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.
Friday, August 19, 2011
Fotolanthropy
As most of you know, Katie Norris blessed us immensely when she came all the way to Children's and took the most beautiful photographs I have ever seen in my life.
Seriously. The most beautiful photos. Sometimes I just stare at them.
Katie launched Fotolanthropy the morning that I (through tears) asked her to come and take pictures of sweet James before he lost his hair. I really wanted pictures of his beautiful hair, and I was so sad he was going to lose it during chemo. (Remember at this time I truly thought that James was going to beat the tumor and that we would be doing 52 weeks of chemotherapy.)
Katie and her team of assistant photographer Brooke and videographer Daniel Troupe gave us the second most precious gift I have ever received (after the gift of James of course). Little did either of us know the impact that these photos and her work would have.
Katie tells the story of how she became involved with our family on her Fotolanthropy blog. I loved being able to read how James impacted her world. It is truly a "God thing" how we got together, and I am so grateful that I got to know her.
Katie donated her entire session fee as well as gave us 2 HUGE prints of sweet James and a HUGE array of beautifully printed photos. She and Brooke also created an amazing guest book for people to sign, which many of you might have seen in the various news stories we have been able to do. Daniel also gave us all the footage of his shoot, as well as created the video that I still cannot watch without crying.
Please visit Katie's Fotolanthropy site to read her side of the story! Also, keep her and her ministry in your prayers. Katie is launching Fotolanthropy in order to bless other families the way that she blessed us. She is truly amazing, and I just can't believe that I am so lucky to have amazing people like her in my life.
(Also- all you DFW people, Katie has been featured in D Magazine Weddings and takes amazing family portraits. If you are looking for the most wonderful photographer to work with who has the kindest heart and takes beautiful pictures- call Katie! She is beautiful inside and out!)
Wednesday, August 17, 2011
Yesterday
~*Disclaimer: This post contains discussion of breastfeeding and breastmilk.
If you don't want to read about that, then don't!*~
If you don't want to read about that, then don't!*~
Well, so after I had my little pity party on the blog yesterday I decided that I needed to get out of the house. I drug myself to the gym for the first time since I was pregnant. During my pregnancy I did water aerobics about 3 times a week. I was the youngest one by a good 30 years, and some of the women were in their 80's! They were so sweet to me while I was pregnant, and it was so fun to have a group of older women that I could ask all my mommy questions to! I had ruptured discs in my back during my pregnancy, and I had back surgery when James was exactly 6 weeks old. Between the recovery from surgery and some other things that happened before James got sick, I just had not been back. I know. Slacker.
So yesterday afternoon I went to the gym. I got on the elliptical and made it the whole 30 minutes. It was awful, not going to lie. But I finished, and went back today and did it again. It's amazing how much better I feel when I get the endorphins going. Everytime I hear the word "endorphins" I think about Legally Blonde. Does anyone else think that?! I might have watched that movie a few too many times...like every night before I went to bed my entire sophomore year in college.
I came home, and then the Mother's Milk Bank of North Texas called me to set up a time for me to bring in the milk I was donating. They suggested yesterday afternoon. I knew it was coming- I had applied and had a blood test already. But for some reason it was so hard for me to actually follow through and donate the milk.
Like I said before, James was strictly breastfed. He was so into the boobie that he refused to take a bottle. Ever. I mean he would throw them across the room when he was older. When he was younger, he would clamp his mouth shut and refuse to open it. Then he would cry and cry. When I had my back surgery, he had to take a bottle. I was on so much medication and anesthesia that I had to pump and dump. So my mom got him to take a bottle by cutting a hole in her shirt, spilling milk all around it and pretended he was getting the boobie. It didn't work at first, but he finally got hungry enough that he ate. Have you ever seen a 6 week old baby glare at you? Well, I have. James was so mad when I came home and wouldn't feed him! It just broke my heart!
So the whole time he was in the hospital, I pumped with the industrial grade pump that the hospital has. Wow, that pump is ridiculous. Each time we were discharged from the hospital, I came home with bags of frozen milk. After James died, I knew that I needed to donate the milk. It doesn't do any good sitting in my freezer. And I know that it will help a baby in the NICU who really needs the milk. But a part of me just didn't want to give it away.
So yesterday I pulled up to Baylor hospital and gave all my frozen milk away. I think the lactation nurse was a little confused why a woman with no baby and no car seat in the car would be giving her milk, but she didn't ask any questions.
