Tag: faith

Tricky Times

katherineannecharltonLeave a comment

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

Bombarded but Thankful

katherineannecharlton3 Comments

Running on the narrow seawall I see the rain in the distance moving across the water. I choose to keep running, right toward it. As sure as rain, I ran right into it. I kept running. It is the time of year that I find myself running as fast as I can to chase away the memories, thoughts, and images that BOMBARD me moment by moment…when I say, BOMBARD, I mean BOMBARD-machine gun firing bullets-bombard. The images of what my mind traps and keeps hold of impresses me. I must be a masochist of sort to admire this about my mind.  It’s ability to muster up the most horrific, grotesque, fierce images at trainhe most opportune times, to get the biggest bang for its buck, mystifies me. Yet, I do admire my mind. The steel trap that it is; the ability it has to conjure, and dismiss at will. Well, at my will. If left unchecked it would kill me for sure. It is as if these moments seek to consume a mother like myself, like some sort of alien skin-eating bacteria for which there is no antidote. Why? For real, why? Why chase me? Wasn’t it enough for me to watch my son fight, win, lose, fight again and die from disease? Wasn’t that enough?

Frankly, I rarely ask why. Honestly, I have never asked God why. I just “do the why”. It is why I choose to keep running. It is why I choose to admire the insanity of it all when my mind, my very own mind, sets out to defeat, or at the very least corrupt and sabotage my days. It is also why I choose to take “captive every thought” and sift through them like rubble…

The seawall is slippery now. I keep running. My eyes hurt when the rain pelts them. I am glad I chose to wear a shirt over my white tank top because no matter what I am not stopping. I stay sharp and focused fully aware I am running on a narrow seawall that is slick. I choose not to leap over the gap as I usually do when I come to an opening of a dock. I am not an complete idiot. I have slipped and missed this leap before when it wasn’t raining; fell hard on my knee and as it bled, I got up and kept running. Today, in the rain, I stayed focused and found myself thankful for this season of BOMBARDMENT. Listen, I can’t toss out the horror and only recall the goodness can I? Is the horror not part of his life too? I think Robert would love that I remember it all. He hated being sick; but man he was a champion in it. He rarely acted sick, he pushed through “shit” I am not sure I could. This kid never quit. And I, his mom, remember it all. I hope I never forget one moment of it. I think he loves that I run in the rain and still watch my step. Like I said, I am not an idiot, just a little foolish at times. I am glad it wasn’t lightning because I would not have stopped today. I had work to do. “Do the work!” The memories are here, remember, but keep fighting, don’t let them win this time—it’s been 14 years woman, give up would you? Forget them all, let them go—stop remembering, MOVE ON! Get a Life—stop the madness…NOPE. It’s gonna rain. There will be lightning and the wind will blow me off course and life will want me to quit, “shit”, my own mind has challenged me to quit. Come on, my own mind betraying me, how can that be? Keep running. I chose this path, can’t quit now. Yes, I know it is narrow. I know it isn’t easy and I know I am “alone”. Yeah, yeah I am fully aware that there is no one at home right now. I am fully aware there is no one waiting to greet me, hand me a towel, ask me how I am or give me a hot cup of coffee. I am also fully aware that I am sitting here typing this right outside the very room where he died…his spirit left so much of him here…that room is a few feet away, my mind gently reminds me…And I am sitting here, like I have countless times, “running in the rain.” I am sitting here, like I have countless times, not asking “why” just trying to “do the why”.

Today my shield against the bombardment was my choice to be thankful. I am thankful. I am thankful that I am sitting right outside of the very room my son died in. Thankful that he was able to die at home, in his own bed, surrounded by love, with his head resting on my shoulder. There’s a lot in that moment to be thankful for. Thankful is how I choose to be. The contrast of the moment I choose to be thankful is just as real as the beauty of it, believe me. It comes at a price, a high price. It costs me morsels of my heart every time I indulge in those moments. Behind the thankfulness is the horror my mind faithfully reminds me. Today I recalled when a friend said, “At least you got to say goodbye…” Ah, such a sweet sentiment don’t you think? At least I got to say goodbye to my dying son as cancer consumed his body, stopped his heart and took his last breath. Here is the thing, she is right. I agree with her. It dawned on me as I “do the why” of it all, 14 years later, as far as the lottery in “Death of a child” goes, I won. Its like those movies where a child from the family is randomly selected to go to battle; or when the sorting hat in Harry Potter selected your “house”.  In this lottery, this was the best case scenario. Ok, so maybe that is a little twisted way of looking at it, but for me, I respect that it is true. Isn’t that all we want at the end of our life: to die at home, in our own bed, surrounded by love, at peace? You know it is. So for me, as the horrific images of the final days of my son’s life chased me down the narrow, slippery seawall in the rain today, I chose to fight back and “do the why” by being thankful.

