Momentum

This was the background picture on my phone for the longest time. It's James with his sunglasses on before we went to the Saint Patrick's Day Parade last year in his first outfit of the day. I always thought he looked really cool.

Somewhere scattered in the cobwebs of my brain remain the concepts of momentum and inertia. If my faulty High-School Physics (the high point of my physics education) recollection serves me right, together the two have to do with the energy needed to affect movement. Inertia is roughly how much energy you need to get something going, while momentum is the force it carries as it goes. It's quite possible I'm wrong. Math and science, while interesting, were never "core competencies" of mine. Lazy child that I was, I always migrated towards the subjects that came easiest to me, English, History, and all things verbal. I can still remember the disappointment I felt when we graduated to junior high, when reading, and thus another easy grade, lost its place on the report card. Pre-Algebra proved a poor substitute.

Since James died, I've felt like what I've needed to do was gain momentum. In the first few days after he died we were going non-stop, planning the funeral, picking out a grave, attending to all the little thing that needed to happen, too terrified to pause and reflect upon what had happened. Afterwards, in the first few weeks that followed time and life morphed into some indiscriminate blur, the pain too raw and too tense for processing or understanding. Everything dissolved once that initial momentum faded away, when family and friends left for the lives they put on pause to get us through those first few days. Sometimes I think what happened to us is closer to hitting the stop button than the pause button, the film ready to be ejected, not resumed.

The act of showering became an achievement, one I allowed myself only so that I could put on clothes and drive out to my son's grave. I remember closing my eyes and thinking to myself "You have to get up. You can't do this all day. Just get up and drive." I'm sure I did more than that. I know I brought books with me. I finished several. The plots and titles are vague, as if I didn't keep them long enough in my short term memory to form any lasting impressions of the characters or the plot. The initial momentum of those first few days faded into an almost total inertia, drifting along responding only to those problems that demanded immediate attention.

Since then, things gradually improved, but maintaining momentum is not easy. The old physics concepts of equal force and what not evaporate. Small things disrupt the flow, derail the day. Leaves gathering in his swing outside, left long enough that they've begun to crumble, brown and dead. There's no reason to clean them off anymore as we once did, careful to make sure James wouldn't get dirty. Cleaning out the trunk of my car (years overdue) I discover packages sent home with us by the doctors we interviewed when Kara was pregnant, stockpiles of formula and guides that I dump directly in trash. E-mails from buy-buy baby in every inbox, the product of registering each address for 20% coupons to double up on big purchases. Like the rocker, the same one he died in. I researched rocker brands and styles to make sure we got a good deal. I've almost stopped all the e-mails now, clicking through pages of distractions to get off the lists. Sometimes these little things leap out at me and the inertia slides right back in, and I'm useless for the rest of the day, playing that image over and over again in repeat. The finality of his death comes back to me and I lose myself in it.

There have been many times that I wished for this process to be linear, for benchmarks, some kind of metric to measure my progress in. Some kind of guide that tells you how you should feel 175 days out from your son dying- Day 199 in the old count I used to keep here. Day 1 was the day James got sick. On Monday, it will be 180 since he died. Six months. Half a year, two months shy of James' entire lifetime. The laws of thermodynamics don't work though- not to measure momentum, inertia, or any of the starting and stopping in between. It's not terribly neat. Nothing about this is. The hardest part has been to understand that maybe that's not a bad thing. Maybe that's just the way it is, and it doesn't matter how stuck in inertia you get our how much momentum you build, as long as you find your way. I've decided to stop worrying about how.

Thank all of you for your thoughts and prayers.

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.

Missing James

So I know it's been a long time since I have posted anything. For some reason, it just doesn't feel right to spill all my feelings out for everyone to read. Part of it is because at any given moment, I could have polar opposite feelings. Hopefully that is normal- but I guess there is nothing "normal" about burying your 8 month old son.