After that I dropped by my sweet friend Monica's house (who is expecting twin boys! I'm so excited! :) ) to say hi, and then Matthew and I went out to the cemetery to see James. Honestly, I don't really like going out there. I know that some people find a tremendous amount of comfort going to the cemetery. I am just not one of those people. I think it upsets me more than comforts me.
So yesterday still was hard. But we got through it. Below is a video that my Dad took of James right before his big craniotomy. I think he says "momma" in it! It's the only time I ever heard him say anything close to it, and it makes me cry everytime I watch it. But- crying in a good way. I'm so thankful that I can hear his sweet little voice. One of my biggest fears is that I thought I might never get to hear him say that. I hope you enjoy! (And like every other picture/video from the hospital- I am not looking my best. I'm self-conscious about it, but I'm trying to get over that so ya'll can see more of Jamesie!)
NBC 5 News Story about James
I can't believe I forgot to post this!
On Monday, Lindsay Wilcox from the DFW local NBC station came and interviewed us about James and the giraffe. She did a wonderful story about James, the tumor, and how the baby giraffe happened to be born a week after he died. Lindsay was so incredibly kind. I just loved her! She has a 2 year old daughter and an 8 month old son who are both adorable.
I just feel like we really got along with her, and she was just so warm and welcoming. I love the way she told James' story, and I am so glad that I got to meet her!
http://www.nbcdfw.com/news/health/Couple-Wants-Giraffe-Named-In-Honor-Of-Their-Son-127785173.html
On Monday, Lindsay Wilcox from the DFW local NBC station came and interviewed us about James and the giraffe. She did a wonderful story about James, the tumor, and how the baby giraffe happened to be born a week after he died. Lindsay was so incredibly kind. I just loved her! She has a 2 year old daughter and an 8 month old son who are both adorable.
I just feel like we really got along with her, and she was just so warm and welcoming. I love the way she told James' story, and I am so glad that I got to meet her!
http://www.nbcdfw.com/news/health/Couple-Wants-Giraffe-Named-In-Honor-Of-Their-Son-127785173.html
Tuesday, August 16, 2011
1 month ago
1 month ago today I was holding James. He was struggling, but he was still here and in my arms. 2 months ago he was fine. Or what I thought was fine. He and I were throwing a ball back and forth across the living room. James was somewhat unstable as he threw the ball, but I just thought that it was normal that he wouldn't be able to sit still. He had sat still before, but for some reason I just didn't see it. Looking at the videos now, it is all so clear. Gosh, I just had no idea then.
I miss my baby. I miss him so much. I miss giving him baths. I miss walking into his room in the morning and seeing his smiling face. I miss changing his diaper. It took me 2 weeks to finally change the diaper genie. For some reason I just couldn't do it. And now I have no reason to even have a diaper genie.
I miss everything. Today especially is hard. It's 12:00 and I haven't taken a shower or gotten dressed. I've had this rule that every day I have to take a shower by noon. Otherwise I might stay in my pajamas all day and that doesn't accomplish anything. But today is different. I just can't make myself do it today.
I haven't hardly touched his room at all. My friend Cathryn and I cleaned it and organized it. But it looks exactly the same as if he were still living in it. Sometimes I just go into his room and sit in the rocker. So many memories in that rocker. It's where I fed him every night before he went to sleep. So many stories read. So many hours just rocking him in that rocker.
I've held other babies. The feeling of longing doesn't go away though. No other baby could ever take his place. I had a dream a few weeks ago that I had just given birth to a little girl. And I just hated her. Absolutely hated her. Everything she did, I hated her. And who hates their child? But I did. With every toy she played with, with every laugh, I thought to myself (in the dream) that James didn'd do that. As she got older, past the age that James had passed away, I just kept thinking that James wouldn't have been that way. He wouldn't have acted how she acted.
I asked my counselor about it (who is wonderful and is really helping me during this time) and he said that I probably had this dream because there isn't a replacement for James. For me, the thought of another child is just trying to replace my perfect baby. And that doesn't mean that I will always feel that way, but I do right now.
So, sweet James, there will never be a replacement for you. He is never far from my thoughts. Every time I get in the car I think of the car seat that should be there. Every time I go to the grocery car, I catch myself reaching for the shopping cart cover that he will sit in. Every time I see his play group friends playing, I think that he should be there. And although my friends are amazing at including me in the "normal" things that I was a part of, its still hard.
So today is a hard day. Today is one of those days that it's a choice to take a shower. And it's a choice to get up and do something. I don't know what that "something" will be. I might go to the cemetery- I've only been once since we buried him. I'm not sure. Thanks so much for all your prayers and support- especially today.
