Earlier this month I went fishing. My grandfather turned 74 and we made our way down to "the lake" to celebrate. From Dallas, East and then South. There are no direct ways, just a series of close enoughs. Longview, Tyler, Kilgore, Henderson, Carthage, Tatum, Center or some combination thereof, and finally Milam, little more than a stop sign coupled with a few helpful signs pointing towards the lake. Named for Benjamin Milam, a Texas revolutionary to whom I am distantly related. The lake is Lake Toledo Bend, sprawling sixty some odd miles along the Texas-Louisiana border. It is not a conventionally pretty lake, in the way Lake Como or Tahoe are, all glassy and still. They dammed the Sabine River without federal financing, and the lack of oversight shows. The lake flooded a larger basin than they expected, and they failed to cut down many of the trees in the basin as a result. The result is a submerged forest, treeless stumps jutting out of the water at irregular intervals, dead pines and oaks lurking under the often murky water. Attempts to water-ski outside of a few well defined boat lanes would best be ill-advised at best, an invitation to wrong kind of spectacle. It is a fishing lake first and foremost. I have always loved it. Though I will never be half the fisherman either of my grandfathers were and are, I love to fish.
I first came as a boy and that is perhaps why. I remember before the house was built coming with my grandparents to look at the land, a few scrubby uncleared acres on a point. I walked right up to the edge, snapped branches from the trees and threw them out in the water, eagerly waiting to see how long it would take them to get caught back in the mess of limbs clinging to the bank. Later, fishing from the pier that came before the house and sleeping in a trailer. Then, the house slowly forming- or at least so it seemed to me at the time- from the ground, a foundation that lingered for a time, bricks, plumbing, my brother and I hopping on the tractor digging the trenches for the water pipes, me standing on the back to drive the tractor a little deeper. The excitement at being allowed to use the tractor as a bulldozer to grab chunks and rock and toss them into the water to help form a retaining wall. My brother and I grabbing runners of St. Augustine grass jutting over that same retaining wall to plant in the front yard, taking every opportunity to throw dirt at one another. There was a certain thrill in all of it, the kind of thrill that is easily captured when you're boy, as a sense of unfiltered exhilaration permeates the entire experience. Catching bees in a jar and wondering if they'll make honey if you stick a few leafs of clover in. The absolute conviction that the scrap metal in the field behind your house can be turned into a shield, sword, or fort. The idea that if you throw a branch into a dammed lake it will somehow find its way to the ocean. I have grown older and traveled far from here. I have seen many lakes lauded by guidebooks, the glassy stillness of Lake Tahoe, rustic and ringed with mountains, casinos, and ski lodges; the placid calm of Como, villas littering the shore like a pageant; Lake Lucerne, an alpine fastness, the Lake itself somehow hiding amongst impossibly steep peaks. Yet despite all of that, none of them have ever filled me with the same sense of wonder I felt as a boy at Lake Toledo Bend, pulling blue gilled bream from the bank or gliding along the shore in a bank trying to ferret out a bed of "white perch."
I was reminded of that on my most recent trip to the lake, and I started to wonder what kind of boyhood James would have had. What would he have found wonder in? What kind of boy would he have been? Quiet, competitive and stubborn like me? Social and forgiving like my brother? What would he have looked like? How would his features have continued to come together? He looked so much like Kara, even in our 4D ultrasounds I could make out her features in his face. When he was born there was no doubt. Hair just like Kara had when she was a baby. Cheeks and nose like Kara. Blue eyes I used to humor myself and say looked more like my blue than hers. You can buy a program on the internet that ages faces, which I think renders an image similar to those that appear on milk cartons. I couldn't bring myself to do it, it felt too morbid. But my mouse lingered for a while on the link. I find myself thinking about what kind of joys he would have had, what we would have shared. Would James have liked to fish and tried to learn from me, or like my brother would he have found it a little boring and looked for something more entertaining like hunting? Would he have wanted a lake to water ski on? I am missing experiences I don't even know would have ever existed. I am missing everything.
