Circular

I've posted this image before, and looked at it hundreds of times more than that. It's James at the arboretum, munching. I always thought it was funny because of how warily he seems to be addressing the camera. I miss that.

Like this picture, I've noticed often lately that things seem to be on repeat. Perusing through old entries I noticed that I used some of the same words: "derailed" twice in a month. Derailed indeed. Many of the same feelings keep repeating, being resurrected, buried, and resurrected again. The longer this process goes the more I am surprised by the many twists and turns it takes. The path is never straight, pausing time and again to circle back in on itself. It reminds me more of a river than a highway, complete with oxbows and dead ends. There's no certainty about quite where you'll end up.

When I was young, my Grandfather, also James, used to take me fishing on the Red River in Louisiana. A tributary of the Mississippi River, it snakes its way leisurely from the Panhandle of Texas generally southeast until it meets the Mississippi. We particularly fished the little oxbow lakes along its way, little abandoned offshoots that never quite made it, experiments before the river took another course or overcame the obstacle in its way. It's all very vestigial. I sometimes feel that way now, running down dead ends only to come out and hunt for more.

There were no circles and abandoned paths in the grief I experienced before James died. When my grandparents died or someone similar died there was a sense of finality. Shock, yes, certainly for a while, but it passes. It was expected after all, if not when it happened then eventually. Anger, denial, bargaining, acceptance. It's the last one that causes trouble with the death of a child. You can accept that your parent dies- they had their time, their moments, their joy. It is much more difficult to accept that your child is dead. On a visceral level, I do not accept James' death. I acknowledge it certainly, but I cannot yet accept it. I cannot accept that it was his time, that is was right, that it happened for "a reason" as some people sometimes say, a well meaning if callous phrase.

So I keep circling round and round that. I can acknowledge things, even good things that have happened since James died. I've written about them here. But the fact of his death can still be incapacitating. It stands as a violation of the natural order. And so I keep circling. Round and round the little pockets of grief, cycling through all the stages in an hour or a month. People often tell me to embrace it, to give it time and to work through it, but sometimes it's hard to do that, especially when I feel like I've been there before. Sometimes it feels like an admission of defeat to pause, retreat, and recover the ground I've already walked through, circling back over and over again. But I don't know what else to do.

I know part of it is just accepting that there is no "acceptance" I'm likely to stumble upon. I'm not going to wake up one day and decide "Huh, well I guess it's ok my son died. That wasn't that bad." Because it was that bad. I think a better, more reasonable goal might be hoping I can accept that I won't be accepting it, but that I might accept that there's not a timeline, not an easy answer, and that I'm never going to "accept" what happened- that I'm not going to come to the apparently zen state described in the pamphlets in which I'm sublimely "at peace" with everything. A more achievable goal might be that I can accept that I will live with it. I don't know what that looks like, but I'm curious enough to keep looking. So I'll keep circling until the path works itself out. I'd rather do that than rush to a goal I'm not sure of.

Thank you for your continued thoughts and prayers.

New Year's Eve

Here's James in one of my favorite cell phone pics of him, a candid James in the bath shot, from near New Years last year (how I wish the photos on my phone were time-stamped).



I never liked New Year's Eve. The fireworks, the lack of purpose, the hollow resolutions always fell flat to me. Always advertised as the biggest party of the year, I long felt I'd been sold a bill of false goods. I spent too many New Year's Eves at home and sick, recovering from one operation or another, nursing jello and resentment for my able-bodied peers. When I grew older, I became more annoyed because now it seemed I'd missed out on the foundational precepts of the holiday. The ball, the kissing at midnight, the countdowns. These all rang hollow to me, celebrations without context.

What after all, is there to celebrate? The year changes, there's nothing novel to it at all, it's not even exact- otherwise we wouldn't need leap years. One more trip around the sun, one of several billion before and several billion to come. Yet lately days have taken on arbitrary meaning to me, the 16ths and the 29ths of the month suffering under the weight of all that has come before. Time passes faster now, sometimes I feel as though I went to sleep one day and woke up six months later. The time we had with James feels so full, and all that came after so brief in comparison, abbreviated by what its relative lack of importance.