I miss my baby. I miss him so much. I miss giving him baths. I miss walking into his room in the morning and seeing his smiling face. I miss changing his diaper. It took me 2 weeks to finally change the diaper genie. For some reason I just couldn't do it. And now I have no reason to even have a diaper genie.
I miss everything. Today especially is hard. It's 12:00 and I haven't taken a shower or gotten dressed. I've had this rule that every day I have to take a shower by noon. Otherwise I might stay in my pajamas all day and that doesn't accomplish anything. But today is different. I just can't make myself do it today.
I haven't hardly touched his room at all. My friend Cathryn and I cleaned it and organized it. But it looks exactly the same as if he were still living in it. Sometimes I just go into his room and sit in the rocker. So many memories in that rocker. It's where I fed him every night before he went to sleep. So many stories read. So many hours just rocking him in that rocker.
I've held other babies. The feeling of longing doesn't go away though. No other baby could ever take his place. I had a dream a few weeks ago that I had just given birth to a little girl. And I just hated her. Absolutely hated her. Everything she did, I hated her. And who hates their child? But I did. With every toy she played with, with every laugh, I thought to myself (in the dream) that James didn'd do that. As she got older, past the age that James had passed away, I just kept thinking that James wouldn't have been that way. He wouldn't have acted how she acted.
I asked my counselor about it (who is wonderful and is really helping me during this time) and he said that I probably had this dream because there isn't a replacement for James. For me, the thought of another child is just trying to replace my perfect baby. And that doesn't mean that I will always feel that way, but I do right now.
So, sweet James, there will never be a replacement for you. He is never far from my thoughts. Every time I get in the car I think of the car seat that should be there. Every time I go to the grocery car, I catch myself reaching for the shopping cart cover that he will sit in. Every time I see his play group friends playing, I think that he should be there. And although my friends are amazing at including me in the "normal" things that I was a part of, its still hard.
So today is a hard day. Today is one of those days that it's a choice to take a shower. And it's a choice to get up and do something. I don't know what that "something" will be. I might go to the cemetery- I've only been once since we buried him. I'm not sure. Thanks so much for all your prayers and support- especially today.
Eating for a Cause!
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| Fudge brownies |
So for those of you who don't love to shop-but love to eat- this is right up your alley! Wholesome Foods Bakery is owned by Taylor Nicholson, who's brother-in-law and wife go to our church. She was so sweet, and brought so many treats to the house when we brought James home. The treats were gone in about 2 days! They were delicious.
The kicker is....all of their yummy goods are GLUTEN FREE! And they have vegan options, as well as dairy-free treats. I know many of you have food allergies or have children who have food allergies.
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| Whole grain sandwich bread |
And these don't taste like your typical dry, crumbly attempts at bread and muffins. They use only unrefined sugars and heart healthy fats. So in my book, their products really count as a vegetable if you get their amazing pumpkin muffins, or a fruit if you try the cranberry apricot foodbars! I had no idea they were gluten-free when I tried them and thought they were amazing. I was amazed to find out how wholesome they really are!
Sweet Taylor has offered to donate 50% of her profits for the rest of the month of AUGUST to James' fund. All you have to do is mention "James" when you come to her East Dallas storefront, or write "James" in the comments for any online order. How amazing is that?
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| Cinnamon sweet rolls |
WFB has many more options in their store, like cakes and cake balls, hamburger buns, pizza crust, cookie dough and more. So, East Dallas people, please stop by and support James' fund through the end of August! They are located at 718 North Buckner Ave, just east of White Rock lake near the Green Spot and Gold's Gym.
Wholesome Foods Bakery also ships nationwide. If you are wanting something other than is offered on the website, just give them a call and I am sure they would love to send you some of their scrumptious snacks.
Yummmm....it's definitely time for lunch now!
Monday, August 15, 2011
Change
The baby aisles in the stores are changing. New products drift onto the market, old ones are phased out. It’s only been a year since we stocked the nursery, and it’s already going stale. Items have been placed on clearance, discounted and disposed of for newer models. The flavors of pedialyte are even changing, or at least the ones they stock are. The world moves on imperceptibly, and James remains precisely the same, unchanged in a plot I pick the rocks off when it rains. It is to be expected of course, if James were alive, he’d age and acquire new toys. The changing seasons would translate naturally into changing outfits and accessories. Football season is around the corner, if he were here I’d buy him a ball, a new Baylor bears outfit that fit to replace his old one, now much too small. In a few years, he’d have probably realized, wisely, that the Bears were awful. I wonder what team he would have chosen to replace them.
