James would have been 10 months old yesterday. I miss him so much. I literally woke up crying yesterday. I just want my baby back.
I know a ton of people who had babies within 2 weeks on either side of James's birthdate. I can't bear to look at any of their pictures. I can't even fathom James doing the things that their children are doing now. Some are talking. Some are walking. Some are eating real solid food.
I really just want my baby back. I started classes last night, and all I could think about was that I wanted to be home with my sweet boy instead of sitting in that lecture hall. I really wish I could change the past.
The last 2 weeks I have barely been able to stop crying. I guess it's finally hitting me now. For some reason, it seems that it is all getting harder and harder instead of easier. Maybe because the phone calls are less, the cards are fewer and the house is achingly quiet these days. I miss James. I miss him so much. I guess nothing is ever going to change that or take that away.
I guess this is what the new "normal" is.
Tuesday, August 30, 2011
Sunday, August 28, 2011
Genetic Testing Results
This post is really for those of you affected by rhabdoid tumors that find this blog. The rest of you might not be interested in the medical part of it- and that's fine! I'm going to try to explain the results as I understood them (and hopefully the genetics class that I am taking this semester will help me more in the future!)
Rhabdoid tumors (like most tumors) are genetically related. That means that within most tumors, the cell make up is different than those of normal cells. The difference between tumor cells and normal cells- or in this case rhabdoid cells and brain cells is that the rhabdoid tumor cells keep reproducing and don't stop. Almost all cells reproduce- which is good usually. Kind of like when you cut your self, and the cells around the cut reproduce in order to clot and then heal the area. But those cells stop reproducing when the infected area is healed. Tumor cells, as a general rule, keep reproducing until they 1) run out of space or 2) are killed.
So onto the genetics part. Rhabdoid tumor cells are missing a tumor suppressor gene within the cell make up. (Specifically it's the chromosome 22 hSNF5/INI1 gene that is deleted. Not important unless you are into this kind of thing!) SO basically ONE gene on ONE chromosome of ONE cell causes this tumor.
The question for the genetic testing boiled down to whether James was missing the tumor suppressor (INI1) in every single cell in his body, or whether the tumor suppressor was only missing in the tumor cells. And if the INI1 deletion was detected in every cell (which they test in his blood and spinal fluid), then was it because he inherited this deletion from either Matthew or I?
There were 3 options for the genetic testing that we were prepared for. I hope I explain them correctly (and once again forgive me because I'm trying to write them in the ways that I understand it!)
First Option
The INI1 suppressor was only absent in the tumor cells. We were told that this was only about 2% likely. The children that normally have this happen have rhabdoid tumors when they are older than 1, and they have the highest survival rates. Since James' tumor came back so quickly after the resection, and because he was 7 and a half months at the time of his diagnosis, this seemed unlikely.
Second Option
The INI1 suppressor is absent in all of James' cells. Somehow this happened at conception and for some reason the sequence of proteins, etc. was interrupted causing this complete genetic mutation.
Third Option
Either Matthew or I are missing the INI1 suppressor in our genetic make up and passed it along to James. If option 2 was true, then the lab will test the samples that Matthew and I submitted to see if either of us is missing the gene. If one of us is found to be missing INI1, then any future children we would have would have a 50% chance of inheriting this suppressor and most likely would develop a rhabdoid tumor as well.
We were prepared for option 2. We knew option 3 was a possibility, albeit small. All week I had been expecting the results and by the end of the week I had convinced myself that I had passed along the gene deletion to James and I had caused him to get the tumor. (It was a really bad week which I will write about later).
So Friday night Children's called to tell me the news. Sweet Megan, who is a geneticist, stayed late and tracked down the director to the outside lab to get the results (we had been having delays all week). She knew how nervous I was about the results, and I am just so thankful that she stayed late (On a FRIDAY) to find out.
James' tumor results came back NORMAL. It was option 1. There was one cell is in brain that mutated and caused this terrible, awful tumor. To say I was shocked would be an understatement. James was born absolutely perfect.
I thought that this was the option I wanted- and its true that it is good news. I don't know how I would have lived with the guilt if I had passed it on to him. Or if it had happened at conception I would have come up with a way to blame myself.
But now they have no clue why this one cell in his brain would mutate and do this. No earthly idea. And in some ways that is harder because there is no cause. It's just a fluke.
