Independence

July 29th, 2011 by Turner Simkins

“Oh, don’t go too far
Stay who you are
Everybody knows
You only live a day
But it’s brilliant anyway
I saw you in a perfect place
It’s going to happen soon but not today
So go to sleep and make the change
I’ll meet you here tomorrow
Independence day”
Elliot Smith

The waning hours of Independence Day, 2011.   All three of our boys were upstairs watching “Evan Almighty.”   Intuited from the occasional thumps and giggles from the bedroom floor above us, there was more taking place than a DVD.  The staccato rapid-fire of Brennan’s new Nerf Gun revealed that indeed the movie was nothing more than cover for fun-and-games long overdue.  Sitting down for a late night movie of our own, Tara and I glanced at each other with like smiles, simultaneously registering the sound never once experienced from our little apartment in Memphis.  It was entirely nostalgic and entirely real.

Alone downstairs, she and I were watching, among all things the “Band of Brothers.”  I had uncovered the collection earlier in the day as we started to sort through the myriad of boxes, representing the first real day of trying to reestablish a livable sense of order at 2103 Gardner Street.   As our little band mobilized upstairs for battle, Tara and I were absorbed by the emotional testimonials of the aged surviving members of Easy Company, establishing the tenor behind the upcoming reenactment of their experience at Bastogne.   They talked of their amazing capacity to endure discomfort, pain and hardship.   They recalled fear and the fleetingness of hope.   More than anything, they recalled that their dependence upon each other brought them through it all.

It could not have been an hour since I sat on the rear steps, listening to the sputtering of celebratory fireworks.   It was sticky, hot and dark.   A bouquet of mylar balloons lay prostrate in the yard, encumbered by the humidity, unable to float;  but in their repose, they revealing the large yellow ribbon around the big tree in our back yard, tied with care and stealth by one of several friends leaving “welcome home” banners and such for Brennan’s arrival only days before.

With  the whistle and pop of a dime store bottle rocket I enjoyed a cold sip of beer and thought about how the nose of the “front line” must sound to the weary soldier finally given leave from the battlefield.

For a day or so, it looked as if we were stuck in the trenches again, before finally taking off from Memphis on July 1.   Late that tuesday afternoon, I hit the highway in Tara’s car, bursting at the seams with boxes of clothes, medical supplies and toys.  Had I been pulled over for speeding, which was highly likely considering the rate at which I b-lined it for home, I would have been able to make a good case with the arresting officer for a tornado relief vehicle. Tara and the boys all had overnight bags and were prepared to catch up with me the next day, once again thanks to the generosity of good friends equipped to deliver Brennan home without the risk of traveling in a commercial setting. But about an hour-and-a-half into Mississippi, I got a call from Tara.   “Guess what?” she asked with an implied “you’re not going to believe it.” tenor to her voice. Brennan had been feeling bad that morning, and the night before.   His symptoms reminded me of the last line infection, which delayed our departure by two weeks. I was reluctant to leave when I did; however, his blood work that morning showed a normal CRP level and the doctors were certain that there was nothing wrong with him.   “You’re fine,” they said.   “Go home and get the house ready.” But Tara’s called revealed something else.  “The cultures are back and the same staph infection from last time is still in his line.  He is being admitted to the transplant unit.”

Here I was, sizzling down US 78 for Atlanta when I hit the brakes and pulled over to the shoulder, not certain whether or not I needed to turn around.   But I had a meeting schedule in Atlanta the next day.  There was no room for even a small human being in the car.  Should I turn around?  What can I do?”  I decided to Press On and, if worse can to worse, I would drop off the stuff in Augusta and simply head back then. But before I had even made it to Birmingham, encouraging news began to trickle back through a series of phone calls.

Without getting into too much detail, every since his first line-infection, there had always been the desire to ultimately “pull” the line and, ultimately, replace it with a port.   This would both provide him with an easier way to draw blood levels and administer necessary IV medications without having to “stick him” every time.    The problem was that his anti-fungal meds were required daily, and had to be administered by IV. As an experiment, a different anti-fungal drug, posaconisole, was tested.  It had been avoided previously because of potential issues affecting his liver.  His liver enzymes had been whacky for a number of months, representing one of the more consequential concerns affecting his treatment, terms of release, etc.   While we were putting our chips on the “posa” wagon, praying that it would relieve his dependence upon the central line, we also knew that this drug particularly singles out the liver.   We decided to give it a shot with fingers were crossed.

