Tricky Times

This is a tricky time of year for me. They say “the body keeps the score“, mine certainly does. Thankfully my body doesn’t seem to manifest the score it keeps in physical ways. My score keeping comes in the form of waves of emotions and flashback memories of images. I am grateful for not craving substances to dull it and for not suffering in the pain of panic or the dark fog of depression.  When I think back, “these days” during Oct. & Nov. remind me how every day I had to choose – choose Fear or Love. Facing the most difficult days, worst decisions, and most horrific realities, I had to choose Fear or Love. I chose Love! What mom wouldn’t choose love? The Mom in me knew Fear was not an option. Fear was ever present, believe me. It crept around in the dark crevices ready to pounce the moment I slowed up a bit to catch my breath. Fear is the worst kind of terrorist, it really is infectious. I stand on this side of “those days” and shiver when I recall the decisions I had to make all the while knowing the probable, most definitive outcome. As a Mom I did my best to be normal-feed the family, get everyone to school, do laundry, run the household as if we would just keep growing and healing like we were supposed to. We did not sit around and talk about our fears, not with each other, not with Robert-we kept choosing Love. I call it choosing Love because to me Love is Life. Even now, I rarely share the true details of those days, I have shared them publicly for the sole purpose of bringing light to a world that most never have a glimpse into. I do not share to garner sympathy or to frighten anyone, simply to awaken minds and hearts to a reality that many of my dearest friends have faced. It was utterly bizarre, unrealistic, unimaginable and insane to live these days knowing Robert would die. We made decisions no one should ever have to make: no more lab work meant mercy to us-we could not bear to watch numbers that told us what we imagined going on in his body as it was consumed by disease; pain patches or morphine; diapers or not; Tylenol-antibiotics; platelets or bruising; die at home or in a hospital…Fear? or Love? Fierce. The only other person in the world who “saw” what I did was my husband, Robert’s dad, and sadly we could not bear to speak to one another. There was a sort of glue in our silence, our silence seemed to be fuel denying the inevitable. I suppose in our way we believed if we did not speak it is simply would not happen. I respected our silence, still do.

This is an excerpt from the journal I kept online:                                                                           Friday, October 11, 2002 at 08:05 AM (CDT)
***UPDATE: It is 1pm; Robert’s lungs are not improved, they look to be about twice as full as yesterday. At 4pm they will take him down for his intrathecal procedure; administer methotrexate into the spinal fluid, check the spinal fluid for signs of disease; flush his port line,and give him a shot in the leg of Lasparinginase-a very commonly used effective drug. They are also going to stick a very small tube down into his lungs to get a sample for testing. They feel the risk involved in putting him under is much less than the risk of not knowing what is in his lungs…it could be: pcp(pnuemonia), fungus, or leukemia. Please pray for Robert, this procedure may cause him to be on a breathing tube for a time. ***
Robert is doing fair. He had to be moved into the Pediatric Intensive Care Unit for monitoring. Yesterday’s x ray showed some type of fluid in both lungs. They are “speculating” that it is blood due to his low platelets and the fact that he is spitting it up. It is not the usual old blood that he was vomitting up in the past…so, they are monitoring him closely, giving him lots of platelets, red blood and such. Of course this creates another very precarious problem in regards to the amount of fluid going in to the the body. Too much fluid too fast can be very bad for the lungs and create all sorts of other problems. Robert is mainly frustrated and very tired. To say that he “hates” the PICU is putting it lightly. It must be very hard for him to cope on such little sleep and the constant in and out of the place up there…I guess they are used to babies who sleep through everything, because they simply have no regard for privacy or rest. We have had to put a sign on his door about his lack of an immune system, we are constantly having to remind them to wash hands, wear gloves, use alcohol wipes on his lines…etc.! Makes for no rest at all for any of us.
I came home last night to try to rest. I was so physically tired from the driving and such…I actually feel worse today…but, I have felt this fatigue before, and many of you parents out there know exactly the fatigue I speak of…Tylenol works wonders! Jeff is doing well. He seems to be holding up I am sure needs rest.
We are hoping that Robert’s lungs look better and are clearing up with the x ray this morning. They believe that giving him the platelets should stop the bleeding in the lungs. Sort of like when he had the bleeding from the bladder in the past. Dr. Gowda is planning on doing an intrathecal procedure this afternoon to administer chemo directly into the spinal fluid. Robert’s wbc was at 18.0(very high!) on Tuesday, and they already have managed to get it down to 4.5 as of yesterday…who would have thought we would be praying for wbc to go down!
I must go, and thank you for checking in…I will be back later with more news of the situation…God bless you and thank you for being there…being on the computer and for the many people who are giving us the human touch we need to have right now…Peace to you all, Kathy and Jeff
Remember those “friends” who lowered the man through the roof and Jesus told the man “the faith of your friends has healed you…” in case you did not know, you are those “friends”…this page has become a sort of lifeline connecting all of us together…you all are so faithful to follow along and cry with us and pray and plead with us, the very least I can do is write to you everyday…I will be back later with more info. Kathy (pray this page updates!)