The frustrating thing about losing a child is that you don't even know what to miss. The life you are mourning is incomplete, riddled with possibility. You're left mourning a construct of the child you thought you might have had, guessing at the glimpses you had of them for what could have been. As time passes and James would have been bigger, I find myself thinking more and more about the different times in his life I willl miss, from toddler to boy. It's a frustratingly incomplete process as a result, as you're left mourning potential. I always (and with no shortage of bias) felt like James had extraordinary potential- and I think every parent thinks that about their child. It's extremely frustrating never to know if you were right or just grasping at straws, to never even have the opportunity to be exposed as being helplessly biased in a parent teacher conference. There's no resolution. I don't miss James the baby or James the boy he never was. I miss James my son, each and every moment of his life that I'll never see. Then again, I'm not sure I'd want to miss anything else, as that would be just as incomplete.
Thank you for your continued thoughts and prayers.
Showing posts with label giraffe son. Show all posts
Showing posts with label giraffe son. Show all posts
Sunday, March 18, 2012
Monday, October 10, 2011
One hard day down, who knows how many to go
Well, I made it through my birthday. I still feel so guilty for having a 28th birthday and James never had one. Maybe I will feel like that every year? I'm not sure. It's hard to think about spending another birthday without him. Or another day without him for that matter.
I keep seeing this commercial. It's for the American Cancer Society and it's Ricky Martin singing Happy Birthday. Makes me cry every single time I see it. (Maybe the part I should be crying about is that I actually saw Ricky Martin in concert...in Salt Lake City...with my 75-year old (at the time) grandfather. Random much?!)
I am really dreading the next few weeks. I feel like everytime I think about Jamesie's birthday, I have a slight panic attack. I just honestly don't know what to do. There is an event at the zoo that we will probably go to. And then I guess we will go to the cemetery? Last month on his 11 month birthday I took balloons to him. One of my friends' sons had a birthday a few days before and she had gotten balloons for his birthday. And it hit me that I had never bought him balloons. He was never old enough to get one at the grocery store, or at a store in the mall. So I had this overwhelming urge to get balloons and take them to him.
The balloons stayed there for a day or two. I don't know why I needed to give him balloons. Half the time I have no clue why I do anything. I just keep thinking about what I was doing this time last year. Last year I was huge and pregnant. I was nervous/anxious/excited/filled with hope. I was so ready for James to get here, and according to my count of when I wanted his birthday to be (October 3rd), he was already late. October 3rd I was full-term, so I thought that of course he might as well come early and see the world! Of course he didn't. October 23rd rolled around and still no James.
I don't know which is worse- knowing that I never spent July17th through October 28th with him, or reliving the time between October 29th and July 16th. Because I think about how this time last year I didn't even know him. I didn't know his sweet smile. His gorgeous hair. His laid-back personality. His love of the boobie. His preference to be fully-clothed as opposed to naked for the first 6 months of his life. How he slept through the night at 6 weeks old, and was fully swaddled until he started consistently rolling over at 3 and a half months old.
I guess I'm about to find out which one is worse. Living in a world full of daily James memories, or living with the days that there are no memories from that day.
I think accepting that this is going to be a rough month is part of it. I'm just trying not to fight it. It's going to be rough. And eventually it will be over. And then we'll move to the holiday season which is going to be extremely hard too. Sometimes the thought of everything that is coming up is just so overwhelming.
So if you'd like to make a donation to Jamesie's fund in honor of his Birthday, or if you would like to donate giraffes to children who need a smile, let me know! I have an exciting announcement about the future of Jamesie's giraffes coming soon.... for a sneak peak head here!
And THANK YOU again for just reading my random thoughts. Which they always are. I'm grateful for those of you who care enough to read my ramblings....and for some reason it really helps me to process things!