We spent alot of time at Baylor talking about strengths. My sophomore year, Baylor started using Strengthsquest to assess and develop students' strengths. Marcus Buckingham, who is a former researcher at Gallup, and currently is probably the most well-known strengths-based leadership consultant for companies, organizations and education. He has written several books about strengths which I would highly encourage you to read if you get a chance. Strengths-based leadership is a passion of mine, and I absolutely love utilizing strengths to assist students in defining their calling and ensuring success. Ok long explanation for what I am about to say. My strengths, according to Strengthsquest, are Positivity, Empathy, WOO (winning others over), Belief and Maximizer.

Positivity has always been my number one strength. No matter what kind of personality test I take, positivity, or something similarly related, always ends up on top. So for me, having a negative response to this situation is strange. Most of the time I take the positive route- James is with Jesus. Which he is. I have absolutely no doubt about that. But there are times that I am overwhelmed by the thoughts that I am left alone without him.

I read the headline of an article the other day- "Motherhood is a calling". I didn't read the actual article. I just couldn't go there. Because what do you do when you have felt your whole life that Motherhood is your calling, and then your baby is gone? Alot of days I feel like this. If you ask anyone who knows me- even has met me once or twice- they will probably tell you that I was meant to be a Mommy.

When I was about 3, I was watching Dumbo. I remember sitting in front of the TV just bawling. It was the scene where Dumbo's mother is locked behind the bars of her cage, and Dumbo desperately wants his Mommy. She gently pulls her trunk through the bars, scoops him up, and rocks him to the song "Baby Mine". (Allison Krauss has a really beautiful version also if you want to listen!). I remember thinking that when I had a baby, I wouldn't be able to bear being away from him (or her).

And so now, over 3 weeks later, I still can't bear being away from him. I don't know how to do it. I feel like I don't even know how my life if supposed to work. How can my life possibly make sense without him in it?

Sometimes I am just desperate for someone to ask me about him. I was at Target today, and I was just hoping that my usual check out lady was there. Then maybe she would ask about him. And maybe I could talk to her about my sweet baby. I love it when people tell me about him. Whether it be stories that they have about him, or maybe they saw something when I wasn't looking. Or other times it's the little things that remind them of him now. Because for me, I just don't want him to be forgotten. I don't want people to pretend he didn't exist.

Just because that's what I want right now, doesn't mean that everyone who has lost a child wants this. I can't pretend to know what other people know. And I know there is no "one-size fits all" grief. But I am so grateful for every sign that someone is thinking of my baby boy. Because I think about him every second, every minute, every hour of every day.

My brother and I took a little trip to San Diego this week. Which, by the way, if you have never been is absolutely beautiful. I was feeling down one afternoon. We had just checked in to our hotel in La Jolla, and my brother suggested that we take a walk to the beach. We turned out of the hotel, and directly in our path was the St. James Episcopal Church. In the window were several giraffes. What are the odds?! Giraffes in the window of a church called St. James. I had to laugh and was thankful for God's many blessings in my life. Some of them large signs, like this one, and other small ones that don't go unnoticed.

I'm going to try to start writing again- hopefully my writings won't disappoint!

Day Twenty Four

I am not ok. I don't even know what ok looks like anymore. I don't remember what that even means. I'm just here. The world keeps moving but I do not. I keep breathing but everything is wrong. Everything is lacking. I keep expecting him to roll back into view, or crawl out from around the cabinet. The house seems too empty, too still.

I know he's better now. I know he finally beat the tumor, finally found peace. I am thankful it did not last long, that he did not have to endure months of treatment doomed to failure, that his illness struck him so quickly it took him before it could dampen his spirit. That he died at peace and in comfort. I am glad he died in our arms, surrounded by our love. I am glad I had the chance to tell him that over and over and over again before the end. We told him it was ok to go. I believe it was ok for him to go. I believe he heard us. I believe he knew how completely he was loved. I am not worried about James. James is fine, fine in a way I've never been. My little boy doesn't need grief, he doesn't need anything. He had all the love he could get.