However, by the time that I found myself on the side of US-78, debating whether to turn around or Press On, we had already established enough feedback from bi-weekly blood levels that the “posa” was actually not having any negative side effects to his liver.  Consequently, when Tara finally heard from Dr. Leung about this particular infection,  his verdict was to “pull the line.  I don’t care if you do it here or in Augusta, but the line needs to go.” Dr. Leung’s instructions were simultaneously imperative and vague enough for us to coordinate this procedure at MCG in Augusta, effectively delaying his departure only by one day.   Tara called me several more times as I raced daylight eastward, and with each call, she seemed more and more confident that we were making the right move.
Walt Pipken, Brennan’s surgeon at MCG, had been in the loop with both me, Tara and the doctors at St. Jude, as well as Colleen McDonough, Brennan’s primary oncologist at MCG.

These two had been his strongest advocates and most solicitous caregivers two years ago when we began this trip.   Coordinating with them for his return, the decision was made for Brennan to spend his last night in Memphis “in-patient” in the transplant unit, in order to receive two solid line treatments of vancomyacin before quickly ferrying him to the airport and, hence shifting the entire situation back to 2103 Gardner St and MCG.

I arrived home the next afternoon at 4pm.   I barely had time to change my clothes before my mother and father picked me up to greet the plane from Memphis at 5. Mimi and Pat Pat were there, as well as the Berry family from next door.  Everyone clutched either a bit or a piece of a multitude of “welcome home” banners, letters, flags, etc.   As the plane pulled up to the little terminal, my father was the first onto the tarmac.  Brennan was the first off.  It was humid, and hot beyond hot; but seeing his smile as he dashed from the stairs to his grandfather, is forever impressed upon my meager mind.    He felt like crud the day before, but today he felt like a conquering hero.

Back at the house, more welcome home banners, balloons, tinsel and the yellow ribbon around the old hackberry tree made him feel even more special.  At least a couple of dozen movers boxes were waiting for us in the living room when we returned, and the place smelled a little musty, not having been officially occupied for too long.  But within minutes, the boys were playing upstairs with their next door neighbors just like it was yesterday (or maybe the day before).

But arriving home was not all champagne and trumpets.   Having lived in Memphis for as long as we have, and having established bonds with people and a place, which will both be with us for all of our lives, believe it or not, the first couple of nights were met with a but of homesickness of the other city by the river.   Nat was almost glum, missing his new buddies from the neighborhood, Target House and the Maria Montessori School.  The one who fought moving to Memphis two year’s ago more than anyone, may have been the most blue for Blues’ City. Christopher cried the first night.   telling me and Tara, “I feel like we left some of our family back in Memphis.”   That family spans through many households, many teachers and many mentors.   Having lived at the Lackie residence for the last three weeks of our journey, he especially missed “Miss Margie,” who he made a point to acknowledge at our first blessing around our own table. As far as Mr. Lackie goes, well let’s just say that he lives with us every day.   His beautiful idiosyncrasy of whistling around the house (all the time) is now alive and well at Gardner Street, with Brennan whistling constantly throughout the day.Love and appreciation are expressed in a lot of ways, but none like new affections of character reflected in a child’s confidence and behavior. Both have been affected by so many gracious people, but also by what now seems like a countless number of grueling circumstances. The Band of Brothers made it home. Some of them may be patched together and fragile as a paper egg shell, but they are bound together stronger with new fabric, woven with courage, love and grace.

For the most part, folks have been extremely respectful of our implicit messages that he is returning home under the condition of keeping isolated. As long as he remains on the immune suppressant medications and steroids, his immune system remains stripped of any real effective means of taking care of an infection of virus. Simultaneously, since he has demonstrated serious enough graph versus host disease symptoms in the past, it is too early and risky to simply “crank it up” and let him run. This time last summer Tara had been following another AML double transplant patient (like Brennan at the time) who developed a lethal case of GVHD from exposure to the sun. She didn’t make it. We know it is real, and we are not going to flirt with it.

So, as much we may have been tempted to “let things slide” a bit two two years ago, we do our best to avoid even slight temptation. The stakes are too high, and we are well aware that there may be no more treatment cards in the deck. But he’s back in his own room. He’s rediscovering his own toys, enjoying the familiar afternoon visits of grandparents (and the occasional Nerf gun battle with Reab of Mac from next door and the Morris boys). We are trying our best to limit visits to one kid at a time. And we also have Lucky. (the dog)

Literally raised by our friends, the Sellers, she arrived “home” with the excitement of a long lost twin. It is uncanny how she totally knew Brennan after all these months. She ran straight for him.

She could not have been treated with any more kindness and love over the past many months and has settled back into our family as a sweet and loving respite from all of the unpacking and reorganizing.

Generally, having a fluffy, shedding dog in the house is a huge step (probably the most radical change that we have made to Brennan’s environment.). But life is what it is. And this move has been a blessing for all five of us.