I keep seeing this commercial. It's for the American Cancer Society and it's Ricky Martin singing Happy Birthday. Makes me cry every single time I see it. (Maybe the part I should be crying about is that I actually saw Ricky Martin in concert...in Salt Lake City...with my 75-year old (at the time) grandfather. Random much?!)
I am really dreading the next few weeks. I feel like everytime I think about Jamesie's birthday, I have a slight panic attack. I just honestly don't know what to do. There is an event at the zoo that we will probably go to. And then I guess we will go to the cemetery? Last month on his 11 month birthday I took balloons to him. One of my friends' sons had a birthday a few days before and she had gotten balloons for his birthday. And it hit me that I had never bought him balloons. He was never old enough to get one at the grocery store, or at a store in the mall. So I had this overwhelming urge to get balloons and take them to him.
I don't know which is worse- knowing that I never spent July17th through October 28th with him, or reliving the time between October 29th and July 16th. Because I think about how this time last year I didn't even know him. I didn't know his sweet smile. His gorgeous hair. His laid-back personality. His love of the boobie. His preference to be fully-clothed as opposed to naked for the first 6 months of his life. How he slept through the night at 6 weeks old, and was fully swaddled until he started consistently rolling over at 3 and a half months old.
I guess I'm about to find out which one is worse. Living in a world full of daily James memories, or living with the days that there are no memories from that day.
I think accepting that this is going to be a rough month is part of it. I'm just trying not to fight it. It's going to be rough. And eventually it will be over. And then we'll move to the holiday season which is going to be extremely hard too. Sometimes the thought of everything that is coming up is just so overwhelming.
So if you'd like to make a donation to Jamesie's fund in honor of his Birthday, or if you would like to donate giraffes to children who need a smile, let me know! I have an exciting announcement about the future of Jamesie's giraffes coming soon.... for a sneak peak head here!
And THANK YOU again for just reading my random thoughts. Which they always are. I'm grateful for those of you who care enough to read my ramblings....and for some reason it really helps me to process things!
Wednesday, September 14, 2011
Baylor Proud Post about James
Baylor Proud, which is a blog that our alma mater Baylor hosts, featured a story on James recently.
Enjoy!
Tuesday, September 13, 2011
Haze
I still remember the first time the Haze descended upon me. You'll forgive me if I capitalize it, like a proper name, something of importance, which of course it is not to anyone but me. James had died less than two hours before. The nurse from the hospice, not out regular nurse, had arrived. Our regular nurse had a pending engagement with Harry Potter, a movie I still haven't seen for that reason. She told us about it the first time we met her, huddled in an ICU room and trying to absorb the fact that this woman would be the one who came to declare our son dead after he died in our arms. If Harry Potter did not interfere. I wonder if she knew then, sharing that piece of information with us as we were trying to talk about anything but, that we had very little time left. I wonder if she knew we had 72 hours give or take, at home with him after we left the hospital. I still remember the walk from the room to the car, James sleeping peacefully, never to awake. I miss even that. In any event, James died during Harry Potter, and a backup nurse came to meet James only in death. A friendly enough fellow I suppose, though I can't imagine what the circumstances call for.
He'd left to talk with the funeral home owner who'd come to pick James up in a minivan with a car seat in the front seat, as if James would ever have been allowed to sit in the front seat. For some reason, I don't remember why, we'd put James in his crib. We'd dressed him, an awkward process that I do not want to remember, but can't not. He was lying there and for some reason I was suddenly alone, just he, I, and the crib. I'd cried before of course, long jagged sobs with my father, mother, or uncle's arms around me. We'd sat alone in his rocking chair after, and I'd composed myself enough to tell him how desperately I loved him, and how I hoped he'd see lots of friends on the other side, that if he asked my Grandparents they'd take him to get a new toy. But for some reason I felt especially isolated in those moments with him, waiting for the funeral director to come back and take him, in perfect agreement with the hospice nurse that he was dead and didn't need the crib anymore, wondering if I'd like to carry him to the mini-van. In the end I did, because I carried him into the house, and I wanted to carry him out as well. I was his father. But I didn't even know where the van was going. I'd never gotten that far.