So James is fine but we are not. We are left here with empty arms and damaged hearts, shadows of the people we were a month ago. There is much to take comfort in, and I do and will take comfort in many things- the profound impact James had on so many people among them. His happiness. How glad I am we were at home. But they cannot replace the part of my soul the rests with him. They cannot smile, laugh, and play peek a boo. They cannot be James.

There is much to do and we will do it. But for now it all seems impossible, even the smallest tasks feel that way. Everything is colored all wrong, everything is off center. The axis around which it all revolves is broken, ruined. I am trying, trying to keep moving. I suppose I will find a way. James did.

Thank all of you for everything, please keep us in your thoughts and prayers. Many of you have expressed a desire to give to charity on James' behalf, a desire we share. We will distribute information as soon as possible.

Day Four

This is James with his "menagerie" as I like to call it. His ever growing collection of soft, plush, and silky giraffes and monkeys- giraffes are growing into a theme of James'. He now has a giraffe blanket, a giraffe pacifier, his sophie the giraffe, a plush monkey, and his monkey lovey. No member of the menagerie is superfluous, and James is an equal opportunity chewer, thrower, and cuddler. He has the time to get to everyone, no one is left out. Ever since he's been little we've called him Jamesie the giraffe. Kara sings a little song with it. It's very cute. He has been in fine spirits today.

Today was our last day or relative calm. Tomorrow the second phase of our journey begins and James will have his first major battle with his tumor. We are confident in the doctors and the support staff here, and we feel good about our plan. While we're certainly nervous, anxious, and often overwhelmed, we feel like we've mapped our a plan and we're following it.

We had a difficult night. Part of the problem I suspect is that the cumulative effects of sleep deprivation are beginning to wear on Kara and I. The sleep we do get is restless, often interrupted, and rarely peaceful. Here's a picture of the "bed" that Kara and I have shared for the last four nights.

Ok so the bed is apparently at the top of the post. Picture it here. I'm not pausing to take the blogger tutorial.

You may have guessed, but the bed is not particularly comfortable. Last night we discovered that if you lift up the "cushions" to reveal some storage space you actually add approximately two inches to the total width of the bed. The difference was noticeable. In any case, although the floor is much less invasive than the PICU, the interruptions still almost always wake James up, which means it takes an hour or more to put him down. Last night, his heart rate dropped quite low in the middle of the night, prompting an EKG. The EKG showed nothing, so that's one less problem we have to worry about. The EKG set us back about 2 hours around 3:30. The staff is great, but no one likes waking up at 3:30 to get wires taped to them.

James is handling everything wonderfully, far better than we ever could have hoped. One gratifying thing today has been that his appetite returned in force. As he hasn't eaten in over a week, he really seems to be zeroing in on food, especially solids. This is a bit funny as James typically hates to eat and actively fights off spoons. Now he's excited and gets upset when you walk the food away from him. The downside of this is that once today James gorged himself and threw up- he was asleep and got woken up to check some vitals, and the combination of all that stimulus proved to be a little too much for him.

Kara and I did take the opportunity today to leave the hospital for a few hours. It was strange in many ways. Having been here so long and after everything life before seems distant, out of focus. We were surprised by how hot it was, even though logically we know that it's June in Dallas. We'd been dressing in jeans and sweatshirts. The hospital is cold. Driving was weird, it felt too fast. We went to lunch at Taco Diner. The food was good, but to me at least the atmosphere was weird. You feel strangely isolated, everyone is buzzing, fresh from church or somewhere else. The weekend is in full stride. I ordered queso when they came for drinks and got the check when they brought the food. It's hard to waste time now. We saw someone we went to college with who was praying for James. It was good to know that even in somewhere completely random like that, someone was thinking of and praying for James. We went home and took a nap, on a bed that felt like a pillow. I am glad we got out. We needed it. James needs us at our best, and we just can't do that if we're always here.

