending the day with my nearly 14 year old son (amazing how proximity to his birthday prompts me to admit he's not yet 14, though he seems far older), I went to bed amazed by his self awareness, depth of understanding, and perseverance. Again, hard to believe he's not yet 14.

Faced with enormous, high point projects, a basketball practice / game schedule that eats up all but one day a week, and the pressures of joining said team nearly half way into the season, it looked as though his nerves might get the best of him. It started first thing in the morning. A cloud of sheer overwhelming stress visibly hung over my son, pushing his shoulders and spirit down. Poor kid ended up coming down with a sore throat and headache, basically a cold to match his mood.

Despite mounds of work and pressing deadlines, we found ourselves presented with a rare opportunity to really connect. A opened up and shared avenues of thought surrounding spirituality and religion, concerns about school, and his fears about the basketball league he'd just joined. The team lost a few players to injuries, and Ahern found himself presented with an opportunity to try out for the team more than 2 months into the season. His first game with this group took place last night, and in the hours leading up to that, he shared the nearly paralyzing sense of fear he faced in taking this risk. What if the players don't accept him? What if the coach feels he made a mistake and selected the wrong player? What if he can't manage the practice / game schedule and his mounting homework load? What if he messes up and loses the game for his team? So much pressure building, constricting, until it surpasses any asthma attack he's experienced in the past.

I so enjoyed a chance to learn more about how he views the world, the incredibly deep and intelligent consideration he's given to organized religion, spirituality, and his own place in the universe. Still, as we continued to talk, my heart broke at the intensity of his struggle to find a place to fit in, to adjust and accommodate to all the demands placed on him, and the uncertainty that plagues his every move. I realized he needed the freedom to choose: to  quit, to commit, to make his life suit his dreams and desires rather than conform to anyone else's. In that moment, this freedom surrounded his decision to play with GC or not, and to feel good regardless of his decision. Sometimes we unwittingly add far too much pressure to our children's already full lives in our attempt to afford them opportunities and activities they've asked for. We forget, sometimes, to place the act of commitment in our kids' hands, and in our excitement, his dad and I'd done just that. Well, I forgot, I highly doubt his dad shares my support of our son's potential decision not to play, and I'd likely have to invite him to get over it.

As the afternoon wound down, he rested, finished homework, ate well, took a nap. When A enters the zone, there's no question where he's gone, or why. It's also best to just leave him there until he's ready to rejoin. A pleasant calm descended the house, we enjoyed a nice family dinner. Sister bear sensed the electric quality to the atmosphere, and the kids traded jokes and shared music and stories about their favorite artists. Over the next couple of hours, we managed to get ourselves ready with an absence of chaos and arguments, and left the house with minutes to spare.

I'm not a sporty person. I don't understand the rules of the games, unless we're talking swimming. Sure, I can follow plays and possess a basic sense of what's going on, but not much beyond that, nor have I felt the need to move beyond that basic understanding. Watching him play, I realized two things - has no idea the level of talent that he possesses, and I suddenly want to learn everything I can about basketball, game plays, and the difference between personal and technical fouls. Parents wondered allowed at the new player they'd yet meet, at the incredible plays he attempted, sometimes with success, other times nearly so.

I enjoyed a rare glimpse of my son as a whole person, and an even more rare invitation to witness the paralyzing fear he faces day in and day out. I sit here in awe of his tenacity, the courage he demonstrates by facing that fear head on and pushing through despite the imagined cost of failure. I hold a new found respect for the person my son continues to grow into, for his insight and willingness to take risks in order to grow. In the absence of outside intervention, or action on my desire to rush in and save him, he accepted his right to and responsibility of free will. Ultimately, he's decided to stick with basketball, and simultaneously put his full effort into school. I so admire his strength and perseverance, and feel emboldened to face my own demon's based and cultivated from fear.

It's amazing the things our children teach us, by example and otherwise.

10 January 2012

Pure Genius with a side of Brilliant Humor

Jesse Rosten shares an incredibly important message, wrapped in funtastic packaging guaranteed to create a few laugh lines. (The more the better in my book!) Fast on the heels of my delighted laughter, I realized just how much I want all of my kids to watch this, not just the girls. From my laptop to yours, I hope you enjoy the vid as much as we did!

Fotoshop by Adobé from Jesse Rosten on Vimeo.

In the Absence of Pressure, A Conscious Choice

In the slightly more than ten months since my youngest cub landed in Children's ICU in diabetic ketoacidosis, she's endured almost constant pressure to use a pump for insulin delivery. The pressure to make a choice, whether well intentioned, born of a lack of understanding, or out of true belief that one choice proves better than another, creates an insidious resistance to choose the suggested path. I cringe at the memory of school personnel insisting that she change soon, or would indeed change sooner or later, to an insulin pump. Quite frankly, metered dose insulin (MDI) works just as well, and for some type 1 diabetics, better than insulin pump therapy. Even I developed an aversion to switching to a pump in the face of such incredible pressure from those who barely understand what living with this disease entails for either myself as a parent of a child with diabetes, my daughter who was diagnosed last February, or the rest of the family.