He’d have started talking soon, building the syllables of “ah” “ma” “ba” and “da” into something approximating language. The closest he ever came to forming words came shortly before his big surgery. It was 5:30 in the morning and we’d been up all night with him. He cried and cried because he couldn’t eat and we wouldn’t feed him. Along with a chaplain, we sang to him, and the tunes (all poorly rendered) distracted him enough to stop him from crying. A few minutes before we finally left for the OR, he started talking to us. Bahs and ahs, mahs and dahs. He strung together “ma-ma” and “da-da” though that very well may have been my wishful thinking. After the long night the grim morning awaiting us, I felt relieved, grateful. Even if it was only in my head, I’m glad we got to hear it. I wonder about what else he had to say.
He was always ahead on his developmental “milestones.” Before he got sick, I just assumed he inherited my impatience. It was also the source of an odd, unearned pride, something along the lines of “He’s so quick! And he rolled over a month early! Clearly he will both win the Heiseman and become a Rhodes Scholar.” Now I often think James just knew he didn’t have the time to wait long enough to hit everything on schedule. I wonder what boxes we’d be checking now, what dates we’d mark to belatedly record in his baby book a month or two later. There are no new dates however, only old ones that we’re becoming farther and farther removed from.
Many changes should be occurring, but it is not so. He remains where he is, frozen in time. No new pictures, no new words, no new anything. Just memories that I play over and over again in my mind, afraid they’ll fall into some crack and never return.
There’s a lot of things I miss, but in an odd way change is one of them. I miss knowing that things were going to change, that James would change. It seems odd for him to have become a memorial, fixed and unchanging. He was always more dynamic than that. Perhaps that’s why, as the absence of seeing him change so quickly simply brings home the fact that he never will change again, because he is not here to change.
It’s not that his life isn’t being celebrated, that we’re not joyful for the time we had with him. I think everyone who knew him feels that way. There is much to be thankful for, and in the balance, James’ life contained more joy than anything else. He certainly left us with more. All of that is true. It’s just that James is a joyful angel, but he’ll never be a toddler.
On the other hand, James never needed to change. In my completely unbiased, objective opinion, James was the most perfect little boy who ever was. You cannot improve upon perfection. Now he’ll simply be perfect for eternity.
He’d have started talking soon, building the syllables of “ah” “ma” “ba” and “da” into something approximating language. The closest he ever came to forming words came shortly before his big surgery. It was 5:30 in the morning and we’d been up all night with him. He cried and cried because he couldn’t eat and we wouldn’t feed him. Along with a chaplain, we sang to him, and the tunes (all poorly rendered) distracted him enough to stop him from crying. A few minutes before we finally left for the OR, he started talking to us. Bahs and ahs, mahs and dahs. He strung together “ma-ma” and “da-da” though that very well may have been my wishful thinking. After the long night the grim morning awaiting us, I felt relieved, grateful. Even if it was only in my head, I’m glad we got to hear it. I wonder about what else he had to say.
He was always ahead on his developmental “milestones.” Before he got sick, I just assumed he inherited my impatience. It was also the source of an odd, unearned pride, something along the lines of “He’s so quick! And he rolled over a month early! Clearly he will both win the Heiseman and become a Rhodes Scholar.” Now I often think James just knew he didn’t have the time to wait long enough to hit everything on schedule. I wonder what boxes we’d be checking now, what dates we’d mark to belatedly record in his baby book a month or two later. There are no new dates however, only old ones that we’re becoming farther and farther removed from.
Many changes should be occurring, but it is not so. He remains where he is, frozen in time. No new pictures, no new words, no new anything. Just memories that I play over and over again in my mind, afraid they’ll fall into some crack and never return.
There’s a lot of things I miss, but in an odd way change is one of them. I miss knowing that things were going to change, that James would change. It seems odd for him to have become a memorial, fixed and unchanging. He was always more dynamic than that. Perhaps that’s why, as the absence of seeing him change so quickly simply brings home the fact that he never will change again, because he is not here to change.
It’s not that his life isn’t being celebrated, that we’re not joyful for the time we had with him. I think everyone who knew him feels that way. There is much to be thankful for, and in the balance, James’ life contained more joy than anything else. He certainly left us with more. All of that is true. It’s just that James is a joyful angel, but he’ll never be a toddler.
On the other hand, James never needed to change. In my completely unbiased, objective opinion, James was the most perfect little boy who ever was. You cannot improve upon perfection. Now he’ll simply be perfect for eternity.
Sunday, August 14, 2011
Shopping for a Cause!