Not long after my son died, a dear sweet friend’s son died. He was brutally murdered. I still vividly remember her face as she looked at me saying how I understood what it was like to have a child die. She knew my son and loved him. I still see her face as she said, “It really doesn’t matter how they die does it, in the end, they are dead.” She. Was. Fierce. She couldn’t bear, or dare ask why, she chose to “do the why”. She too runs in the rain…

I am thankful my son died at home, in his own bed, surrounded by love, with his head resting on my shoulder. There. Take that! Oh mind of mine that wants to send me over the narrow edge of the seawall, take that!

I am blessed to have images attached to his death, just like I have images attached to his life. I don’t have to wonder how or what caused it; what his last moments were like; if he suffered, what his last words were. We didn’t say goodbye to him that day, we just helped him find his way. It may be twisted, but I am thankful for the way my son died.

I didn’t slip off the seawall today.                                                                                                              It was cold in the wind.                                                                                                                                  I was dripping wet when I got home.                                                                                                       And here I sit.                                                                                                                                             Warm, safe, content to ponder the insanity and beauty of my mind.

And here I sit, thankful for it all. Peace, Katherine

Why Did You Start?

katherineannecharlton1 Comment

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I don’t know how long I will be able to run, but I know why I started running in the first place. Trying to regain my strength and endurance again after being injured for several months, I was reminded why I started in the first place. It wasn’t because I wanted to watch the sunrise, but that is a nice bonus. It was because I could not run. It was because one night when I needed to run as fast as I could to get to my dying son, I could not run. Yes, I know the phenomenon of needing to hurry and feeling like you are stuck in quicksand, or your legs feel like they are not moving at all-sort of spinning in one place like a cartoon character, but this was different.

We were in church. We were standing next to our friends who’s son was also dying. We were singing, and I was clutching my phone. We had left our son in the PICU under the watchful eye of his grandmother. She called me. I scooted out of the room to be able to hear her-she was hysterical. Our son had a seizure and she was panicked; and his room was in full chaotic life saving mode. When your child is inpatient in the isolation room of the PICU and this happens, you run as fast as you can to get there. And that is what we did. Or tried to do. I. Could. Not. Run. I remember thinking, “ah hell no-no one out runs the mama when her child is sick! MOVE FASTER.” I. Could. Not. Run.

The child in PICU was an athlete. He loved to run. We used to talk about when he was better how we would get back into shape together. At that point, we were content doing laps in the hospital hallways. Now, here we were, he could not run, and I could not run.

He died. I began running. I kept my word and got into shape. Now, mind you, I do not consider myself a runner. A couple miles several times a week is my idea of running. I wish I could run. Believe me, there have been days I wanted to put on my sneakers and run all over the place like Forrest Gump, and never come back. For me, being able to run became my little slice of heaven where I talk to God and let the stress of life leave my body. So when an injury robbed me of this freedom last spring, I had to simply give in and let it go. Just like my son had to let go of his freedom to run.

So, here I am, trying to run again. I remember why I began running, and I ran with this thought the other morning as I chased a sunrise. I indulged my mind and heart in the memory of that horrific night days before my son died. My legs felt just as heavy as they did that night racing to get to my son. I realized, 14 years later, I have not forgotten why I began to run. But that morning, I realized it is important to know why I started, but its more important that I did not stop, and I keep going . It is one thing to start on a journey, it is another to stay the course of it.

I laughed out loud as I chugged along thinking of my oldest son and my youngest son. Laughed because I started to run because of the oldest one, and now my youngest son runs with me. Fourteen years later both sons make me laugh. I started running because of one, and now, the other has given me reason to run for a different reason. Zombies. Apparently they chase you.  One son is a “ghost” who runs with me; the other son runs with me to keep me strong to outrun the “ghost”.

It is important to know why you start something, but its more important to know why you keep doing it.

Peace.

 

 

4th of July, Independence Day

katherineannecharltonLeave a comment

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