We often joke about the struggle to maintain some semblance of balance between normal life and life with diabetes. Since the day of her diagnosis, my ever awe inspiring daughter insisted that she does not have a disease or an illness, she has diabetes and her life will not revolve around that condition. As we round the bend toward her first diaversary, I look back over these last ten months and marvel at the maturity and common sense exhibited by both of my 'at home' children in response to Diabetes. Without hesitation or reticence, N has embraced and taken responsibility for large amounts of her care and management, and led life as normally as possible, proving to all that life with diabetes need not be more than simply life - on the outside. Brother Cub routinely asks to join us on our quarterly visits to the endocrine center, learns all he can about counting carbs, administering insulin, and just what his sister acts like when low. He's displayed amazing sensitivity at times we need to step in and direct her towards a timely blood sugar check, and volunteered to give shots when even their eldest sis balks at the idea. (Her time will come.)

Underneath this sea of calm and inspired acceptance of this life altering illness lies the ugly underbelly of the disease. The sleepless nights filled with hypoglycemic events requiring vast quantities of nearly pure sugar needed to avoid the death of much needed neurons. The ever present fear that one or both of us just might sleep through these terrifying events. The brief moments of sheer, unadulterated misery over a high reading or the inability to eat something right now when the hunger pangs strike rather than in a few hours when it's once again safe to administer the dangerous but life saving medication, insulin. I believe I've amassed less sleep these past months than I did in the first ten months of her life, and the sleep deprived version of me pales in comparison (and compassion) to the well rested.

Slowly over the wintry season, devoid of swimming and after school athletics, her readings crept upward, insulin needs rose, and night time lows worsened. We've battled illness with Diabetes, a beast of an entirely different and unpleasant nature, injuries, and unwanted ketones. Despite embracing and reveling in healthy eating, not much different from our diet pre-diagnosis, but more consistent in appearance, the holidays brought cravings for the sweet celebrations of years passed. We chose wisely, making few of the favorites, and enjoyed them in moderation, but still the resulting blood sugar swings tested our collective patience.

More stress inducing than anything, the struggles with insurance push us well beyond our limit. Imagine the inability to receive a simple vial of test strips the days prior to Christmas. Without these she cannot test, and without testing, we cannot determine the correct amount of insulin to administer. Without insulin, she cannot eat... but from the state we received nary a response, until finally we paid out of pocket. 50 tiny strips designed to collect and analyze a teeny droplet of blood, twelve times a day. Just enough to last us 4 days, provided none came up faulty. Provided we needed no extra tests to rule out and treat a low or high. 4 days at the cost of $65, an infinitesimally small but necessary component of her care, and the insurance company could not be bothered to respond. Of course, those four days covered Christmas - a major holiday filled with anticipation, joy, and excitement. The sort of day designed to create wide fluctuations in blood sugar requiring more frequent testing. We made it through, just barely, thanks to the cancellation of a gift apiece for our children, and the ability to purchase much needed strips with said gift money. At another time of year, we might not have been so fortunate.

That event prompted the appearance of an enormous, dark weight in the pit of my stomach. One that grows heavier if I indulge the fear from which it derives life. A weight that moves ever higher, and threatens to choke me with thoughts I dare not mention out loud. What if I can't afford her care? What if we can't get the medications she needs? What if... and I shut it down lest it take over. I cannot, will not, allow those fears to take over, or for that eventuality to manifest. Clearly, the insurance industry fails to share my sentiments, feels no compunction to prevent such a horrific outcome.

In the face of continuing nocturnal hypoglycemia, lost sleep, and increasing numbers of shots, the pump word began to slowly circulate our household, and along with it CGM. (Continuous glucose monitor, a device that reads her blood sugar level every five minutes, and alarms when too high or too low.) Away from the pressure of friends and school administrators, those who previously pushed her toward an unmovable opposition to the pump, the idea took root. We barely whispered a word of these thoughts at first, kept them well hidden, those first few uncertain days, until finally we reached the morning of her next appointment.

The question arose as an aside. What about a pump? Does it really lead to more highs? So hesitantly, nearly non committal in the roundabout inquiry, but I knew what it meant. By day's end, she'd chosen which pump, and formed a plan to acquire it. N emailed the PA, asserted her choice as without hesitation and firm, provided well thought out reasons and arguments for not just pumping, but also a CGM. And the PA, strongly encouraging further thought and discussion, acquiesced in the face of such honest, heart felt, and well reasoned arguments. Within a day, I heard from the pump manufacturer. Hours later, the center called to schedule the pump prep class. Given the freedom and space to arrive at her own decision of what treatment options offer the best care for her at this moment, she made a decision to try pump therapy.