So who doesn't love to shop?! I know I do. Sweet Tahnie at http://www.ahappygirl.com/ has offered to donate 50% of her profits from Stella & Dot to James's fund!
I am LOVING the Toujours collection. I wear white jewelery all the time, and it just seems to go with everything. (Or at least that is what I tell myself!) It reminds me of spring and summer, which are my most favorite times of the year.
And these gold earrings would go with everything! So simple, yet can be dressed up for a night out or worn with cotton shirt and jeans around town. (Unless you get dressed up to run errands. And if you do, and we meet at the grocery store, please ignore my sweat pants and hot pink crocs that should really be banned to the trash can. Or if it's 100 degrees and I have on my Baylor nike shorts, a non-matching t-shirt and flip flops. The flip flops are what prove I didn't just work out and I really have no excuse to be wearing work out clothes...but if we meet then please pretend that I did. End of tangent).
- To order, go to Tahnie's Stella & Dot website http://stelladot.com/
tahnie.
- In the upper right hand corner it will say, "Can't make it to the trunk show?" Find your hostess
- Click on the link that says "Find your hostess"
- Type in James for the first name and Sikes for the last name
- Click on the James Sikes link and shop away for an amazing cause!
Please check out Tahnie's blog. She has an amazing story and her little girl is just too adorable for words. I just can't believe that people I have never met want to help raise money for this terrible tumor- and I am so incredibly thankful for that! So if you love jewelery, shop away!!
Saturday, August 13, 2011
The Dallas Zoo
Thank you all so much for submitting so many forms to the Zoo! We are so thankful for everyone's support in this.
The name for the baby giraffe will be picked by the handlers that take care of the giraffe. The Zoo leadership will pick 5 names for the handlers to choose from, and then they will make the final decision.
We are so thankful to have even had the opportunity to try and name the giraffe! But we completely understand if the handlers choose a different name. As you can see, James absolutely loved the Dallas zoo. We had the opportunity to take him several times, and he had a BLAST!
And just so you all know- we support the zoo in whatever name they choose! We can always go to the zoo and call her "Jamie"- even if they don't choose it! I know that many of you have called the zoo on our behalf. I can't thank you enough for thinking of us. The zoo is well aware of the situation, and they are inundated with calls! Please know that they are doing a wonderful job of manning the phones, and they want to keep the contest fair.
Because there is a trip involved, we have told the zoo that if the name "Jamie" was to be picked, and they were to award the prize to us, we would absolutely not accept the trip. What is done with the trip would be up to the zoo, but we would whole-heartedly embrace the trip being donated to a family in need or to Make a Wish Foundation or whatever the zoo wants to do! I know these are hypothetical situations that would occur after the naming, but I just want to clear that up!
Thank you, again, for all of your support! We are so incredibly blessed by this out-pouring of love. You are so very dear to us, and we cherish all of your thoughts and prayers still.
And I have to add this- wasn't James the most beautiful baby? I just love the last picture of him. We were checking out the lion at the zoo (I think it was the lion...could have been a tiger or a jaguar. It's hard to remember!). I know he's my baby so I'm not supposed to brag...but sometimes I just can't help it. :) I miss those sweet eyes taking in the world, always inquisitive and searching for the next thing to pop up.
Thursday, August 11, 2011
Answering the "Why?" question
I know that so many of you have asked God "Why did this happen to James?". Please know that you are not alone in asking this! I have asked God this question so many times also. I think I may have said this before (or maybe I just thought it- I can't remember!) but there is no good reason why these things happen. It's the same question- "Why do bad things happen to good people?"
For me, I take so much comfort in knowing that James is with Jesus. I don't know what Heaven looks like. I don't know if you spend all day singing to God or floating around on a cloud. I know there are a lot of books out right now that describe Heaven's glory. For me, it doesn't matter what Heaven actually "is".
In my mind, there is only one thing that matters. I know that Jesus loves James more than I can fathom. I know how much I love and did love James when he was here with me. I know the deep longing I have for him and I know the aching in my heart that misses him. But I also know that God created James. He formed him and knows him more intimately than I do. And if I only know one thing- that is that God loves James more than I possibly could, so that must be ALOT!
One of the ministers at my church, Jay Cole, came and spoke to our Sunday School class a few weeks ago. I'm going to try to paraphrase what he said- and hopefully I won't butcher it too much! His words have really helped me the last few weeks ago.