And then it hit me. A sudden, swift haze, an edge of unreality and isolation descending over the whole scene. The voices in the house, the dozen or so odd people gathered in vigil around my son's deathbed distant, indistinct voices. To this day I couldn't tell you who all was there, or how or when they arrived. A strange disconnect emerged between us, a Haze isolating me from the rest of it, the world beyond. I often respond appropriately, I am witty, functional, even effective, but the Haze comes now and then, and I'm right back where I started, alone in his room watching him as though he were sleeping in his crib. It's an odd sensation, a curious disconnect. It's not that I'm not there, I'm just thinking about somewhere else, and everything else is out of focus, as if I'm listening to them underwater or drunk. It's not all the time. Just every now and then. Small things. Checking the mail and all the bills are to James Sikes, even though both of the James Sikes I knew are dead and gone. My Dad is Jim and I'm J. Matthew. Ten generations and I'll be the last one. If only AT&T knew. The Haze strikes me, and takes a few minutes or an hour, whatever the case may be. Like a pall descended over everything, coloring the margins with grief and deflecting the day. When it happens though, I'm right back at the crib, alone with my dead son, and I still have no idea what to do next. I'm still working on that, some days the answers are better. There are comforts- Jamie the Giraffe, adorable as ever, James' fund, the hundreds, thousands of people who have been moved by him. I'm selfish enough that I'd trade it all for another hour of him laughing.
I miss him desperately and constantly, with a sense of urgency that is completely inappropriate to the situation. So I'll give a few more hours, a few more days here and there when I'm not too busy to the Haze, and in the end it will pass, as it must. Because time will not stop, and our moment at the crib has passed. I will pray, and hope God has an answer. Eventually perhaps, the Haze will pass. I don't ask for timelines anymore. I learned long ago there's no use in bothering.
He'd left to talk with the funeral home owner who'd come to pick James up in a minivan with a car seat in the front seat, as if James would ever have been allowed to sit in the front seat. For some reason, I don't remember why, we'd put James in his crib. We'd dressed him, an awkward process that I do not want to remember, but can't not. He was lying there and for some reason I was suddenly alone, just he, I, and the crib. I'd cried before of course, long jagged sobs with my father, mother, or uncle's arms around me. We'd sat alone in his rocking chair after, and I'd composed myself enough to tell him how desperately I loved him, and how I hoped he'd see lots of friends on the other side, that if he asked my Grandparents they'd take him to get a new toy. But for some reason I felt especially isolated in those moments with him, waiting for the funeral director to come back and take him, in perfect agreement with the hospice nurse that he was dead and didn't need the crib anymore, wondering if I'd like to carry him to the mini-van. In the end I did, because I carried him into the house, and I wanted to carry him out as well. I was his father. But I didn't even know where the van was going. I'd never gotten that far.
And then it hit me. A sudden, swift haze, an edge of unreality and isolation descending over the whole scene. The voices in the house, the dozen or so odd people gathered in vigil around my son's deathbed distant, indistinct voices. To this day I couldn't tell you who all was there, or how or when they arrived. A strange disconnect emerged between us, a Haze isolating me from the rest of it, the world beyond. I often respond appropriately, I am witty, functional, even effective, but the Haze comes now and then, and I'm right back where I started, alone in his room watching him as though he were sleeping in his crib. It's an odd sensation, a curious disconnect. It's not that I'm not there, I'm just thinking about somewhere else, and everything else is out of focus, as if I'm listening to them underwater or drunk. It's not all the time. Just every now and then. Small things. Checking the mail and all the bills are to James Sikes, even though both of the James Sikes I knew are dead and gone. My Dad is Jim and I'm J. Matthew. Ten generations and I'll be the last one. If only AT&T knew. The Haze strikes me, and takes a few minutes or an hour, whatever the case may be. Like a pall descended over everything, coloring the margins with grief and deflecting the day. When it happens though, I'm right back at the crib, alone with my dead son, and I still have no idea what to do next. I'm still working on that, some days the answers are better. There are comforts- Jamie the Giraffe, adorable as ever, James' fund, the hundreds, thousands of people who have been moved by him. I'm selfish enough that I'd trade it all for another hour of him laughing.
