Channels of Grace

Posted Jan 24, 2011 12:14am

“Rain is grace; rain is the sky condescending to the earth; without rain, there would be no life.”
John Updike

Sometimes in the depths of cold wet winters, its difficult to remember the feeling of warm sunshine. I remember it from my year in Chicago. I also remember last winter here in Memphis, when Brennan’s second transplant and all of the grueling recovery associated thereto took place in the depths of the coldest winter I had experienced since my Windy City days (Michael Jordan was playing for the Bulls, if that offers a perspective of how long ago that was).

It was tough, viewing snow storm after snow storm through Brennan’s hospital room, finally being dismissed to Target House just before the leaves of spring reemerged with signs of hope that we may have indeed rounded the corner.

Maintaining positive energy during times of darkness is Can be all consuming. With persistence of will, even foraging in a snow laden winter forest can yield concentrated channels of life and intense fulfillment.

The first snows settled on Memphis this year with the cold revelation that Brennan’s third transplant was failing. As the skies darkened, everything began to take on a new burden. From snow laden trees and lawns to the sharp wet coldness covering everything, the first reaction is to withdraw, clinging desperately to fragments of warmth and dryness.

Two weeks ago, as Tara and I struggling under the weight of the imposed decision upon us, we were both driven to to our dwindling reserves. Recognizing the dearth therein, we both started reaching outside.

On two separate mornings I talked to Fr. Jerry Ragan from home. He knows all the boys well, and has been with us since offering Brennan the sacrament of anointing the sick almost two years ago to the day, On both occasions I had dropped off the boys at school, and feeling uncertain with regard to my strength moving forward through the day, I called, he answered and we talked Sitting in the parking lot in front the Chilis Care Center, we talked about some pretty serious stuff. I could see from my windshield, Brennan’s room, now easily identifiable by the 1,000 origami birds resting in the center of his hospital room window. These are the birds hand made by the children of Maria Montessori, and carefully framed with the inscription, “For Brennan Simkins and all Children who Fight Cancer.” It was created as an auction item for the school fundraiser just prior to Christmas and purchased by a confederation of parents and faculty members for Brennan. The money never found its way to the school, but instead to Press On.

I did a lot of the talking, realizing how difficult it is to accurately explain the medical dilemma without overshadowing the spiritual struggle we were facing with regard to both Brennan and all the boys and the children who continue to believe in this fight. The children who’s little hands manipulated tiny bits of paper into the shape of swans, each representing a small prayer and a tremendous gesture of love.

In describing to Father Jerry how difficult things feel when alone, pondering the metaphysical, fighting the physical, I noted to them that when one is near Brennan, no matter how bad he’s feeling, his energy is so strong. His spirit and desire to beat cancer represents the ultimate gesture of gratitude, for a life which consistently delivers fulfillment through the pain and disappointment. Despite the many obstacles, his love always shines through. “Doubt” is not not he radar screen. Just living and loving what’s in front of him at that time.
Looking where the birds resided in Brennan’s room, pondering the powerful message from these children and the generous people who purchased this for us, Fr. Jerry said: “Brennan a channel of grace,. And from what I hear from you, it sounds like Tara you and all the boys serve the same role for one another. It is a gift.”

A break in the ice. Light through the clouds. With these words echoing, I became more confident in what I was hearing from Tara and Brennan about what HE wanted to do. It was through these channels that our final decision was validated, and through which our confidence moving forward is now supported.

Sources of light through the darkness; warmth for the cold; hope from the unknown; the half-full part of life’s cup. Nothing else exists. How can it?

With the decision behind us and diving literally head-first into transplant number four, we started out the week feeling pretty good about things. With some of the harshest chemo, form a side-effect/reaction perspective, behind him last weekend, he started the week in surprisingly good form. That’s his style.

Indeed, all things considered, he has concluded the week in pretty physical shape. One must keep in mind the scale from which this is all measured; but he has been in such good form in fact, that once again, he is baffling the experts and inspiring the many doctors and nurses who are in contact with him daily

Concerns about his ability to survive the conditioning, considering both the amount of toxic conditioning meds he has experienced over the last two years, as well as the presumed diminution of vital organ function as a result therein, had been a major factor with regard to those anonymous members of Brennan’s team who disagreed with the fourth transplant as a viable and humane alternative to palliative care. WIth organ functions far exceeding what was estimated, and with relatively minor side effects through conditioning thus far, some of those folks have changed their tune and are now in the cheerleading section. On more than once occasion, Tara has received the comment from doctors and nurses, “you made the right choice.”

This is not to convey that he has by any means sailed through anything. There is still some residual bleeding of the bladder. Blood pressure has been a concern and the affects of the chemo as either a means of choking the viral condition which has wreaked havoc on his skin or as fuel to the fire has yet to be determined. But suffice it to say that today, day minus-1, he has once again earned MVP level distinction.