Reverend Jay said that he believes that God gives every person, every being, Free Will to choose God. That means that every single living thing has the opportunity to submit to God and His will for our lives. In cases like these, that means that even something as small as a single cancerous cell has the opportunity to either a) continue reproducing and cause havoc on James' body or b) submit to God's authority and stop.
So, in other words, it is not that God just didn't choose to heal James. God is so loving that he allows all of us the chance to CHOOSE him. (And Jay, I really hope that I explained this right and didn't mess it completely up. Let me know if I need to be set straight!)
I know that this is a somewhat simplistic view- but for me, it definitely helped. And it doesn't explain always why bad things happen but to me it makes sense!
Also, while I am on the subject of God's love- I know I have said this before, but I cannot tell you how vitally important my church community and Sunday school class have been. I attend First United Methodist Church, Dallas for those of you in the area and who are looking for a church home. I have been so blessed by this amazing group of friends who have become my second family.
And I know how hard it is to get up the courage and attend a church, especially if you don't know anyone! It is super intimidating! But please know that there are people in every church who have open arms and loving hearts and want to get to know you. They want to share their lives with you and want you to be a part of their community. If you visit one church and it doesn't feel right- then keep looking! I know the "church shopping" experience can be frustrating, but the reward is so incredibly worth it.
I hope I haven't offended anyone. I'm not a theologian. I have no advanced knowledge of the Bible and have honestly been slacking off in my Bible study. The one thing I do know is that God's love is infinite and that no matter what happens, God's love remains unchanged and faithful. I hope that each of you who read this know that, and know that you are so very important and that you matter. You matter to God and you matter to me.
And so if you are struggling in the "Why's?" of life, I hope that this helped maybe a tiny bit. Or maybe it didn't! But that explanation helped me so I thought that I would share! :)
For me, I take so much comfort in knowing that James is with Jesus. I don't know what Heaven looks like. I don't know if you spend all day singing to God or floating around on a cloud. I know there are a lot of books out right now that describe Heaven's glory. For me, it doesn't matter what Heaven actually "is".In my mind, there is only one thing that matters. I know that Jesus loves James more than I can fathom. I know how much I love and did love James when he was here with me. I know the deep longing I have for him and I know the aching in my heart that misses him. But I also know that God created James. He formed him and knows him more intimately than I do. And if I only know one thing- that is that God loves James more than I possibly could, so that must be ALOT!
One of the ministers at my church, Jay Cole, came and spoke to our Sunday School class a few weeks ago. I'm going to try to paraphrase what he said- and hopefully I won't butcher it too much! His words have really helped me the last few weeks ago.
Reverend Jay said that he believes that God gives every person, every being, Free Will to choose God. That means that every single living thing has the opportunity to submit to God and His will for our lives. In cases like these, that means that even something as small as a single cancerous cell has the opportunity to either a) continue reproducing and cause havoc on James' body or b) submit to God's authority and stop.So, in other words, it is not that God just didn't choose to heal James. God is so loving that he allows all of us the chance to CHOOSE him. (And Jay, I really hope that I explained this right and didn't mess it completely up. Let me know if I need to be set straight!)
I know that this is a somewhat simplistic view- but for me, it definitely helped. And it doesn't explain always why bad things happen but to me it makes sense!
Also, while I am on the subject of God's love- I know I have said this before, but I cannot tell you how vitally important my church community and Sunday school class have been. I attend First United Methodist Church, Dallas for those of you in the area and who are looking for a church home. I have been so blessed by this amazing group of friends who have become my second family.
I hope I haven't offended anyone. I'm not a theologian. I have no advanced knowledge of the Bible and have honestly been slacking off in my Bible study. The one thing I do know is that God's love is infinite and that no matter what happens, God's love remains unchanged and faithful. I hope that each of you who read this know that, and know that you are so very important and that you matter. You matter to God and you matter to me.
And so if you are struggling in the "Why's?" of life, I hope that this helped maybe a tiny bit. Or maybe it didn't! But that explanation helped me so I thought that I would share! :)
Wednesday, August 10, 2011
Matthew's Note to the Dallas Zoo
Matthew wrote this a few days ago and included it in his submission to the Dallas Zoo. He did a great job, and it really sums up why it means so much to us to even have the opportunity to honor James in this way.
On my son's grave, there are two giraffes. One is a figurine I found at the Dollar Store, desperate to find something childlike to go with the temporary flower arrangement I'd bought. The other is the letter "J" wrapped in giraffe print fabric, a product of my wife's crafting when he was in the hospital, an ornament to decorate the room. We never planned on Giraffes. The theme for the nursery, never clearly defined, slowly evolved from the bedding into a jungle, but a jungle without giraffes. Monkeys, Elephants, and Lions all. A stenciled monkey rested above his head, swinging from vine to vine. Two monkey lamps, one on the nightstand and one on the changing table. A monkey, giraffe, and lion on the wall and hand painted by my wife onto the block letters that formed his name on the wall. But no giraffes, not a single one.