Flukes are hard- but it would be worse if I had given it to him. So I am thankful for that! I'm really interested in genetics now, maybe I will find out why cells do this!
Rhabdoid tumors (like most tumors) are genetically related. That means that within most tumors, the cell make up is different than those of normal cells. The difference between tumor cells and normal cells- or in this case rhabdoid cells and brain cells is that the rhabdoid tumor cells keep reproducing and don't stop. Almost all cells reproduce- which is good usually. Kind of like when you cut your self, and the cells around the cut reproduce in order to clot and then heal the area. But those cells stop reproducing when the infected area is healed. Tumor cells, as a general rule, keep reproducing until they 1) run out of space or 2) are killed.
So onto the genetics part. Rhabdoid tumor cells are missing a tumor suppressor gene within the cell make up. (Specifically it's the chromosome 22 hSNF5/INI1 gene that is deleted. Not important unless you are into this kind of thing!) SO basically ONE gene on ONE chromosome of ONE cell causes this tumor.
The question for the genetic testing boiled down to whether James was missing the tumor suppressor (INI1) in every single cell in his body, or whether the tumor suppressor was only missing in the tumor cells. And if the INI1 deletion was detected in every cell (which they test in his blood and spinal fluid), then was it because he inherited this deletion from either Matthew or I?
There were 3 options for the genetic testing that we were prepared for. I hope I explain them correctly (and once again forgive me because I'm trying to write them in the ways that I understand it!)
First Option
The INI1 suppressor was only absent in the tumor cells. We were told that this was only about 2% likely. The children that normally have this happen have rhabdoid tumors when they are older than 1, and they have the highest survival rates. Since James' tumor came back so quickly after the resection, and because he was 7 and a half months at the time of his diagnosis, this seemed unlikely.
Second Option
The INI1 suppressor is absent in all of James' cells. Somehow this happened at conception and for some reason the sequence of proteins, etc. was interrupted causing this complete genetic mutation.
Third Option
Either Matthew or I are missing the INI1 suppressor in our genetic make up and passed it along to James. If option 2 was true, then the lab will test the samples that Matthew and I submitted to see if either of us is missing the gene. If one of us is found to be missing INI1, then any future children we would have would have a 50% chance of inheriting this suppressor and most likely would develop a rhabdoid tumor as well.
We were prepared for option 2. We knew option 3 was a possibility, albeit small. All week I had been expecting the results and by the end of the week I had convinced myself that I had passed along the gene deletion to James and I had caused him to get the tumor. (It was a really bad week which I will write about later).
So Friday night Children's called to tell me the news. Sweet Megan, who is a geneticist, stayed late and tracked down the director to the outside lab to get the results (we had been having delays all week). She knew how nervous I was about the results, and I am just so thankful that she stayed late (On a FRIDAY) to find out.
James' tumor results came back NORMAL. It was option 1. There was one cell is in brain that mutated and caused this terrible, awful tumor. To say I was shocked would be an understatement. James was born absolutely perfect.
I thought that this was the option I wanted- and its true that it is good news. I don't know how I would have lived with the guilt if I had passed it on to him. Or if it had happened at conception I would have come up with a way to blame myself.
But now they have no clue why this one cell in his brain would mutate and do this. No earthly idea. And in some ways that is harder because there is no cause. It's just a fluke.
Flukes are hard- but it would be worse if I had given it to him. So I am thankful for that! I'm really interested in genetics now, maybe I will find out why cells do this!
James Crawling
This is one of my favorite videos of James. It's from a little over a month before he died. I titled the post "crawling" but James' crawling was more of an inchworm kind of experience. If he'd been more patient he would have waited to start moving until he'd mastered the art of getting his arms and legs under him. Developmentally, that's the ideal scenario. He would have waited until he was strong enough to keep his stomach off the ground. James was never patient.
He liked to explore. First he crawled off the rug to check in on his puppies at the door. When his puppies wouldn't play (they were always disappointed James couldn't let them in) back to people. He always came back to people because they were the most reliably entertaining things around.
He liked to explore. First he crawled off the rug to check in on his puppies at the door. When his puppies wouldn't play (they were always disappointed James couldn't let them in) back to people. He always came back to people because they were the most reliably entertaining things around.