I miss him desperately and constantly, with a sense of urgency that is completely inappropriate to the situation. So I'll give a few more hours, a few more days here and there when I'm not too busy to the Haze, and in the end it will pass, as it must. Because time will not stop, and our moment at the crib has passed. I will pray, and hope God has an answer. Eventually perhaps, the Haze will pass. I don't ask for timelines anymore. I learned long ago there's no use in bothering.
Thursday, September 8, 2011
Fox Channel 4 Story
The Zoo sent me some of the actual news clips so now I can embed them in the blog! Here's the DFW fox story.
Friday, September 2, 2011
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.
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.
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!
Wednesday, July 20, 2011
Day Twenty Eight
Twenty eight days ago, James was alive and well, suffering a persistent summer bug. 4 weeks, less than one month. Today we buried him and celebrated his life in memorial. In that period, I have learned the word rhabdoid, brushed up on anatomy, and taken a crash course in neurosurgery. All in less than the time that it once took to get through half a quarter of law school. Holidays came and went, days of the week, once so important, faded into inconsequential 24 hour cycles as everything, everything became regulated by James' health. We ceased to note the passing of the weeks, even the season came as a surprise. I suppose today was meant to end that, that we gather before a hole in the ground and in a church with friends and family to say goodbye. The process is not nearly so neat however.
Today felt surreal. Early to the funeral home, a brief visitation with a body that was a poor imitation of my son but which nevertheless moved me to tears. We buried him with his Sophie giraffe, his giraffe blanket taking the place of the lining of the coffin. His giraffe rattle and pacifier, and finally the first and last book we read him- "On the Night You Were Born" with the simple message that was always so true for James, that you are the one and only ever special you. We read it to him in the hospital the night we met him, and we read it to him the morning of the day we said goodbye. The cemetery service was intimate and dignified, our family sharing freely about James and his enduring legacy in each of us while the minister ably returned him to the soil. Dust to dust, ashes to ashes.
The time between the burial service and the memorial service passed quickly and in a daze, as though we still could not quite believe the first had happened and that the second would follow. I wrote something to say at the service, and Kara slept. I wrote it out longhand, which forced transcription onto the ipad. My handwriting remains atrocious, no matter what the circumstance. I don't think either of us quite came to believe it was real until we were standing there, in a sanctuary filled with people gathered to mourn James, canvas pictures of him a few feet away from us.
The service itself captured what we wanted it to- a positive, affirming testament to James life and a celebration of the time we had with
him rather than a mourning the time we will not have. The ministers ably coached our words from this blog and the scripture into a coherent whole, a task complicated by the complete randomness with which we chose that scripture, verses and chapters drifting into our minds while we sat with the minister. Like so many other things, we committed quickly and without thinking- we had no time for anything else. Kara and I both spoke, Kara thanked everyone for their support, and I mumbled a few things about James, the only subject it seems I'm fit to speak on recently.
Afterwards, the foundations class hosted a terrific reception complete with no less than 100 dozen cookies, brownies, and treats I ate whose names I simply do not know. We were overwhelmed by the number of people who attended, and by the outpouring of love and support for us and for James. Thank all of you, though we'd never admit it, I think both of us worried we'd have an empty room. It was deeply gratifying to see so many people there, all of whom had lives that had not been operating at stop for four weeks, celebrate our son. We cannot thank the church and the class enough for putting all of this together for us. We are deeply humbled.
Afterwards we returned home. I have no idea what happens next.
Thank all of you for your continued prayers and support, and thank all of you who took the time to come. I keep expecting a punctuation mark on this journey, some signal that a chapter is closed and we should move in to the next. I have yet to find it. Below are the words Kara
and I spoke today.