On my son's grave, there are two giraffes. One is a figurine I found at the Dollar Store, desperate to find something childlike to go with the temporary flower arrangement I'd bought. The other is the letter "J" wrapped in giraffe print fabric, a product of my wife's crafting when he was in the hospital, an ornament to decorate the room. We never planned on Giraffes. The theme for the nursery, never clearly defined, slowly evolved from the bedding into a jungle, but a jungle without giraffes. Monkeys, Elephants, and Lions all. A stenciled monkey rested above his head, swinging from vine to vine. Two monkey lamps, one on the nightstand and one on the changing table. A monkey, giraffe, and lion on the wall and hand painted by my wife onto the block letters that formed his name on the wall. But no giraffes, not a single one.
I suppose this just goes to show how little you know when you're planning to have a baby about the baby itself. How could I know James was meant to be a giraffe and not a monkey? I could not. Indeed, his preference revealed itself slowly, and then all at once. It began with a song. One day, without precedent, my wife sang him the song "Jamesie the Giraffe" it has only three words, the same as it's title, and repeats several times. It became something to sing to him, he loved singing, and he loved his name. Jamesie the Giraffe was perfect. I still sing it to him, each time in the cemetery before I leave his grave. It only seems fitting to leave him with a song. He always like that more than talking.
Jamesie the Giraffe evolved slowly into a preoccupation, a nickname we repeated without song and verse. Slowly, giraffes began to dominate his space. A Sophie the Giraffe, twenty five dollars at Nordstrom's and indistinguishable in any other way from a dog chew toy. James loved the long neck and the long legs, as it meant that no matter how he grabbed it, there was a long, pointy part to chew. And James loved to chew, first with his two bottom teeth, and later with his fangs too, cuspids racing ahead of incisors. Jamesie the Giraffe.
We took him to the zoo twice, each time with special attention to the giraffes. We bought a membership, as we just knew we'd come enough to make it a good value. Though James was too young to ride the carousel (despite how fascinating he found it) he loved the animals. Each was something new and different, something new to take in and experience. For James, life was too boring from the confines of a stroller. He wanted to get and out and do. Jamesie the Giraffe met his new giraffe friends with disbelief. They were near, entertaining. They came right up to you like a fun toy. Although he was very young, we encouraged him to feed them the heads of lettuce we bought from the zoo. James, unimpressed, first tried to eat the lettuce, and finding that unappetizing, decided instead to throw it at the ground. The giraffes came close, and he stared intently. We sang him his song, to remind him he was Jamesie the Giraffe.
He got sick all at once. A summer bug became a tumor, a tumor evolved swiftly into cancer lurking in his brain. We spent a month in the hospital, and giraffes kept us company. Sophie came the first night, when we thought we'd only spend a night or two there for fluids. More giraffes followed, as we tried to buy our little giraffe son some measure of peace, or if not peace, entertainment. His giraffe blanket, soft and silky. His giraffe ankle rattles, loud and even more fun to shake- though nothing was ever as much fun as something in his mouth. A five and a half foot tall giraffe, encamped in the corner and as big as a person, carted from room to room as we went from floor to floor, from ICU to neurosurgery, from oncology to surgery. On his door, another of my wife's craft pieces, a ring covered in giraffe print with his name, James, written on top of it. But the hospital couldn't help us, as the Doctors at last admitted, it never could. The cancer was routed by a surgery, only to return in two weeks stronger than before, spreading like a wildfire through his brain. It was time to take our Giraffe home.
The giraffes followed us there, stuffing the car and smiling from ear to ear as always. That Friday we had a birthday party. 37 weeks of James. A giraffe adorned his cake, a giraffe tablecloth draped the dining room table. Ribbons or giraffe print snaked through the serving platters, and the five and a half foot giraffe looked on from the corner. We celebrated, sang Jamesie's song, and wished him a happy birthday. He died the next day, at home in a nursery that never began with Giraffes, but ended with more than it knew. The last story we read together was "On the Night You Were Born" We never noticed until afterwards, but the final illustration on the final page is of two giraffes staring up at the moon and stars, at Heaven. Once you start to look for giraffes, you see them everywhere. We buried him on Wednesday, with his friend Sophie the Giraffe, his Giraffe blanket, his giraffe rattles, and our last book to keep him company. No lions, monkeys, or elephants made the cut. Now, giraffes always bring us memories of James. Kara wears a giraffe necklace everyday, his name stenciled into its body. On my key chain is an identical giraffe. We carry our giraffe son with us always.
