October 13th, 2011 by Turner Simkins
“When all that I can sing
Is a broken hallelujah
When my only offering
Is shattered praise
Still a song of adoration
Will rise up from these ruins
I will worship You and give You thanks
Even when my only praise
Is a broken hallelujah”
– Mandisa Bardill
Tuesday morning, October 4 2011 was my day with Brennan. We awoke early with the rest of the gang, helping Christopher and Nat getting with their breakfast (a la Tara’s usual pre-school chocolate-chip pancake recipe) and ready for school. These days Brennan is feeling pretty good, serving as the attache to whichever parent is leading the morning charge. He get’s tired easier than most folks, but most days he is 100% focused on something worthwhile, be it school work, piano practice, Legos, personal art projects, etc. I believe, therefore, that his fatigue is less related to his post-transplant status than to the fact that he has a full day almost every day.
From all perspectives relating to Brennan, his disease, his spirit, his recovery, etc., this was a good week (this is a good week). That morning, however, the boys and I made our drive to school mostly in silence. It was a beautiful cool fall morning, as it had been every morning since the previous Saturday, when our dear friend and fellow AML/transplant warrior Cassidy Clark died in the arms of her dad, peacefully, eagerly looking forward to the final reunion with her mom.
With three elementary school age boys in the backseat, the quiet was occasionally broken by the predictable questions, of “why?”; “why her?”; “what do you think she thought about on her last birthday?” (she had turned eight just under a month earlier); and “do you think I will be as brave as she was, daddy?” “Do you think she will look the same in heaven?”…
The hugs leaving the car in carpool line lasted a few seconds longer. Both Nat and Christopher made a point to hug Brennan before getting out; and Nat even hugged me for the first time in front of his classmates in Lord knows how long, not worried about the line of cars that were piling up behind us as we said goodbye for the day.
It was both my day with Brennan and the afternoon of Cassidy’s visitation to which Tara planned to escort the Brothers. While Brennan has been getting stronger by the day, and venturing away from the bubble slightly more than months prior, we decided that: a) the funeral service was the most important of the two events for him to be present and b) it may be too many people for him to mingle with at the visitation; therefore, as we waved goodbye to the Nat and Christopher for the day, we left knowing that just he and I had a full day, and at least part of an evening together.
Just the week before we received news that Brennan’s Chimerisim test from St. Jude still shows that his peripheral blood consists 100% donor cells; which, outside of a full-blown bone marrow biopsy is the best barometer we have that his transplant is still strong and that his disease remains at bay. The only real issue which we continue to wrestle with, outside of slowly weaning him from the immune suppressant medications and steroids, is hemochrotosis (iron overload), wherein Brennan’s blood work continues to demonstrate about 600% higher iron content in his blood than he should have. Too much iron may present as chronic fatigue,heart irregularities, impotence, diabetes, dysfunction of the liver, cirrhosis or cancer and arthritis, among other things. Consequently, while not an emergent medical issue, it is nonetheless serious and is being handled as such.
Unfortunately (or, fortunately, depending on how one views this) the best way to deal with hemochrotosis is through a regular phlebotomy (or, in medieval terms, bleeding the child). We are told that the condition started because of so many blood and platelet transfusions over time (I have no idea how many he has had, but I am certain it well exceeds 100… for over a month in late 2010 and early 2011 he received double platelet transfusions twice a day!) and that, hopefully the phlebotomization of it all will eliminate it over time. It can also take a while; but assuming the best of circumstance, Brennan will be spending a good deal of the next several years in the hospital anyway; so what’s one more needle in the arm?
The procedures are conducted here in Augusta, although he certainly had the option to do them at St. Jude during his monthly visit. Fearing fatigue, following the removal of blood form someone so small, we thought it best to do it all closer to home. His first “bleeding” was this past Friday. Predictably, he crashed hard afterwards, but by nighttime, he was marching out the door with his grandfather, having challenged him to a putting contest. Actually surprised to see Brennan out of bed and with Pops walking hand-in-hand with putters, I asked Pops, “What are you guys doing?”, to which he responded, “the h— does it look like were doing.”
I had made the last St. Jude’s trip with Brennan and Christopher, while Tara and Nat remained at home. Indeed, Christopher “earned” his fare, having pulled himself from the depths of spelling failure to a test score of 93 in just under a month.
Christopher started this year at a tremendous disadvantage, not having been in a conventional school and testing environment since the first semester of 1st grade (he is now in third); consequently, Tara and I were not surprised when he started out the year struggling very hard to keep up with his peers.
Despite daily protest, tears, a lot of time at the dreaded kitchen table and an often times uncanny rational argument as to why he did not need to study, he had turned a big corner and truly earned the privilege of remaining Brennan’s wing-man, as he has since the very beginning. His motivation was the reward of traveling with his brother.