My nerves quiver at the learning curve ahead. I hold no doubt that we will manage, even master, this new approach to diabetes. That said, I understand that bumps and challenges lie ahead. The first, once again the insurance company and the seemingly endless block to what at first seemed like a fast moving transition in action. We wait, perched on top of the roller coaster ride, awaiting the swift, break necked pace down into, through, and up the curve of learning to pump and CGM simultaneously. Of course, the insurance company holds the lever to the brake in its hands, and in the interim I once again stack numerous sleepless nights against the promise of a more sleep filled future. It seems that N dare not breathe lest the winds of her bated breath change the tides of this important decision. In the absence of pressure, she made a conscious choice, and now, the insurance company holds the fate of its realization at bay.

Welcome to life with diabetes, where hurry up and wait takes on entirely new layers of meaning.

09 January 2012

And Back Again...

The post holiday season feels incredibly different for me this year. Normally, I wrap up the winter break with a few days of reflection on the first half of the school year, and identify two or three things I want to change in order to improve classroom community or my instruction in some way. Finding myself without a classroom this year, I applied this process to my own home and family life. I feel ecstatic by the sense of renewal I gained by doing so, and found myself reflecting on the importance of sharing and teaching this practice to both our own kids, and our students. The ideas swirling through the maze of neurons in my headed needed an outlet, culminating in the following article that I wrote for an educational blog. I enjoyed writing this so much, I wanted to share it here as well. Happy New Year to each and every one. May it be a year filled with growth, love, and multitudes of joy!

The first week back to school following winter break provides us a time for welcoming back, revisiting classroom expectations, helping our students reintegrate into the daily schedule, and gradually easing back into sustained cognitive effort. Next week provides an excellent opportunity to model our own ongoing reflective practice for students. Like many teachers, I keep a journal at my desk that I write in frequently, sometimes during the day when I recognize the need to adapt or change a lesson, or an unexpected teachable moment arises, and most days after school. Before returning to school following winter break, I take time to read through my journal and reflect on aspects of our classroom that work well, parts of the day or content areas that need fine tuning (or even a major overhaul), and one area I want to explore with my students in the remainder of our year together.

When we open ourselves up to sharing these reflections, even briefly, we model the value of reflection and goal setting for students, and can utilize this opportunity to engage in shared reflective activities. Students truly enjoy seeing how much of our own thinking we put on paper, especially when it relates to making their daily experience at school better. Doing so models lifelong learning, and highlights the importance of reflecting on both progress and process in learning.

One year, I showed my fifth grade students my reflection journal, how full it was, and the questions I ask myself over winter break as I look through these notes. I shared with the class my realization that, once winter arrived, our transition from lunch recess to math felt chaotic, resulting in math lessons that flowed poorly, more students off task, fewer positive behavior recognition slips, and less fun for all of us. I projected on the board our class quiz, test and homework scores for math in November and December, and asked table groups to discuss any changes they noticed. This opportunity for group reflection, with direct, small group teacher support, provided purposeful practice with reflection. Students noticed trends, and talked openly about how chaos and disorganization affected their ability to learn. Each group shared one thing they noticed, and agreed as a class that a poor beginning to a lesson led to lower scores, and more importantly, less understanding of the lesson objectives.

We worked together to brainstorm ideas on changes our class could make to create a more positive and supportive transition. Each table group chose two possible changes to discuss, identifying how it would lead to a better transition, and sharing their thoughts with the class. Lastly, the class chose three possible changes to try (with teacher input), and voted on the one to implement first. Ultimately, our class decided on two changes, we moved Read Aloud to right after lunch, and students agreed to use the bathroom before the end of recess. Once we settled on a plan of action, we set a date for a brief class meeting to reflect on the success of that change one week later.

During that meeting, students shared out that they found it easier to listen and think during math, that more students completed their work and were able to move on to math games during centers, and that they understood the material better. One brave student shared the difficulties students faced in using the bathroom during recess, and I learned that students were often not allowed to use the restroom during that time. Through open reflection, and a willingness to hear and acknowledge negative aspects of process (in this case bathroom privileges during recess),my  students experienced the power of reflection in creating more positive outcomes in their learning and in their environment. As an extension activity, our class completed a shared persuasive writing activity, asking the administration to make changes to bathroom privileges for upper grade students during lunch recess. By the end of January, our transition to math had transformed to a quick, quiet, and smooth beginning that accommodated the needs of each community member.

January commonly signals a time of reflection for adults the world over. By sharing our own reflective practice with our students, and providing them a time to contemplate and share their own thoughts about what parts of the day or content areas are working, those that aren’t, and what changes would create a more positive learning experience for them, we empower our students to become accountable for their learning process and progress. Throughout the remainder of the year, we can extend this to specific content areas, individualized goal setting, and celebrations of progress.