Damn those were horrible days.

I HATED that day. I hated when they decided to perform a bronchoscopy to check his lungs. I was elated when the elite trauma surgeon in our region came in specifically to do this procedure on Robert because he had heard his story and insisted on doing this procedure himself. I HATED when the Dr. pulled me aside to talk to me. He was in his scrubs, mask down around his neck, “I need to know what you want me to do if Robert’s heart stops during this procedure? He is very sick and we do not know what will happen when he put him under. I need to know if you want me to bring him back because I can. I have brought back many people when they die on my table and I am not proud of it. I can do it, but need to know what you want me to do. Also, his vocal chords will be damaged and he may not heal and not be able to speak again…” I recall standing next to this surgeon hearing his humility as he shared the power he knows he holds in his hands. He continued, “I am convinced when someone dies on my table and they get a glimpse of heaven they don’t want to come back, and I bring them back, all the time-I am not proud of this, and I do it all the time.” WOW. The reason I HATED this moment was, well, obviously, who wants to have to make this decision to keep their son alive! In the end, the WORSE part was Robert’s throat was torn up and he all but lost his voice. From this point on Robert could hardly speak. He would get so frustrated when he tried to talk, words hurt and he had no voice; between the pain, and the oxygen it was torture. I would skoot in close so he could whisper in my ear and I could feel his breath…ah the precious breath of my son on my ear…he and I became even more masterful at the unspoken language of his “look.” I knew who was welcome in his room, and who I needed to ask to leave. I became his voice by reading his nods and eyes. Robert’s mind was sharp until the day it stopped working November 17th. His last words he clearly spoke were, “Mom, Mom…” Who has time for Fear in days like this? Fear knew it was only a matter of time before it had its opportunity to overtake me…Fear is very patient. Fear loves to drag dog days of time out to torture us. Love is more patient. I chose it every moment in these times.

Damn those were horrible days.

Here I am, all these years later, every single day making the same choice- choosing between Fear and Love. Only now the choice between living in Fear or living in Love doesn’t have a child’s life hanging in the balance. The life hanging in the balance is my own. Live in Fear or live in Love?  Seems kind of selfish to decide what to choose for yourself doesn’t it? A few years back I realized how I walked around in Fear. The world had no idea. Today, I realize here I am again-Fear or Love…The tricks and treats of this life are very scary, the memories of days gone by can freak us all out. I can no longer choose Fear. It took some digging to realize I was choosing to live in Fear. Seems we become brilliant at hiding from the world and ourselves. My brilliance was being dulled in many tangible ways-migraines, vertigo, bones feeling like they were decaying, no appetite…it took everything I had to find a way out of my comfortable place of living in Fear. I told you Fear was patient, it waited a long time to overtake me, and it was winning. Fear had overtaken all the tenacity I had as a child, my determination as a teen, and now my Mom Magic was fading fast. Fear was winning. I had no idea what “happy” meant, no idea what “joy” was and my body lived in this strange place marking a calendar by the days of Robert’s death in a private torture chamber…

Gratefully the roots of Love planted generations ago fought to bring me back to life. Robert’s surgeon can bring people back to life, well it seems, so can the “unseen” stored deep within. It too can bring us back to life if we let it. I was being resuscitated, revived. I decided, “I cannot live in that place any longer.”

Oh, I would be happy to share how I found a way to overcome Fear, it was life or death time for sure. Today I choose Love again. Whatever that means…For me choosing Love means: smiling a lot, laughing out loud, hugging tight; fighting to ignore the old crappy self defeating thoughts that pop into my head; some days the Love I choose is to kindly greet each of the children that come into my classroom daily, some days that is all I have. All days I let it be enough.