Brennan’s school work goes amazingly well. His “Aunt Julie” Batchelor continues to play maestro for Brennan’s harmonious approach to school, sitting with him one hour a day three days per week. It is truly amazing how well he can “keep up” with the prescribed pace of school with just a few short, but highly concentrated and focused hours of real study.
On this day though, there was no school for Brenny. Consequently, it was my job to accompany him throughout the day, doing my best to keep him occupied with things constructive and fun. Also, given that the whole Cassidy situation was hitting us all rather hard, I was very intent in keeping our dialogue open and honest. Of all the kids he had gotten to know throughout this experience, Cassidy was as close to family as you could get. A lot of kids have died, but they have always had significant enough geographical separation that this one was way different. Unable to shake the sharp pain of it all myself through those few days, it was a challenge gauging how, or even if, it had changed Brennan’s spirit.
It was all certainly affecting mine. Ever since Carissa’s death a month before, I have found myself as fragile as I have been, even more so than in the depths of battle in Memphis. As Tara always reminds me that our circumstances are neutral, and it is up to us to determine how we feel despite them (or in spite of them). She is right of course, but I have found myself on my knees more often than ever asking for the strength to keep it all together, to treat my wife and children with the love that they deserve as the antidote to fear; to embrace the work opportunities I have as just that, versus as obstacles to the balance I am seeking. They are blessings and part of the balance; but not yet finding my sails taut with the wind, they more often than not flap to and fro, often loudly, alerting my crew-mates of instability. Consequently, when new gusts explode across our bow, I cannot help but wonder if my crew is as affected as I.
We arrived back form the carpool line to find the sweep of the new fall breeze gently nudging the swing in our yard too and fro. It was not quite sunny enough to worry about Brennan being outside, and under the shade of the broad hackberry tree which has supported this swing since Nat was born, it was a good moment to sit on the back steps and gaze at my little man with wondrous gratitude as he swayed too and fro, quietly singing a private song barely perceptible above the rustling leaves.
The lawn under the swing was bruised and slightly trenched from countless little feet kicking with the incisive joy of the child gliding above. It was just this past July when we arrived home to a full lawn, lush and seemingly untouched, having been away for so long. But as the season hinges toward winter, the scars of daily life have rendered it as it was before we left. Another cycle of life has made its mark. With leaves falling and the green grass fading to brown, the collective experience of one intense year washed over me as I watched Brennan, suspended and beautiful, singing under the shade of the tree.
Feeling somewhat remiss at missing the visitation later that day, I felt we needed to find an activity somewhat more meaningful that usual. Stepping from the swing, he followed me inside where I had already prepared his morning medicines, representing the same plethora of pills and “squirt medicines,” which are the odd dosage liquid meds he takes through his g-tube, primarily intended for the supplemental feeding that he still requires (he has gained close to 9 pounds since arriving home this past summer, but has effectively leveled out around 23 kilos). Administering the anti-fungal medication, which takes the longest, I decided to take a chance in suggesting a daily deed specifically to allow us, together, to focus on Cassidy for a little while.
“Brennan, I know you would rather practice your music or even putt for a while, but what do you think about going to Mass with me at 12:15?” I asked him as he looked down at the white medicine being pushed through the tube into his belly. “Since we cannot see her family today, it may give us an opportunity to pray together and to focus on Cassidy in our own special way…. what do you say?” I asked not expecting too much of a reaction.
Instead though, he looked straight at me, smiled in his way said, “I think that would be a good thing to do daddy.” So that’s what we did.
Walking into the beautiful Church of the Most Holy Trinity where Tara and I were married eighteen years ago and where we recently focused our prayers for Patrick Chance, I held his little hand as we sat, staring up at the beautifully illuminated stained glass window casting multi-colored beams of light on his face and hair. Swept up in the electrifying effects and emotions of the place and why we were there, I have to admit not hearing anything spoken from the pulpit. With a few words here or there sinking in, the readings, the homily all dribbled off of me like light rain from an umbrella. I focused not just on Cassidy, but everything that has been stirring my soul as of late. Squeezing Brennan’s hand, a cacophony of anxieties came streaming at me in rapid fire, laser like fashion. Brennan, Patrick, the kids we were losing, the kids we’ve lost, kids on the brink, work, finances, my ratty old car, the boxes still in our living room unpacked from Memphis, the boys and Tara… am I behaving around them as I should? Am I truly grateful of the miracle sitting next to me? Do I have trust, truly?
A peacefulness began to wash over me when we both kneeled for the rite of the Eucharist. Brennan’s head does not even reach the top of my shoulder, which he used as a brace for his new head of curly black hair. It felt good to feel him next to me. I began to breath, listen and relax.