Nonetheless, we are serious about what he does and does not do; but we do have some exceptions. The first is church. We do our best to pick one of the less well attended services and seek a corner away from the crowd. I think this is working out fine; although there is always the awkward participation the “sign of the peace,” when everyone is supposed to shake hands with their neighbors to bless them with God’s peace. Of course, everyone wants to shake hands with their hero. Or if they don’t know him, they are inclined to seek out the boy in the mask and leg braces who is so clearly special. Our instructions are to bow, Japanese style; but it never really works. So we just take it for what it is, and do our best to show our sincere appreciation to everyone.

He is scheduled for monthly visits to St. Jude. We are planning for a year’s worth of “well visits.” So far we have not made it past 90 days such visits, but this time I feel different.

But everything feels different, and I mean everything. Perhaps it is the simple fact that we have basically been living underwater for two an a half years. Meeting babies who are now at tee ball games and grown young men and ladies who just a few years ago were still in elementary school, I feel a bit like Rumpelstiltskin. While we all do our best to find the value of this experience, it is easy to find the mind wondering what childhood experiences have been forfeited.

Or maybe its a mild case of post-traumatic-stress. I have indirectly touched on this before, particularly a year ago when we moved home, wondering how the assimilation was going to work itself through.

To be quite honest, right now I have no desire to assimilate or reintegrate with much of anything. Unfortunately, there is income to jumpstart and business matters that require ongoing regular attention. If I could wave a wand, I would take off with my little family for parts unknown a do a little living for a change. But with Brennan’s fragile nature and ongoing medical needs, not to mention the fiscal practicality of it all, that’s clearly not going to happen.

So, how to plug back in without sacrificing the other? How to dedicate the necessary passion to a worthy career without sacrificing the passion to live for what is truly worth living for? How do you saddle back up to the real world without taking your eye off the real ball?

I wish I had the answer. All I know is that sitting in the neighbors pool at dusk with Brennan, throwing a tennis ball back and forth for an hour or so, I have rarely felt so alive and complete. Is this the summer that wasn’t supposed to take place? I don’t think so. I think it just happens to be the first summer where my eyes have been open in a long long time. This is the ball I want to keep my eye on.

There was a time when we were able to just live. Not beating oneself up over life’s circumstances, or finding relief in knowing that it does not matter a hill of beans if I spend a weekday with my boys versus cranking out hours in the office, is more often than not easier said than done. But my collective experience over the past many many months at least has me trained to let go when the pull of inconsequential matters graze the palm of life’s hand; a hand that, if allowed ,will always protect the heart and push the spirit towards what is right.

We are blessed to have been pushed in this gentle fashion, rather than pulled in the wrong direction over the past two and a half years. Not to say that we each do not have our own internal struggles with it all, and where we go from here; but our family is together and strong. I pray that every day will last forever, because today I know that I can see, feel and embrace that for which we have fought so hard for. At the same time, I pray that the fight itself will have made us stronger when life’s circumstances change our lives again. Observing how we are all put together during this transitional period, we are all chugging along. Nat is slowly getting back into his Augusta groove, loving golf once again, now that his arm has healed, and totally immersing himself into a 60-Day work out routine so that he will be a true fighting machine come football season. Immersing himself into projects requiring intense amounts of focus is how he keeps it between the lines. It is how he did it at Maria Montessori, and it is how he is doing it as he tentatively prepares for the new school year. One-on-one, he expresses how many real friends he has in Memphis and how much he misses them.“I don’t know what to do Daddy,” he will say regarding how he feels torn between having to pick between two places he loves. But as with the move from Augusta to Memphis, he will do fine. He is great kid and knows that, above all, being with his brothers is the only real choice he has to make.

Christopher is something else all together. Always smiling. Always trying to get a laugh out of the crowd, he also may be handling all of this inside harder than anyone. Moving to Memphis, he was sort of the odd man out, when God blessed us with Fletcher Golden and the opportunity for him to become an extraordinarily self-reliant little man. Here, as Brennan is relegated to the indoors pretty much 23 hours a day, Christopher is once again the wing man. His friends are at the pool, or at the beach. His cousins are all at the family reunion. And like day +120 of transplant #1 (January 20, 2009), Christopher is right next to Brennan, playing the role of wing man. He is very sensitive to even constructive criticism, but primarily, due to the fact that he still does not really know what to make of this crazy childhood. The notion of friends dying is something he asks about when we say our prayers. He never (ever) wants to be alone, requiring someone to be with him at all times (particularly upstairs). If I am upstairs alone with him and walk down for a minute or two for whatever reason, I will hear the sudden pounding of little feet, thumping down the stairs once he realizes he has been left alone. We have a heck of a time getting him to do his reading and to focus on his school related things; but give him a chore and he is all business. On the instinctive side of the fence, I will put him up against anyone.Last night I was calling for Lucky on the back steps. Bed time. She sleeps in the Kennel. As I was hollering her name, Christopher hollered downstairs for me, “Daddy!, Daddy, Daddy, Daddy, Daddy….” Patter, pat pat, came the footsteps when he silently grabbed my hand, pushed his other finger against his lips, for me to be quiet, and led me up the stairs. We walked into Brennan’s room, where he was already asleep for the night. He pointed to Lucky at the foot of his bed and beamed at me. “Daddy,” he said in his best whisper. “She is not outside. She’s with Brennan where she is supposed to be.”