Looking back on some of the entries from our time in the hospital and then at home before we lost James, it really wasn't that long at all. Less than four weeks passed between the time when we found out James was sick and when we held his funeral, but that time was filled with so much. So many doctors, plans, and news. So much research into new types of cancer, evolving diagnoses and treatment protocols. Spurts of adrenaline- we have to do this now- interspersed with immense grief. And then, after all of that compressed into one little ball, nothing. It seems like a flash between then and now. Time itself seems split into two segments, there is Before and there is After, with the timeline delineated by a quick stab of trauma.

Perhaps that's why I'm excited to leave this year behind. I'm eager to see 12 on the end of the date instead of 11, because there are so many horrible dates that end in 11 and none in 12, so many days I'd like to leave behind, though I know I never will. Last year we took James to a New Year's Eve party and left early, as James himself quickly decided that he would have little patience for for fireworks and champagne. And Master James had complete decision making authority over all matters relating to the schedule. We made it home shortly before the New Year and it passed with barely a notice, fireworks cracking in the distance, the dogs alarmed. James slept through it all, and so we slipped into 2011 with no suspicions. This year, I intend to welcome 2012 gladly, eager for a better year. Suffice to say, if the Mayans were right about the apocalypse I am going to be very annoyed. I don't have the patience for any more life-altering disasters this year. So I'm eager to say good bye to 2011 and 2012. I just wish that we had James to share it with.

Happy New Year to you all. Thank you for all of your support and your prayers this year, we needed every one of them.

James' Eulogy

I'm late in posting this. It's been a full month since we held James' service. More time has passed between now and then than between the time he was diagnosed and when he passed away.

That equation does not quite add up on the surface. The time we spent in the hospital, as terrifying and as breakneck as the pace was, felt- and often still feels- like it lasted a lifetime. Days were full of events, rounds, tests, and a thousand other things. We were always on, always alert and waiting anxiously for the next hurdle. It feels as though time stopped, even if the world did not, and hours dripped by while we waited with him in that room. We were frozen, out of sync with the rest of the world. Since the service and James' death, everything has gone much faster. Slower at first, and then slowly you feel as though you're slipping back into the current of the world, into its rhythm. The weeks resume their regular pattern. Weekdays begin to differentiate themselves from weekend days, schedules become less urgent, and often completely voluntary. Sometimes that's a blessing, and it's wonderful to feel as though you're part of the world again. Other times, its infuriating, because the faster time passes the quicker the gap between James' final days and the present accumulates, and in an odd way, the farther away we are from him. Sometimes I feel silly thinking these things, wishing time would slow down again- however much I want to catch my slate of Sunday night TV again. But then again I'm slowly beginning to learn that there's no right way to do this, no correct form of mourning. There is no template. There's just what happens.

But I digress. I logged in just to copy paste his eulogy and post it, and the next thing you know I'm dwelling on time and grief. I suppose that just goes to show how flimsy the "plan" is nowadays. In any case, here's the eulogy Dr. Fiedler delivered for James. It's beautiful, and a fine tribute to James. We are incredibly grateful for his eloquence.

Eulogy for James Camden Sikes
Dr. John Fiedler

This afternoon we gather in celebration with a sense of deep gratitude for the life of James Camden Sikes
Do we need to state the obvious? That we would have wished more time for James and his adoring parents? More months? More years? That goes without saying.
Yet Christian faith has always been an affirmation of kairos over chronos.
Special moments over cumulative time.
Quality over quantity, if you will.
And that’s why we are grateful and that’s why we can celebrate
That’s how we can hold a giraffe party in this hallowed sanctuary in honor of our sweet baby James.
Because of the profound concentrated joy and light embodied in his remarkable 8 months.
And we know that when something very wonderful comes to an end that our good manners dictate that we take time out to give thanks to the one who made it possible….and so we gather this afternoon to thank God for giving James to us in the first place.