The hardest part has not been the chemo, but the separation of family. While January 1 represented the first day that immediate family members seven and older were allowed to visit, we all viewed this new change in policy as a timely bit of providence, giving Brennan the added boost of being able to mingle with his Brothers, particularly on his birthday (this past Friday, January 21).

I arrived in his room Tuesday morning feeling pretty pumped and gung-ho about the cheering section situation. Brennan was up and talking. Plans were moving forward to have both sets of grandparents here soon, as well as aunts and friends from Memphis here helping out,

Tara was to have started her own conditioning this past Thursday. This transplant, versus the last three, is a peripheral blood transplant, where the stem cells are harvested from the donors blood versus their actual bone marrow. It was explained to Tara (as we understood from having had numerous discussions with other parents who have also been peripheral blood donors) that her conditioning meds, intended to activate the stem cells form her bone marrow into her blood-stream, would gradually make her feel pretty rotten. With four days of conditioning, by day zero, most donors feel like they have a bad case of the flu.

Not only would the outside help serve us well in keeping Brennan happy and preoccupied with fresh faces of people he loves, it was doubling as a means of helping out where Tara was scheduled to be out of commission by the weekend

But the other shoe dropped when, sitting in Brennan’s room that morning, my phone rang Looking at the caller ID screen reading “Maria Montessori,” my gut blurted out, “somethings wrong with one of the Brothers.”

As it turned out, Christopher had a fever again. His teacher calmly explained to me that his facial rash (typically associated with the waning stages of Fifth disease, which has been rampant throughout all Memphis schools) was a tell tae sign that he was not feeling good.

Fifth disease is the layman’s name for the 5th virus, also known as Pavo virus. In children it typical presents with cold and mild fever symptoms. In an immune compromised (or in the case of Brennan,Immune vacant) child, it cold be lethal. A quick email to Dr. Leung, resulted in the sentence that Nat, Christopher and I were strictly off limits to both Brennan and Tara for an unknown period of time, no less than Day plus 1 or so. To risk infecting Brennan… well, what else can you say. To risk infecting Tara, well, there goes the donor. Tough news, but tougher consequences to defy the restrictions.

Now everyone coming to help out was truly covering bases. With me and Tara effectively both out as caregivers for Brennan, we found ourselves doubling up with grandparents. Aunt Kay and Uncle Frank volunteered to come up from Covington to help cover Nonnie. She and Pops were originally scheduled to be here simply for the purpose of celebrating B’s birthday. Next they found themselves helping to cheer him up on his birthday in the hospital. Further changes in plan put them firmly in the trenches where I was t have been.

They arrived last Thursday, just in time for yet another bone-chilling snow-day on Friday. OF course, it was just the boys and me, as no one who visits with us is allowed to see Brennan. Crossing the line means forfeiture of Brennan privileges, so we set out on the week to make the best of it.

I broke the news to Nat ob Tuesday just after school and on the way to his basketball game. Sitting in back-seat of the car he started crying. “I can’t take this any more” he cried. “We’re going to miss his birthday.., Why Brennan!”

I got out of the car and held him hard, as much to help him collect himself as to help Christopher avoid the pull of fear. As I held him tight , telling him, “you know, Nat, we’re all scared and none of us understands why things like this happen, but we know that Brennan’s love for you is always there, whether you are allowed to be with him or not. We have to keep positive for Brennan’s sake, but also so that we can all see how much we have to be grateful for”

Looking over to Christopher fearing that he too would soon be falling into the realm of inconsolability, he said “Daddy, can you really jump a skateboard off a table? I think Reab could do it.”

The conversation with Nat was too intense for Christopher not to notice. Tara always points out that in times of distress or disagreement, Christopher is always the one to find the happy common ground, pulling everyone back to lightness. A channel of grace for his brother. Nat. A voice of reassurance for me, reaffirming the depth of fortitude and kindness in these Brothers. Whether an expression of need or uncertainty, or a statement of affirmation, their feelings are as central to our capacity for solicitude as Brennan’s will is to to our faith. I mean, how this is all affecting me and Tara is one thing; but for these guys… how they live the rest of their lives is at stake. Sitting in a dark garage, holding a weeping older boy, while smiling in relief at the other, I experienced the dual nature of grace; the path through which it is received and the importance of passing it on, taking the light from one and offering it for another.

The channels have been wide open all week. Not being able to be with Brennan on his birthday became a inconvenient detail, as the love and encouragement flowed freely in both directions. Thankfully, we have been able to take advantage of many 21st century amenities, using Skype and I-chat to be with Brennan on his birthday and vice-versa. While isolated from family members across town, the important channels remain open.

Friday night, Nat, Christopher and I even sang Happy birthday and partook in Brennan’s birthday cake, prepared by St. Jude’s and enjoyed by all thanks to a clandestine delivery to our front stoop by Tara.