Friday, August 26, 2011
Graveside
I decided to visit James today and check in. I visit often. I made the now familiar drive to Denton and took a book. I spent a few hours there. The spray we put on his casket wilted long ago, beaten down and slowly succumbing totally to the oppressive summer heat. Fresh flowers have a very short half life. I wandered the graves around his, wondering what neighbors we'd made. A boy caddy corner to James died at 13 last year. Today would have been his 14th birthday. Visitors trickled in throughout the evening, complete with Happy Birthday Balloons fastened to the headstone, fluttering in the wind long after the visitors departed. I wonder what a year will bring.
They dug a grave across from James- a service in the morning. Across the street, another baby boy, four months old. Another three person plot, parents on either side. Yet another baby resides a few rows over, a five month old. Their ages remind me how grateful I am for the eight we had. You can identify the children's graves quickly. More clutter- bunny rabbits and animals littering the base of the headstone, rattles and other plastic toys slowly fading in the sun. I spent a little time with each of them, wondering who besides me would visit my boy on summer days in the future, who would wonder at the toys I might bring him. Older teenagers and early twenty-somethings form the next cluster of graves in terms of age, offensive lineman and others with inscriptions alluding to premature deaths and extracurricular activities. Car wrecks perhaps, one cannot tell for sure. No one puts how they died on their headstone. It doesn't matter enough.
I curled up with a book and read some, the time wasted away quicker than I expected, quiet and peaceful as I'd hoped it would be when we first visited. Two trains, a few groundskeepers, and one insane jogger, who must have made long laps around the place for more than an hour. She was rail-thin already, I half expected her to keel over on several occasions. Perhaps she just thought it would be more convenient here.
I am not quite sure why I come so often. Kara is right in that it brings some people more comfort than others. Visiting James' grave is not visiting James. James is gone, he was gone well before he ever made his way to Denton. All that remains is his body, my son left at this world at 3:50 P.M. on July 16. He's not waiting for me in Denton. And yet I go. I go perhaps because it is the only place left in the world dedicated solely to James. He still has his room of course, his things remain untouched. But that's a place dedicated to his life- this is the only place commemorating his loss. Sometimes, I need to spend some time with that. It still seems stunningly unreal, an anomaly that I cannot believe. So I go to his grave to mourn him, because I need convincing that he's gone, that he needs mourning. I linger in the still, quiet space that he rests in and try to find a way to acknowledge that he's actually there, that my son has joined all of those other graves I wrote of before, that we buried him. In many ways it's not for him that I go, indeed, James doesn't need me or anyone anymore, he's undoubtedly found much more exciting people to play with. I'm going because I need to deal with him being gone, and it helps to talk to him about that there. I am not sure if that is the correct answer or the just the right answer for right now. I expect it to change. In a few years, I'm sure I'll agree with Kara and find it sad, which is unquestionably is. I'll go less and know the joggers less well. Right now, I'm just glad I have somewhere to go. As with so many other things, I'll figure out the rest later
They dug a grave across from James- a service in the morning. Across the street, another baby boy, four months old. Another three person plot, parents on either side. Yet another baby resides a few rows over, a five month old. Their ages remind me how grateful I am for the eight we had. You can identify the children's graves quickly. More clutter- bunny rabbits and animals littering the base of the headstone, rattles and other plastic toys slowly fading in the sun. I spent a little time with each of them, wondering who besides me would visit my boy on summer days in the future, who would wonder at the toys I might bring him. Older teenagers and early twenty-somethings form the next cluster of graves in terms of age, offensive lineman and others with inscriptions alluding to premature deaths and extracurricular activities. Car wrecks perhaps, one cannot tell for sure. No one puts how they died on their headstone. It doesn't matter enough.
I curled up with a book and read some, the time wasted away quicker than I expected, quiet and peaceful as I'd hoped it would be when we first visited. Two trains, a few groundskeepers, and one insane jogger, who must have made long laps around the place for more than an hour. She was rail-thin already, I half expected her to keel over on several occasions. Perhaps she just thought it would be more convenient here.