We approached the altar in slow deliberate formation, walking stride by stride with the row adjacent to us, one foot in front of the other. Brenny lead my way to the altar, walking in front. I tried my best to walk in lock step with him as we eased our way towards the nourishment I so desperately need.
I noticed that the floor was made from the same Alabama marble that line the aisle located in the little Dominican chapel at St. Peters in Memphis, over which I marched almost every day at this time throughout the last fall and winter, praying for a miracle, and praying that the Holy Spirit would direct my mind towards a sense of peace a purposefulness in the face of it all. Same color, same pattern, different path, same destination.
These particular floors are well over 100 years old and, of course, the marble itself represents millions of years of slow yet violent compression, stress and earth shaking events. Each fracture, each faint gray shadow, every beautiful discoloration and fracture has collectively manifest itself as a treasured material, rendering structure for ancient temples; inspiration to Michaelangelo; blocks for buildings; countless sculptures inspiring centuries of people; and, on this day, a beautiful path for me and my son to receive the promise of God. The flaws and imperfections embedded in this material are its nature. The cracks and disfigurements are its essence; not defects to the eye, but registered by the senses as evidence of ordeals long past creating a beautiful portage for countless souls trying to believe, yearning for reconciliation.
Side by side, Brennan and I said a prayer for Cassidy and for all the kids along the way, and yet to come. He then looked up to me, seemingly emotional, or probably just tired and said, “Daddy? Will you carry me to the car?”
Moments like this I am actually thankful for his diminutive stature, holding him like a small child, his arms, firmly around my neck with his soft hair in my face. We quietly walked to the car and drove home, quietly looking at the clear blue fall sky.
It was a musical day afterwards in many respects. Brennan seemed very much content and even comforted by playing his piano, both before and after his weekly lesson with Robin Allen, who has inspired Brennan to actually enjoy practicing. On the other side of the house, I played my guitar in my own sort of quiet time for reflection until Tara and the Brothers returned home, relieved to have seen Cassidy’s family at the visitation, but fully affected by the realness of what was happening.
The next day, we all attended probably the most meaningful funeral service I have experienced. Needless to say, it was a hard one in many respects; but in most respects, it was more of a celebration than not. This was confirmed over and over by testimonials from her everyone who stood in the pulpit and talked to us afterwards. She was ready and not afraid; that, everyone one was certain of.
That too was the inspiration for her new adopted mom, Jeni, who demonstrated the most amazing composure in singing a solo of a song entitled “Broken Alleluia.” There were many emotionally poignant parts to this service, particularly the eulogy rendered by Cassidy’s father Chad, but Jeni’s solo truly drove it home for me. The moment, the message, and the profoundly appropriate words to this song.
Seeking to regain one’s balance in life is paradox. Life is broken, fractured over and again, often times with seemingly unbelievable harshness and power. Only the spirit can sustain itself. Of course, we are all witness to many instances where brokenness of spirit is in itself the fracture that affects dramatic changes to, and even termination of, life. But the examples of those who sustain the injury, like Cassidy through the end, and like our dear friend Will Weston who died suddenly this past weekend, but with constant steadfastness of attitude throughout everything, always delivering a smile, always giving of self… The inexplicable cruelty of it all may initiate fissures and cracks that change who we feel like we are; but at the end of the day, together, they function to create what we become. Everyone who leaves us, through cancer or otherwise, leaves a mark, often times substantial.
I have been digging hard trying to find the reason to “pop the bubbly” since Brennan has been home. That’s what we should do, right? Celebrate? I too sing alleluia, overwhelmed with gratitude. But we are also tired, and the chinks in the amour seem to reverberate a bit louder than they used to.
Holding Brennan as I carry him up the stairs to bed, laughing with Christopher who’s endless source of joy and laughter literally dry my tears at times; feeling the warmth of Nat’s compassion for others as he quietly seeks out a pink bracelet to wear in honor of his friend who has just passed away; the embrace of my wife, who patiently guides me through the brambles of doubts, holding me firm, siphoning the demons from my mind with each rhythmic breath and stroke of my hair… each moment becomes a block from which I establish a place of balance inside, a place from which I can feel the tender memories of those who have gone before, continuing to inspire through the void. These are the mortar of the splintered path behind me. Every tile, either pure of composition or grossly flawed, is necessary, the amalgam of which guides us towards the course ahead. The extent of its span is irrelevant, but meaning is in every step, and the gift of beauty is offered through each unique imperfection that graces every stride.
I realized that my navigation system can’t tell me if the path ahead is rugged and long, or unreasonably short. But I know where I’ve been. And I know that I could never have made it this far without the divine compliment of grace expressed through both hard lessons and the love of others… the cost of living. For that I must sing, “Alleluia!” After all, an alleluia is an alleluia, broken or not.