On the subject of instinctive things, I would like to point out how much Tara’s motherly instinct, and generally perceptive intuition continues to manage the ties that bind us all together. For the past few weeks, she has been up to her eyebrows in boxes and organizational projects, as we do our best to make our house truly enjoyable to live in once again; but throughout it all, she is the one who monitors the heartbeat of all who dwell under this roof. From my perspective, I think she is the Holy Spirit manifest as my wife. As I struggle with emotions, and decisions of every type (from things to address in Carepages, to work matters, to how I am responding to a child;s emotions) she is a fountain of remedial counsel. I do not know if she can just feel what I am struggling with inside, but the more I focus and pray for solace with regard to my struggles, she always seems to hold the key.

As for me, well thank God I have the resource just mentioned. But looking back, I really do not know what to say.The other day I was driving back from a business meeting in North Carolina. My I-Pod played a Counting Crows song that, just a few years back was one of my favorites. Indeed, I used to play it on the guitar; pretty well too. Driving down GA-77, I cranked up the volume and realized that I could hardly remember a single word. At one point in my life, it had been part of my repertoire, part of who I was at that time. I felt sad and someone what ramshackle for not knowing it any more. But new songs have emerged. And with the grace revealed through so many sources, I know that there are more ahead. With that in mind, I am not going to stress about what has been lost. Indeed, I may take the time to reacquaint myself with some things as we move on down the road. But the repertoire itself is still strong. Its just different than it used to be.

And as for Brenny. Well, needless to say that he remains appointed to a role that, while seemingly unfair, has served to strengthen our faith and our love for one another more than anything I have ever experienced. Just his smile makes my heart soar more than I possibly explain. It always has, and I embrace it with every fiber in my being.With night swimming being basically his only allowed outside activity these days, every evening around seven o’clock he emerges downstairs in his baggy swim trunks and swim shirt, hanging loosely around his bony shoulders. The same shirt fits Christopher like a glove. But Brennan dons it with as much pride and eager anticipation as his dog Lucky at mealtime.“Jump in Daddy,” he smiles coming up for air at the Lynn’s house across the street, offering one of several private pools that are shady late in the afternoon. I dive in sailor style, glide to the bottom and back up slowly. As I make the turn for the surface, I look to see Brennan suspended in the water, weightless. He is smiling. His beautiful grey/green eyes penetrate the water straight to my soul. He embraces me, and together we float, suspended from the world. The amount of time is irrelevant. A split second, and everything I need to know, feel and appreciate has confidently fastened itself upon me for all time. He is an example of the most amazing psychological and spiritual strength that I have yet to encounter. Things that would bring most of us to our knees are nothing to him. While he may have fear, he never expresses it. In his words, “when I felt like my life was being pulled from me, I focused through it.” There is no fear because he has no reason to have ever felt separate from God. He is not dependent upon God in the way that many of us talk about as we seek divine supplement for our own weaknesses; but rather, in my best assessment of how he feels, has never felt or thought anything that has every disengaged his being from the love that has always been so overwhelmingly strong in his little spirit. As such, like his friend Cassidy, who faces the worst consequences of cancer not with fear but with resolve, fear is not a part of him. There is no guilt, no feeling of having done anything wrong and, therefore, an uncommonly precious attitude that inspires.Whether it is the Brennan we know now, or the Brennan we knew as a child, or the Brennan we hope to be, we pray that he inspires us with his accomplishments and in his desire to help others for many years to come. Either way, though, we know him. We always have, and we always will.

NTS

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3 Responses to “Independence”

  1. August 30, 2011 at 11:41 am, sandra timmerman said:

    Bravo for all of the Rice/Simpkins. Such wonderful news. May your great progress continue, and that precious boy get really dirty tennis shoes. Sandra Timmerman

    Reply

  2. August 30, 2011 at 4:09 pm, Donna Lovelace said:

    Welcome, welcome, home.

    Reply

  3. August 31, 2011 at 8:41 am, Mike Firmin said:

    Prayer is THE work of faith, of hope, of love. You all have mine.

    Reply

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