I am not quite sure why I come so often. Kara is right in that it brings some people more comfort than others. Visiting James' grave is not visiting James. James is gone, he was gone well before he ever made his way to Denton. All that remains is his body, my son left at this world at 3:50 P.M. on July 16. He's not waiting for me in Denton. And yet I go. I go perhaps because it is the only place left in the world dedicated solely to James. He still has his room of course, his things remain untouched. But that's a place dedicated to his life- this is the only place commemorating his loss. Sometimes, I need to spend some time with that. It still seems stunningly unreal, an anomaly that I cannot believe. So I go to his grave to mourn him, because I need convincing that he's gone, that he needs mourning. I linger in the still, quiet space that he rests in and try to find a way to acknowledge that he's actually there, that my son has joined all of those other graves I wrote of before, that we buried him. In many ways it's not for him that I go, indeed, James doesn't need me or anyone anymore, he's undoubtedly found much more exciting people to play with. I'm going because I need to deal with him being gone, and it helps to talk to him about that there. I am not sure if that is the correct answer or the just the right answer for right now. I expect it to change. In a few years, I'm sure I'll agree with Kara and find it sad, which is unquestionably is. I'll go less and know the joggers less well. Right now, I'm just glad I have somewhere to go. As with so many other things, I'll figure out the rest later
Monday, August 22, 2011
Giraffe Contest Deadline
Here is James enjoying his giraffe blanket, one of his many giraffe accessories. In addition to being very comfortable, this blanket had the added benefit of being machine washable, an essential quality for any James accessory.
Today was the last day for submissions to the Dallas Zoo for their Giraffe naming contest. Thank all of you so much for your submissions. We will not know the results until September, but regardless of the outcome it has been deeply humbling to see the response that this campaign has generated. It's touching to know that so many people thought of James and his story. Besides, I can't think of a better name than Jamie for a giraffe. Yes, I am extremely biased.
Throughout all of this, it has been a great comfort to know that James has reached so many people and touched so many lives. Although we'd gladly trade all of it in a heartbeat for a moment with him, it is gratifying to know that his memory lives on and is a source of comfort to others. James never did sad very well, and it is appropriate that his legacy be a joyful one.
Sunday, August 21, 2011
Losing the Future
When a parent dies, you lose your past; when a child dies, you lose your future.
~Anonymous
I saw this quote a few days ago on a child bereavement website. Maybe this sums up how I feel sometimes. I guess a lot of times I feel like I have lost my future. All of the things that I wanted to experience with James that will never be- like first steps, first words, coloring pictures. First day of school, first dance, baseball. Drivers license, graduations, wedding. Grandchildren. Tantrums. Scraped knees. Broken arms. Asserting independence. Attitude. As silly as it is, I wonder what his tantrums would have been like. I am sure he would have had them. And I am sure that they would have been exhausting! But isn't that part of the fun looking back as a parent? That you can tell those stories around the table when your kids are older and laugh, even though at the time the tantrums about did you in?
Would James have given me sass when he was angry? Or would it have been a quiet anger summed up with a slammed door? Or maybe he would have learned to control his temper and surprised me by being completely cool, collected and articulate when upset. That would be a stretch given his parents, but I guess it could have happened. There were so many things left to learn about him. I hate that I will never know.
So now James's future becomes what I make of it in some ways. His legacy is completely in Matthew and I's hands. I'm starting classes next week to finish my medical school pre requisites that I started as a freshman at Baylor. I began pre-med, and now, 10 years later, I'm going to try that route again.
In order not to lose the future, for me, I have to make some sort of meaning out of all of this. I learned a lot during our time in the hospital and I really feel like I need to be able to help other people even though I couldn't save James.
Maybe one day I'll be able to find a way to cure this stupid tumor. Today I am just really angry at it and wish that it didn't exist! I think that the timing of the beginning of the school year is hard. I'm thinking about the First days of school that James will never have. And for some reason that is hitting me harder than I thought it would.
Tomorrow is another day, and hopefully it will be better. I hope that those of you starting school tomorrow follow into a routine that becomes, well, a routine. And a big thank you to all the amazing teachers out there! You are selfless, patient individuals who sacrifice so much in order to provide excellent education. Also, thank you to all the higher education administrators that work so incredibly hard to facilitate personal and educational growth to young adults that will shape the future of our country. You are all in my prayers this week.
Tomorrow is another day, and hopefully it will be better. I hope that those of you starting school tomorrow follow into a routine that becomes, well, a routine. And a big thank you to all the amazing teachers out there! You are selfless, patient individuals who sacrifice so much in order to provide excellent education. Also, thank you to all the higher education administrators that work so incredibly hard to facilitate personal and educational growth to young adults that will shape the future of our country. You are all in my prayers this week.
Saturday, August 20, 2011
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.
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.
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