Matthew and Kara first called him "Bean" for the first 20 weeks in the womb because that’s what he looked like on the sonogram.
Kara had guessed he was a boy and she was right!
After he was born, they called him "Baby Bird" because every time it was time to eat he cocked his head and opened his mouth!
They also called him “Baby Bear" because of Matthew and Kara's obsession with all things Baylor.
And finally, they call him "Jamesie the Giraffe". There is a song called "Joshua Giraffe" that Kara listened to when she was little.
James was born by C- section because he had the umbilical wrapped around his neck but he was sunny side up and bright eyed ready to take on the world!
He had a a shock of hair on his head and a contagious pixie like smile filled with mirth and joy.
When he was 5 and a half months old, Kara and James were shopping at the grocery store.
She was checking out and James was sitting up in the seat. Kara turned around and a lady had picked you up out of the shopping cart and was holding him!
Kara calmly asked her to give her back her baby.
The woman explained that she was a grandmother and just "had to hold him."
That she couldn’t help herself!

For these past four weeks we have all felt like that grandmother in the grocery store.
We have all wanted to hold James in our arms, in our thoughts, in our prayers.

James was baptized on Mother’s Day.
He had such a great head of hair – an explosion of auburn and that coupled with his engaging precocious smile and his dancing eyes seemed to say,”Hey, let’s play!!”
He loved to play and laugh.
He embodied such joy.
He made me laugh.
He made a lot of people laugh.
And the baptism was an external sign of what we knew to already be a reality: that James was a child of God.

He certainly has been the light of Matthew and Kara’s life.


Last month James got sick the way that babies often do spitting up
So his parents took him for repeated doctor’s visits
Looked like a bug, maybe the flu, maybe ….we’re not sure.

On Wednesday June 2, they took James to Children's Hospital and get some fluids
And thus began a long odyssey of assessment, diagnostic, CT scans, and MRI’s
And the discovery of an aggressive rhabdoid tumor

Throughout the gauntlet James was essentially James
Happy, smiling, playful playing peek-a boo with the hospital bed
Matthew and Kara chronicled their daily trials, hopes, and pains in a blog
That so many of you followed
Because they are both such skillful writers, we experienced it all too.
The profound love, the heartbreak, the joy
It was hard for them to be so caring and capable and then reduced to being helpless and dependent.
Waiting is the hardest work of all and Matthew and Kara stood vigil and navigated through the maze of hospital care and procedures.
As Matthew wrote:
One thing this experience has definitely proven is that any sense of control our actions might lead us to believe we have is purely illusory. As Kara said, all we can really control is ourselves and our reactions.
And they worked hard to do just that.

As Kara wrote:
Through it all I choose to have the attitude that God is the Great Healer. That He knows and loves James more than we can fathom. I choose to believe that James should be surrounded with a positive attitude, that all things are possible. That's why I implemented the "no crying" rule in his room.

It didn't mean that people couldn’t cry. It just meant that you didn’t cry in James’ room. Not in front of the menagerie as Kara liked to call it.
James’ room and bed were filled with stuffed animals of every stripe. A menagerie. A collection of soft, plush, and silky giraffes and monkeys- giraffes.
He had a giraffe blanket, a giraffe pacifier, his Sophie the giraffe, a plush monkey. No member of the menagerie was superfluous, and James was an equal opportunity chewer, thrower, and cuddler.
He had time to get to every toy, no one was left out. The doctors tended to James and James tended to his zoo.
The MOMS group from our church came up to the hospital and delivered a labor of love- a prayer blanket that they all been worked on.
It’s a beautiful blanket and their visit was well timed and so much appreciated.
Matthew and Kara had had a rough day.