Brennan’s gifts were plentiful. With Lego’s, model airplanes and video games, we had a boy who was predicted to be bedridden and sick all day due to the introduction of Rabbit ATG, a chemo with a nasty and brutal reputation. Far from energetic, he was happy and relatively energized.

A call from Peyton Manning, thanks to the intercession of our friend Jimmy Lackie and Peyton’s brother-in-law Will Thomson, had Brennan sitting up in bed talking to this wonderful and generous man with the cool familiarity an old fried. Before it was over, Brennan had Peyton agreeing to a golf match back in Augusta later in the year; Brennan and Peyton vs. Eli and Nat.

Unfortunately, Brennan was exhausted a few hours later when Eli called; but with the genuine benevolent good nature of his brother, Eli called back three times before the weekend was over to express his concern for Brennan’s well being and prayerful interest in our family.

Just knowing these guys were interested in him delivered a floodgate of encouragement to this boy who both needed and deserved a birthday to remember. Before the day was over, he received well wishes and calls of support from Craig Stadler, Phil Mickelson and Jack Nicklaus (who shares Brennan’s birthday). He was only able to muster the energy to speak with Peyton, but his little ego was soaring with plans of golf games, football and bragging to his brothers and friends about his day.

But the real encouragement came from videos ,voice-mails and well wishes from his friends back home. The Morris, Bachelder, Moses and Berry boys sent a video happy birthday message, complete with cake, singing and birthday hats. God’s grace was everywhere; and whether spoken through the mouths of a celebrity hero, or sung through the chorus of his buddies back home, all of us were uplifted with love and gratitude.

Tara and particular was affected in a big way. The second most important player in this game, she called me over and over to express her confidence and encouragement. From the nurses who were pumped and inspired by Brennan’s ability to truly enjoy a day which was to have been questionable at best, she was getting the pep talk she needed to help her fight her own side effects. We want her cells as pumped as she is. So far, so good.

Thanks to a lot of help from a lot of family members, friends and medical professionals, the channels of grace shinning on Brennan were lighting the way for others.

Knowing that he was headed back to Augusta today (Sunday), Pops crossed the line to spend some quality time with the Brothers Saturday night. Nonnie stayed and will be here through transplant Monday and Tuesday, as will Mimi and Pat Pat and Susie. Frank and Kay spent Saturday night with Brenny and delivered another good report for another good night, despite the predicted side effects of the ATG. And Susie arrived Saturday, to hold Tara’s hand over the last days of her conditioning and to be at her side (literally) during the stem cell harvest, which is a six hour procedure both Monday and Tuesday.

Today the side effects finally caught up with Tara. Taking the Brothers to late afternoon mass I caught her on the phone. Clearly sounding and admittedly feeling terrible. “I feel like crud,” she gargled fro her hotel room, where we set her up hopefully to rest quietly and take advantage of room service. “But I am so grateful and encouraged right now, that there is no way I can complain about a thing,” she said, mustering a smile I could feel through the phone.

Day zero is technically January 24 (Today), although Brennan will receive the cells both Monday and Tuesday. Once the cells are harvested, Tara’s normal energy and physical-self are predicted to be gradually restored. We are hoping that by Wednesday, the grace that she so generously exudes to all will no longer be clouded by fever and chills.

Mimi, Pat and Nonnie will be at Brennan’s through the transplant. Tara and Susie will be there for the tail end and to keep him smiling through the nights. The Brothers and I are still quarantined, for what at this point is an indefinite period.

Starting with with one little boy’s firm affirmation of will, lightening our own personal burdens and opening our hearts to the unbounded grace afforded us from so many sources, the abundance of true compassion and love has enveloped our world with brightness and warmth that just one week ago seemed unimaginable.

We are expecting more winter weather this week. ALthough Nat Christopher and I are separated from Brennan and Tara for what could be a long haul, we open our eyes and hearts to the light that shines forth through so many. We receive it with every ounce of energy in our being with gratitude and, therefore, hope. We seek it and embrace it.

We hope these channels of grace are open to you, as we do our best to redirect Brennan’s grace to everyone who prays and cares for him and for all of the children who Press On. It seems like keep asking everyone for the same thing, time and again; but we will keep knocking on the door as kong as there is hope on the other side.

The next two days define the ultimate channel of grace (from mother to child) as Tara’s cells are lovingly offered to Brennan. This child expresses his grace to her and to all of us with every smile and every loving embrace he can muster.

We are fervently asking everyone we know to dig deep, offering prayers of positive intention and gratitude for Brennan, for his boundless spirit and for the hope that we are all so fortunate to have. Please spread the word; the word that a fine little boy still needs your prayers, and the fact that through him resides a limitless source of grace and love for anyone willing to receive it.

The channels are wide open. Receive the light. Let it warm your soul, then pass it on.

NTS