15 years ago I faced making a decision to try to extend my dying son’s life…it was Love that chose to keep fighting a losing battle. Today I am faced with making a decision to Love and not Fear, I hope I always choose Love. 1393003_10151886681268711_930283670_n

Is it quitting if I resigned?

I remember the first time I heard, “Those who can’t, teach.” I also remember thinking, “Did he just say that? Is he serious, do people have the audacity to think such a dumb thing? What does THAT even mean? Those who CAN’T, teach…” I am pretty sure I get the meaning, the intent of this idiotic “saying.” So, no need to clarify or expound upon it for me, please, spare me. I heard this many years ago. In fact, it was a few years after I had begun my teaching career. Today, I find myself thinking of this statement again as I leave my teaching career. We are well aware of the mass exodus and problems going on in education. I am not going to regurgitate them here. I say regurgitate because after a while all the negative speak makes most of us want to vomit, or feel as if we just did. I cannot bring myself to do it. My issues and opinions are mine and my reasons for changing careers are mine as well. It is not about being disgruntled, underpaid, overworked, unappreciated or any of the other myriad of negative aspects that come into play as a teacher in today’s world, in this country. Who doesn’t feel that way at some point in life about their job? I find myself focusing on how difficult it is for me to leave this industry. How it pains me to leave my co-workers, administrators, parents, and mostly my students. Like most teachers, our school becomes our home away from home, our co-workers are an extension of our family.

In my exodus, I find myself surveying the battlefield I am walking away from. Yes, it is a battlefield. It is a battle adjusting to all the new things we are asked to implement daily, weekly, and annually. Like war, it has so many unpredictable variables and the powers that be keep trying to develop new strategies to attack the issues faced by students and our educational system. The teachers are the soldiers. The ones who are on the front lines taking orders, trying to win countless insurmountable battles daily in their classrooms. Teachers show up ready to wage and win the war of illiteracy, hunger, homelessness, abuse, and fear. They show, go above and beyond and they do it as professionals with compassion.

I will never forget what I learned in my 11 years being a Teacher. I will never forget what I saw and experienced either. In college I considered mission work, truly wanted to become a Psychologist and never considered teaching. As a teacher I became both. There is no need to look any further than your local public school for a place to serve the least of these and encourage those who do it all day, sometimes into the night. Talk to any teacher, I bet they will tell you the same thing if you ask them, “Why do you do your job?” They will probably say they do their job because when you see a child “get it” or know the change you helped bring to life in a child and know that no matter what even if no one ever knows, notices or thanks you, you have impacted the future…

I love my school. They know I do. I was a Mom there for years before I ever became employed there. My school was there for my family in its darkest hour; they stood ready and willing to extend their arms of love and held us up when my son was sick and died. It was beyond remarkable. In my 11 years there I watched them do the same for other families. Meadow Park Elementary may have been the only school I worked at, but I doubt it is the only school that works like a well-oiled machine like they do. I want to take a moment to thank my school for being there for me in many ways; thank my co-workers for all the years together. I can only hope that whomever steps into my classroom this year after I have left, will cherish it as much as I did. May the years ahead for the teachers, staff, and administration at Meadow Park be blessed in ways that blow their minds! May they have strength to carry on and go above and beyond like they always have.

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A door opened in front of me, I am choosing to walk through it into a new career excited to see what the future holds. The only way for me to walk through that door is to close another one. Today I resigned from my job at Meadow Park Elementary School.

I resigned, but am resolved, not to forget the beautiful fierce reality that exists in our schools.

Peace,  Ms. Charlton

 

 

 

 

 

 

4th of July, Independence Day

July 4th, Independence Day.

14 years ago a boy watched for fireworks out the narrow window of his hospital room. He had asked for special permission to step outside of the hospital which had held him captive for the weeks prior to this day of celebration. He just wanted to sit outside, hear the sounds, and see the lights in the sky. They said, “No.” But, at least he tried. He always tried. He learned early on in his life to ask for whatever he wanted, even if he knew the answer would be “No.” I am still learning how to do this.

So, on the 4th of July, he tried again. Being told “No” didn’t stop him. I watched as he tried again. Head cocked sideways, on his tip-toes, he tried peering out the narrow window, looking between the hospital and a giant research building that blocked his view of the world outside. He tried to see fireworks. I watched as he shifted his weight, stretching his neck and finally, giving up. Shrugging his shoulders, he put his head down, I could see he was sad. He just wanted a glimpse. He just wanted his freedom. He wanted his independence, too.