Throughout their ordeal, Matthew and Kara have expressed a deep appreciation to family, friends, and church – everyone who prayed and visited and encouraged them.
Helped and supported them when it seemed that they couldn’t carry on any further.
We all prayed to God for healing and for James to return to his vibrant energetic life.
But then we all know the hospital narrative
James had a successful surgery that removed most of the tumor.
But then the tumor came back.
And there was nothing else to be done.
But, that’s not quite correct.
There was something very special and profound to be done.
Bring him home.
Matthew and Kara wisely chose to extract him from the tubes and the wires and bring him home to his room, to his bed, where he could be shrouded in love.
Go for a ride in his stroller.
Have a giraffe birthday party complete with a giraffe and his name on the vanilla cake.
Be at peace.
Be at peace in the arms of those who loved him.
And this past Saturday at 3:50 p.m. James was released from the torment of the cancer.
James beat the tumor .
The little angel took flight.
As their blog says, Matthew and Kara had him for 8 months. That’s a long time to spend with an angel.

The book of Genesis begins with the story of the Garden of Eden and it explains how Adam and Eve had everything they needed living in an idyllic garden and how they were expelled into an existence of alienation, isolation, and despair.
The task of faith has always been to get back to the garden.
To get back to that place of warmth and security and sense of being constantly loved.
To recover an ideal state of being that has been lost.

Today we celebrate the fact that James never left the garden.
From the idyllic warmth of the womb to the snug warmth of his crib in his nursery and even the high tech ambiance of the PICU, he was enshrouded in love.
Surrounded by soft snuggly animals.
Doted on. Adored. Tossed into the air. Hugged. Fed. Held. Rocked. Serenaded.
A boy who hated naps and loved people
James only knew happiness. James only knew love.
And he is now with God and the Christ who invites all God’s children to be with him
What remains with us is his blessing manifest in the memories, the pictures, and the touch that he has left with us.
We cherish him and will continue to do so.
We embrace and support his parents and will continue to do so.
Buying plots in a quiet cemetery in Denton on Sunday, Matthew and Kara were shown a few spaces and finally chose a block of three by a newly planted tree where we could put a bench.
They bought all three.
James was laid to rest in the middle spot this morning.
And someday his parents will follow.
Once upon a time, they asked each other but never answered "Where would you want to be buried?"
Now the answer is obvious and simple:
"With James."
The touching refrain in the children’s book says:

I’ll love you forever
I'll like you for always.
As long as I'm living
My baby you'll be

But Matthew and Kara, even when you are no longer living then James will be your baby and you will hold him once again.
All of us eventually depart from this mortal existence and go on to meet our maker.
This afternoon I claim for James all of the blessings promised us by our Lord and Savior Jesus Christ
Eternal life and the promise of a blessed family reunion.

I conclude with a poem by e.e. cummins that Kara posted on their blog:

i carry your heart with me (i carry it in my heart)
i am never without it (anywhere i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear no fate (for you are my fate, my sweet)
i want no world (for beautiful you are my world, my true)
and whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart).
Amen.

Day Ten

While previous posts might indicate that James prefers Apple products, as you can see he's equally content to munch on Android/Samsung phones. Here he's taking a bite out of his mother's phone because he can't imagine any better use for it. As usual, he's right. The highest purpose of any phone is chew toy.

Of all our days in the hospital so far, today felt the most uneventful. In many ways, this also made it the most frustrating. It is one thing to accept that you are in the hospital in advance of or recovering from some major procedure, like brain surgery. It's another to play a waiting game because no one really knows why you're there except that your son is very sick, and there are so many possible causes of his current symptoms that you need constant supervision.

James had a relatively uneventful night. Kara and I returned to the couch/bed and found that it was actually worse than we remembered it. At one point I remember waking up and thinking to myself that my entire right side was asleep. I wondered why, and then realized that it was just a byproduct of sleeping on that bed. It was that hard. A night away meant a better night's sleep, and less exhaustion meant worse sleep on the couch/bed. After we arrived yesterday and James received his anti-nausea medicine, he didn't throw up.

We were optimistic that whatever was causing his symptoms had passed- in fact, after getting some fluids and eating a bit James appeared to be in a much better mood. We hoped that whatever made him sick before had passed. At 7:30, he threw up again. We got more medicine and the Doctor on call (our neurosurgeon and many others are taking advantage of the holiday weekend) told us that they wanted James to go 24 hours without throwing up without medicine. Our countdown began at 8:30.