I know that we can't do this forever, both of us staying here all the time, but that's an issue we'll address after. We'll work out a schedule, we'll do something. Right now we both just want to be here, to take care of our boy until we know what his future looks like. I feel like every day we have less and less unknowns, our course becomes clearer.

As Kara discussed, we're now hoping that James' tumor is a blastoma, a less aggressive tumor and an easier variety to treat. Our doctor did the consent form for James' surgery- I know it's silly, but the fact that "death" was not listed as a complication somehow comforted me. The nurse offered brochures on each type of tumor James may have today and we turned them down. As we discussed earlier, there's no sense in worrying about what we can't control. Once we know which it is, we'll worry about that. Until then, worrying about both will not be helpful. This is strange for Kara and I- we're huge control freaks, micromanagers. Classic oldest children. 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. Tomorrow will be the most difficult day of my life, but I am choosing to believe that it will also be the first day in my son's journey to beat his tumor, and to live the amazing life that I know he deserves. I look forward to one day telling him about all of this one day when he's older to let him know just how special he is, and how blessed I am to call him my son.

As always, thank all of you for your continued love and support. We could not do all of this without your thoughts and your prayers. We are grateful for everyone who has expressed such love for our son and for us.

Day One

From Matthew:

Before I forget all of this I want to write it down. The last 48 hours have been a whirlwind. Wednesday evening we took our son to the hospital, to deal with what we assumed was some kind of superbug.

Tonight, our son is in the PICU at Texas Children's. Today he had brain surgery, the second neurosurgical procedure he has had in as many days. Kara and I have slept less than five hours in the last the past two days, pockets of one hour naps sprinkled through the night and the day. Things still feel unreal, like I'm dreaming and someone, sometime, is going to wake me up.

So I wanted to write down the timeline, to keep things straight.

Wednesday:
6:00 pm: Kara finishes at the peditrician's. James' sickness is "unusual" so she's sending us to Children's for observation. No one is worried.
7:00: I arrive at Children's after stopping by the House to pick up some things. I go to the room but no one is there- they'd assigned one and put it in the system before James and Kara got there, I go to admitting and of course just miss them headed in.
7:30 We meet up in the room.
8:00 James is seen by the intern. The intern notes that James appears to have a stiff neck. We are surprised, and worried he may have meningitis. The resident mentions hydrocephalus as a possibility. We're upset, but it's a long way away. A plan is made to send him for a CT scan.
8:20 We go and get the CT. We're escorted by two paramedics who basically walk after us since I'm carrying James. Kara jokes that they should be called "ambassadors" of the hospital. They say we made their day. Everyone is laughing.
8:45: James gets his IV. The IV team at children's is efficient and very nice, we're pleased, as he had a difficult time getting an IV a few days before at Medical City. James still has that IV.
9:15: The resident comes in and informs us that James has hydrocephalus. We are very concerned, ask a lot of questions. The idea of a shunt in his head forever seems daunting.
9:45 We meet with the neurological PA who talks to us about his scan. Compared to a scan he had 2 month ago, this one is not good.
10:15: The neuro PA comes back to inform us that James' scan shows a "mass" of cells, which may be nothing, and may be a tumor. We are devastated, but we pray for mere hydrocephalus. Superbugs are a welcome, even preferred cause of anything.
10:45: Per the neuro PAs instructions we move to the neurological ward.
11:15: Orientation finishes in neuro. The PA comes back to talk to us about hydrocephalus and to check James out. His heart rate stops dropping, below preferred levels. The PA orders us to be moved to ICU.
11:35: The PA talks to us about possibly putting in an EVD (external ventricular drain) as a temporary measure to take care of James' hydrocephalus, mentions we may have to of conditions worsen.

