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

Bombarded but Thankful

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