My part:
We knew a lot about James. We knew his smile and the easy, always welcome sound of his
laughter. We knew of his preference for pears though never before mommy milk. We knew how effortlessly and continually joyful he was. Always eager to play, and eager to make new a acquaintances.
When taking his last photo shoot the photographer asked us if he had any favorite toys that might make him smile. We didn't really know what to say. He wasn't big on toys, he was big on you, big on interaction and play. No thing or object in particular moved him- he just wanted people. If they wanted to play with toys, fine. James just wanted to play with them. He liked to experience the unexpected from them- a silly face or the swish of a ponytail. Even in the hospital the surest way to calm him down was to take a walk with him in the stroller or on your shoulder.
With so many new things to take in he couldn't remember to be mad- and he wasn't really good at staying Mad anyway, it just wasn't his gift. He definitely didn't get that from me. There are many things though we will never know about James. We will never know his favorite movies, cars, pizza, color, if he was right handed, left handed, or simply ambidextrous. We lost James before he could tell us all of that- and I believe he would have let us know very loudly. He was anything but subtle.
Even though we will never know so much, even though so many hopes and dreams will never translate into memory, We can still know a lot about James. We can know the perfect love that surrounded him always. We can know how desperately we wanted him. We can know how blessed we were by him, our once and future angel. We can live each day with the same joy and the same boundless, eager love. We will miss James horribly and constantly. But we will not ever have to forget him. We can always know him, and visit from time to time that warm space he occupies in our hearts. We can wait in eager anticipation of the day when we will see him again and bask in the warmth of his smile. And we will, we always will.
Goodbye son, we love you. Always. We will see you soon.
Kara:
Today felt surreal. Early to the funeral home, a brief visitation with a body that was a poor imitation of my son but which nevertheless moved me to tears. We buried him with his Sophie giraffe, his giraffe blanket taking the place of the lining of the coffin. His giraffe rattle and pacifier, and finally the first and last book we read him- "On the Night You Were Born" with the simple message that was always so true for James, that you are the one and only ever special you. We read it to him in the hospital the night we met him, and we read it to him the morning of the day we said goodbye. The cemetery service was intimate and dignified, our family sharing freely about James and his enduring legacy in each of us while the minister ably returned him to the soil. Dust to dust, ashes to ashes.
The time between the burial service and the memorial service passed quickly and in a daze, as though we still could not quite believe the first had happened and that the second would follow. I wrote something to say at the service, and Kara slept. I wrote it out longhand, which forced transcription onto the ipad. My handwriting remains atrocious, no matter what the circumstance. I don't think either of us quite came to believe it was real until we were standing there, in a sanctuary filled with people gathered to mourn James, canvas pictures of him a few feet away from us.
The service itself captured what we wanted it to- a positive, affirming testament to James life and a celebration of the time we had with
him rather than a mourning the time we will not have. The ministers ably coached our words from this blog and the scripture into a coherent whole, a task complicated by the complete randomness with which we chose that scripture, verses and chapters drifting into our minds while we sat with the minister. Like so many other things, we committed quickly and without thinking- we had no time for anything else. Kara and I both spoke, Kara thanked everyone for their support, and I mumbled a few things about James, the only subject it seems I'm fit to speak on recently.
Afterwards, the foundations class hosted a terrific reception complete with no less than 100 dozen cookies, brownies, and treats I ate whose names I simply do not know. We were overwhelmed by the number of people who attended, and by the outpouring of love and support for us and for James. Thank all of you, though we'd never admit it, I think both of us worried we'd have an empty room. It was deeply gratifying to see so many people there, all of whom had lives that had not been operating at stop for four weeks, celebrate our son. We cannot thank the church and the class enough for putting all of this together for us. We are deeply humbled.
Afterwards we returned home. I have no idea what happens next.
Thank all of you for your continued prayers and support, and thank all of you who took the time to come. I keep expecting a punctuation mark on this journey, some signal that a chapter is closed and we should move in to the next. I have yet to find it. Below are the words Kara
and I spoke today.