He was attached to an i.v. pole; 4 lines attached his body to this pole that controlled his existence. Three of those lines ran straight into his heart. His heart that wanted to be free and independent, was being held hostage by these lines. He, is my son Robert, and my mind’s eye still sees him on that night 14 years ago.

He was fighting hard for his freedom and independence. Forgoing fireworks seemed a small price to pay for his life. He knew that, but he still tried, I love that about him.

Robert was smart. But, he was more than just smart, he understood the words that he overheard in all the meetings he sat in on with his parents and doctors discussing his disease. Robert knew if he ever wanted to live, to be free, to be independent, he had to be attached to this pole, and survive this horrible ordeal. At 11 years old, this boy understood that this was his last chance, his final hope, it was truly a matter of life and death, his.

Yet, the gravity of his condition did not keep him from wanting to see fireworks that night. He surely never imagined that would be his last chance to watch them light up the night sky in his lifetime. It was his last 4th of July. I should have lit up fireworks every single day he was alive. He deserved that.

But, you see, when you are in the fight for your life, you believe in the unseen. You believe what you are doing to save your life will work. You do the work, and you have faith.

Little did we know, the very next day was “do or die” time. The next morning they woke us up before the crack of dawn informing us the marrow was being delivered and would be ready to be infused into Robert in the next hour. We did not know it would happen this fast, or without notice. There were no labor pains to warn the arrival of my son’s new life. What we did know was, it was his last hope. His body had been stripped down to nothing but cells dying off from radiation, chemotherapy, and countless other concoctions administered for this purpose, to seek and destroy everything that was old in order to receive new life.

It was surreal to stand by my son’s hospital bed as the doctor walked in his room holding a bag of marrow that could save him; that bag was my son’s only hope for living. And my son knew it. He wanted to see the bag. He studied it, I think he wanted to kiss it like it was the best fish he ever caught. He could not touch it, but he studied it. He asked them to turn it around so he could see all sides of it. He nodded his head, acknowledging it, bowing to its power, knowing he had to be ready to receive it-that was his job.

He laid back as he watched and listened. He was quiet. He was intentional. Robert was fully aware of every beep, every sound, and every breath being breathed in that room. He quietly stared at that bag and needle as they injected it into the line attached to his heart. I am sure he hoped for some sort of magical surge of “The Force” to bring him to life, yet, he remained quiet. He turned on his side when the doctor told him to. He listened as they watched him closely. I was glad he was on his side and could not see the panic and sense of urgency on the nurse’s face as she watched for signs of destruction; his blood pressure shot up, other expected things happened, he turned red and his skin became very hot. Robert did not move. He stayed focused and calm. No doubt he was doing his job, receiving his new life giving marrow.

The unseen hope became our only hope. Talk about faith. Imagine knowing you are at your last hope. KNOWING–you are at your last hope…

Fourteen years later I remember knowing this reality. I stood by watching as someone was at the end of their rope, their final and only hope, their last hope, their only chance at life, if this didn’t work then it was over…I stood and watched; I waited and  believed. As Robert’s mother my job was to believe. Oh, don’t think for one moment I did not have a million other responsibilities to help my son win his freedom and independence, but I chose to take it to the ends of the unseen realm called faith and believe. I believed that every single cancer cell was killed off, even the ones they warned us would hide in his big toe or testicles and try to kill him. I believed in the unseen battle that raged in his body. So did Robert.

The fight for freedom and independence is rarely won by simply fighting with what we can see. We know it is won in the dark shadows deep inside of our minds, hearts, souls and spirits. We do battle every day against things that threaten our livelihood. Insecurity, hopelessness, self-defeat, lies we were told, hurt, fear, harm done to us, lack, and my goodness whatever else we conjure up. Not only did my son have to kill off his own body to live, he had to combat all the unseen feelings of depression, lack, hopelessness, fear…Robert personified faith. That kid did everything he had to do in the physical world necessary to live; and he did everything he had to in the unseen world necessary to live. He did the work, he had the faith.

On the 4th of July, Robert asked the powers that be to let him go outside to watch the fireworks. When they said, “No.”, he didn’t give up. Instead, he dragged his weak, hurting body and i.v. pole and tried to peer out the narrow window in his hospital room for a glimpse of the life he was missing.

He never gave up.

Robert, thank you for never giving up and having faith…10400446_102926083710_255878_n