To carry his name on to an actual giraffe, after we spent so much time naming him just such a creature, would be a great honor. After all that my son did and loved, it seems only fitting that we've now realized he never was a monkey, a lion, or an elephant. He was Jamesie the Giraffe, and he always will be. Thank you so much for your consideration of this special name.
Tuesday, August 9, 2011
CBS 11 News story about James
CBS 11 News in DFW came today and interviewed Matthew and I about James and our efforts to get the Giraffe named after Jamesie!
Below is a link to the video and the news story if you are interested in watching!
http://dfw.cbslocal.com/2011/08/09/naming-campaign-pushes-to-honor-8-month-old-cancer-victim/
CBS is also airing the segment again during the 4:00 news hour today (August 10th). I would love for you to check it out live if you are in the DFW area! We had a great time talking with Jay, the reporter. He was so kind and compassionate and I am so thankful that he did the story on sweet James. Jay is expecting his first son in October and so he really understood what it was like as a parent wanting to carry on your child's legacy.
Below is a link to the video and the news story if you are interested in watching!
http://dfw.cbslocal.com/2011/08/09/naming-campaign-pushes-to-honor-8-month-old-cancer-victim/
CBS is also airing the segment again during the 4:00 news hour today (August 10th). I would love for you to check it out live if you are in the DFW area! We had a great time talking with Jay, the reporter. He was so kind and compassionate and I am so thankful that he did the story on sweet James. Jay is expecting his first son in October and so he really understood what it was like as a parent wanting to carry on your child's legacy.
Monday, August 8, 2011
Giraffe Necklace
THE GIRAFFE NECKLACES ARE AVAILABLE AGAIN FOR THOSE WHO ARE INTERESTED!
Do you see this beautiful giraffe necklace?
I wear it every day now.
My sweet friend, Jean E, and my Sunday School Class contacted Lorelei from LoreleiRose etsy shop about possibly purchasing this necklace for me. Within 30 minutes of emailing Lorelei, Jean E had a response that Lorelei not only had this necklace, but she had already stamped it with Jamesie's name and was just waiting to send it to me. Lorelei shipped it immediately, and the amazing women of my Sunday School class bought all the ones she had in stock to wear in memory of James.
Lorelei has made some more necklaces, and she is offering to give $8 of every sale to James's fund.
I can't tell you how much I love this necklace. It's beautiful, and I am so grateful that Lorelei wants to donate $1 for every month of sweet Jamesie's life to his fund. If you would like your own giraffe necklace (which you should, because I hear giraffes are making a come back :) ) please follow the link and Lorelei will get you your very own.
Giraffe form
Ok so I converted the pdf to a jpg, and hopefully that will work for those of you who can't access the form. You should be able to right-click on the image and download it that way. If that doesn't work, I definitely need someone who knows way more about computers to help. Thank you again for all your help!!
Sunday, August 7, 2011
Giraffe Baby at the Dallas Zoo!
A few weeks ago, my friend Jean E. had some very exciting news for me! The Dallas Zoo has had a baby giraffe born just a few weeks ago. She's a baby girl giraffe, which is great because if she had been a boy the zoo would not have been able to keep her!
The zoo is having a naming contest right now for this precious baby giraffe.
And so we naturally had a thought....
Wouldn't it be neat if the Baby giraffe was unofficially named after Jamesie?!
The zoo is collecting entries until August 21st for names.
And so we are proposing that everyone send it the name "JAMIE THE GIRAFFE" for this new baby giraffe!
I can't tell you how excited I would be if they named this giraffe after James.
Can't you see how much he loved feeding the giraffe?! :)
I seriously want to cry just thinking about it! So would you all please download this form, and send it back to the Dallas zoo? You don't have to live in Dallas (0r the United States!) to enter. The pictures above were taken the two times we were able to take Jamesie to the zoo to see the giraffes. He was only 6 months old and almost 7 months old in the pictures. How great would it be if the Zoo was able to name the new baby Jamie?! The baby was born just a few days after we buried James.
And if you are interested in helping me with this endeavor, would you mind sending it to all of your friends?! The more people on board, the greater the chance that the Zoo will pick Jamie as the name!
Thank you all so much for your help. I'll probably keep posting this, so I am so sorry if it gets repetitive!
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!
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