The day went as well as it could. We took James for a walk in his stroller around the hospital. We stopped to look at the trains (Children's has what is easily the most impressive model train set I've ever seen) which James pretty much ignored. We went outside and walked around the garden a little bit. It felt nice to get James out in the fresh air. I remember wondering when the last time he'd actually been outside had been, and wondering when the next time would be. Once chemo starts, he'll be limited to indoors and at home. The summer sun felt nice, the hospital temperature never feels right no matter how much you tinker with the thermostat, and you forget the season when you never go out.

We had several visitors, including Kara's new set of personal shoppers. One of our goals for this week is to take a set of family portraits before James becomes too ill and loses his hair. Some of Kara's friends were kind enough to go and purchase clothes for the event. I think we're going to look quite stylish. Given that earlier that day Kara asked me to change my T-shirt because it had "10 years of stuff on it" and I responded by spilling soy sauce onto my shorts, at least one of us can use the help.

James felt better today. We were particularly encouraged that during the walk he did very well holding his head up and sitting up on his own again. While he'd mastered that skill months ago, along with crawling and other milestones, he's regressed since his surgery. We were pleased that he seems to be regaining some of his strength.

Our countdown began at 8:30 AM. We made it to 8:00 PM. James threw up again. The countdown reset. We feel frustrated that while something is certainly wrong with James, so far no one thinks it's serious enough to do anything major about. Part of the problem is that because of everything James has been through, there are just so many potential causes it's hard to nail just one down. Residual tumor. Surgery in and around the cerebellum. Blood in his cerebrospinal fluid. Fluid accumulating on top of his brain. Six rounds of general anesthesia. Any, all, or some of these problems would could be the cause. And so we wait.

We're just watching, and if it were up to us, we'd do that at home where we can give him the nausea medicine just as well as they can here. At the same time, we don't want to leave when the kind of complications he could be suffering might worsen and become serious. So here we are.

The one week we thought we had before James' life turned upside down is slipping away one hospital day at a time. Tomorrow is Sunday. We'd wanted to dress James in one of his fourth of July outfits while we still could and take him out. Monday is the Fourth. Our neighborhood has a parade we wanted to take him to. Every day spent hear means one less experience outside of the hospital.

James himself appears to be getting increasingly angry at the hospital. He screams at nurses. He won't let them touch his hands- he's afraid they'll stick him again. He closes his eyes tight at all of us when things go wrong, as if when he opens them again we'll go away. I don't blame him. One of the most frustrating things is that we can't tell him why. We can't explain to him what's going on, or comfort him with reasons. He just knows he's sick, and we watch while people hurt him.

Despite everything though, James continues to be a source of joy to us. One thing that has improved since his surgery is his ability to make noises at us. He's stringing together letters and "words" like he never did before. I think we've heard "ma-ma" and "da-da" several times, though it's hard to tell if he means anything by it other than noise. Still, it's good to see him developing in some ways- and when we can get him to laugh and play, he's such a wonderful baby. We're hoping as soon as we get this one last complication taken care of, James will get back to his normal self again. Our prayer is that no matter what the future holds, nothing about James' self will change. We pray that he will always be at heart the happy, playful boy he always has been. I know that even now his natural disposition helps him weather this experience as well as can be expected. We pray that his treatment will involve a minimal amount of radiation- radiation can damage his mental capacity. We pray above all for healing.

I've gone home for the evening- but only after securing a concession from Kara that if we're in the hospital tomorrow, she's spending the night at home. My original proposal that she spent the night at home was rejected- Kara won on the grounds that her breasts produce milk and mine do not. An effective argument, but I count getting her to agree to take tomorrow off as a victory. We're both hoping we don't have to do any more negotiating on nights in the hospital however because James will be able to come home.

As always, thank you for your thoughts and prayers. The comments, cards, and support we receive daily mean the world to us.