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

Iris. As I see it.

Staring at the blinking cursor I feel a little afraid. I decided to finally pour a glass of wine and call it a day. “And I’d give up forever to touch you, cuz I know that you feel me somehow, you’re the closest to heaven that I’ll ever be, and I don’t want to go home right now…” Somehow I do not think that song was written with any idea of how it might be attached to my memory. The memory of a day that no one else ever thinks of, unless of course I remind them. We all have them, the days we can remember exactly where we were when we heard “the news”. The news of something…Oct. 5th is that day for me. Sixteen years later my mind, soul, spirit, and heart feel the tug of it. Maybe this time around it kept coming back because I am “alone” just like that day. Only this time I am alone safe and sound at home. It is a strange sort of comfort to be alone with one’s thoughts sometimes isn’t it?

16 years later I decided to check my memory of this day so I went back. I reread my online journal of Robert’s transplant days. My memory was confirmed; I was right, the date, time and such had not blurred and become mixed up in the chaos of life. The late night check in to St. Jude due to fevers; sleeping in the parent room watching and listening through the glass while Robert tried to sleep. There was no sleeping in a hospital those days, trust me. I stayed in the parent room to hide. I wanted Robert to try to sleep, but more than that I did not want him to know I was panicking. He never wanted to go back into the transplant unit once he was discharged, and my mom-gut knew something was not adding up. I had studied his numbers and knew how things were supposed to work and I knew they had not been following “protocol” all week. I also knew the hushed tones and confusion of the resident on-call doctor only fed my mom-gut panic. I am not one to panic. You can bet the house on that one; I remain calm. The middle of the night quickly turned into daylight; which quickly turned into the day nurse evading my questions and being way too cheerful.

None of it prepared me for the visit from Robert’s doctor. Dr. H greeted us early in the morning. Robert tried to eat, and watched cartoons. I smile as I think of this, him sitting up in bed eating, and watching cartoons. It was just like him to be as normal as he possibly could be. Dr. H asked me to step out into the adjoining parent room to talk. I remember him sitting next to me on the sofa, shoulder to shoulder; he was wearing his usual-white lab coat and tie-always buttoned up tight. He had taken a “shine” to us and we were told he was particularly friendly toward us, the nurses like that. He sat right next to me, not across a table in an office, but next to me on the sofa as he told me Robert’s leukemia was back. He calmly told me Robert’s transplant had failed; all the evidence of the numbers not doing what they should pointed to this. I do remember how the tears tried to scream through my eyes as he spoke while I sat in silence, but I would not let them. I absorbed every morsel of horror this man spoke to me. He did not move as I calmly asked, “If we do nothing how long does Robert have to live?” Staring at my son through the glass I heard him say, “6 weeks at the most.” It was October 5th. 6 weeks. When Robert was a baby 6 weeks was like a lifetime; at home his siblings were in school and thinking about Halloween. His dad was at home too, trying to salvage a business that had been run into the ground while we were away. All we wanted was to get Robert home and begin again. 6 weeks. Dr. H did not move. I sat there, still, staring, thinking. I heard him say, “Is there someone here we can call to come be with you?” I replied, “No.”

I stood up. I stood up and walked out to the hallway. I stood there thinking, knowing. The nurse knew not to touch me, I think she sensed if she did I would shatter. I told her I needed to go, needed to call Jeff, needed to…

Robert. I leaned in and kissed his forehead, ran my hand over the top of his head like the million other times in his life. Only this time as I did he did not know I was breathing him in and memorizing his smell. Even now, I pause in this moment and linger in the spot on top of his head…”Robert I need to go take a shower I will be back in an hour, will you be okay with Nurse Beth here?” “Sure Mom go ahead.”

There is a moment in a woman’s life when she knows a secret before anyone else, the secret that she is pregnant. Believe me, she knows the secret before anyone else. Here I was, once again, as I breathed my son in, knowing the secret of his life before anyone else…

As I walked outside on the most beautiful crisp morning and made my way to a bench, I realized once again I was alone. As the sun shined down on me, for a moment I sat there alone mentally climbing the mountain of facts and medical jargon and reality of my son’s fate, I reached up, arms stretched far and wide – stiff – surrendering – challenging the unseen of it all not wanting to dare think any of it was true. 6 weeks. No.

I made the call. I made all the calls that morning from that bench. How, on this vast green earth, I was able to make all those calls, I honestly do not know. One call that I do know how and why I made was the call before I called Jeff. I called his best friend. A dad of another patient that Jeff had become very close to; they were like brothers. I called him first. That brave, brave man listened as I told him Robert was going to die. I asked him to get to our house as soon as he could and to call me before I called Jeff. In the midst of all this I knew someone needed to be there when I told Jeff. No thought was given to delivering this news to me, a Mom alone in a strange town far from home, but there was no way in hell I would let Jeff be alone when he heard it.

I have never been so numb in my life as I was that day. It was a day full of a thousand days. Why would I ever want to revisit it? Revisiting it gives me a chance to choose if I would keep it or lose it. At the end of it all, I am grateful that no matter how painful it was, Robert was alive in it. There was hope standing on top of all the facts, truth and reality of his prognosis. I have never stretched taller, believed more, hoped bigger-loved harder than I did those days.

No one will call me and say they remember and know how hard this day is for me. It is one of those days tucked away inside of me that scares me as it approaches, weighs heavy as it lands on me, then, disappears into the oblivion of a million moments. This day changed every fiber of my being. I am glad for the small comfort of my safe home and a glass of wine.

“Iris” was one of Robert’s favorite songs. He used to ask me to play it over and over while I drove him around town as he watched the world go by…it was the closest to heaven I have ever been.

Peace.