Thursday

AM

12:10: We arrive in the PICU, our new home. We meet our RN, who has been with us since and is fantastic.
12-9: We enter into a holding pattern in the PICU of uncertainty- waiting to see if James will become critical enough to justify the EVD. James is fussy, and we now know, in a lot of pain. We never know exactly when anything is happening as we're holding until the morning. We know that the results of an MRi will be critical to determining our future course. We pray. We hold James' as it's the only way he will stop crying. There's a need to get blood and he won't bleed enough. We see our friends from the IV team again who put in another IV. They wonder how on earth we went from general admission to the PICU in 4 hours.
9:00: We see our neurosurgeon and his team. The explain that the plan is to put in the EVD and then proceed with the MRI. The EVD will buy time to consider the next steps. I comment on his suit, which is a very expensive and very aggressive union of pinstripe/plaid. It looks like fun.
10:00: James gets a breathing tube and the EVD procedure begins. I want to stay to watch. it is hard to imagine leaving him, even though I know I am powerless. I am terrified something will happen while we're gone. They kick me out. I'm thankful.
11:30: We return. The EVD procedure went well and James' pressure is improving. We are thankful and wait for the MRI.
12:15: James goes to the MRI. The staff is wonderful and he seems well. He has to go under for the MRI in order to keep him still.
1:30: After a hurried (literally- we ran from the cafeteria back to the room) lunch, we receive a call that the MRI team has ordered additional pictures of James' spine. We are not encouraged, and afraid of why they need information.
3:00 James returns from the MRI.
4:00 Our neurosurgeon returns. The film he puts on the screen is entitled "8 month old with hydrocephalus and brain tumor" Kara immediately asks about the tumor. I know I asked questions but I remember very little of the next few minutes. I couldn't believe it. I remember sitting at James' bed and holding his hand, hoping we'd wake up. The plan is to treat the ydrocephalus with a ventriculostomy and get a biopsy.
5:00: Kara, who is infinitely more wise than I, institutes a no-crying, all positive attitude in James' room. It is ok to cry. But outside. James is extubated, and seems more himself. He is visibly more alert with the pressure relieved.
6:00: I lock myself in the bathroom and cry uncontrollably for ten minutes straight, curled in a ball in the corner. I wonder when we wake up. I curse god, myself, medicine.
8:00: James starts to smile and play. It is a HUGE relief to see him so happy. He is such a joyful boy, he always has been.
9:00-12: James takes a well deserved nap before remembering that he is awake, and for the first time in who knows how long, not in agonizing pain.

AM
12:00-8:00 With limited interruption, James plays. Even though we are exhausted, it is amazing to see him so happy. He's grabbing at his lines, very disruptive. We don't care. We're relieved to have our wiggeworm back. The nurse says that EVD patients don't often behave that way. As always, James is a trendsetter.
8:00: We hear that the surgery will be at 9.
9:50: Anesthesiology arrives, a sprightly grandmother who likes to share, which is nice.
10:10: The surgery is waiting on consent.
10:50: Our neurourgeon arrives to provide consent forms. We listen. They take James back and we follow as long we can. We kiss him goodbye and save our tears for when he gets rolled away.
11-2: We wait on the results of the surgery. The OR calls several times and lets us know what is going on. The surgery appears to be proceeding smoothly.
2:30: James returns to us in the PICU, tired and a bit groggy but otherwise well. His cranial pressure is much lower. Our neurosurgeon provides his report- the surgery went well, the ventriculostomy was an apparent success and they obtained a biopsy. The biopsy confirms that the tumor is not one which can be treated with merely chemo or radiation and will require a surgery to remove it over the weekend. It is a blue-cell tumor- either a raboid (sp) or a blastoma or some sort. We expected this, so much of the shock of yesterday is worn off. We try to have faith in our plan, god, and our little boy.

We are exhausted. Starbucks is a constant companion. There's one in the building. I cannot express in words how grateful we are for the loving and faithful support of everyone. I never knew how many friends we had until now. James is loved and blessed in more ways than I can imagine. Thank all of you, always.