My part:
We knew a lot about James. We knew his smile and the easy, always welcome sound of his
laughter. We knew of his preference for pears though never before mommy milk. We knew how effortlessly and continually joyful he was. Always eager to play, and eager to make new a acquaintances.
When taking his last photo shoot the photographer asked us if he had any favorite toys that might make him smile. We didn't really know what to say. He wasn't big on toys, he was big on you, big on interaction and play. No thing or object in particular moved him- he just wanted people. If they wanted to play with toys, fine. James just wanted to play with them. He liked to experience the unexpected from them- a silly face or the swish of a ponytail. Even in the hospital the surest way to calm him down was to take a walk with him in the stroller or on your shoulder.
With so many new things to take in he couldn't remember to be mad- and he wasn't really good at staying Mad anyway, it just wasn't his gift. He definitely didn't get that from me. There are many things though we will never know about James. We will never know his favorite movies, cars, pizza, color, if he was right handed, left handed, or simply ambidextrous. We lost James before he could tell us all of that- and I believe he would have let us know very loudly. He was anything but subtle.
Even though we will never know so much, even though so many hopes and dreams will never translate into memory, We can still know a lot about James. We can know the perfect love that surrounded him always. We can know how desperately we wanted him. We can know how blessed we were by him, our once and future angel. We can live each day with the same joy and the same boundless, eager love. We will miss James horribly and constantly. But we will not ever have to forget him. We can always know him, and visit from time to time that warm space he occupies in our hearts. We can wait in eager anticipation of the day when we will see him again and bask in the warmth of his smile. And we will, we always will.
Goodbye son, we love you. Always. We will see you soon.
Kara:
Friday, July 15, 2011
Day Twenty Three
Today James had his birthday party. He is 37 weeks old. As you can see the theme is appropriately giraffe. Jamesie the Giraffe demanded it. The party came together quickly. Long ago, i'd thought as James' birthday would fall on a Saturday, I'd do a tailgate themed party and watch the game. I wanted to show him all the different positions he could play, and encourage his athleticism. He gets that from his mother- I am aggressively uncoordinated. James never suffered from that, even as a two week old baby he rolled over, refusing to sleep on his back. We were so scared of SIDS and him somehow suffocating. That seems so silly now.
We had a cake from society bakery- a vanilla on vanilla cake with his name and a wonderful giraffe on it. Every time before now when I've called there to get a cake I've been told to wait a week. Today I got one the next day- sometimes, things do break James' way. The cake came out better than I expected, and was delicious on top of that.
Giraffe everything. Even a five and a half foot tall giraffe in the corner. His Uncle Tony cooked up squash and asparagus, while his Papa Jim and Uncle Patrick grilled steaks and chicken. Uncle Matt supervised and nursed a beer. James even tried some of his cake, washing it down with some mommy milk. He can barely swallow now, but he managed to get the icing down. Like so many things I once made a priority as a parent, offering vegetables before sweets is simply no longer on my radar.
When the day started, I did not believe we would have a party. James woke us up at 3:00 AM seizing, thrashing in his Moses basket in the slow, rhythmic writhing we've come to associate with his seizures. We waited five minutes as instructed and gave him Ativan. No effect. We waited another five minutes and gave another dose. Nothing. We called the hospice and gave another. The triage nurse returned our call and said the on-call nurse was on the way, and told us to give another dose of Ativan. We did. Nothing changed. The on-call nurse said she was 30 minutes away 30 minutes after we first called.
Panic ensued. We called Kara's Dad, a doctor, and started giving James phenobarbitol, his other seizure medication. He kept seizing, legs bicycling slowly- he barely has the energy to even seize properly anymore. Finally, the hospice nurse arrived. I'll be honest, if I didn't think my son was dying I would have throttled the woman. Used to working with adult patients, she seemed to have no idea what to do with us. Wide-eyed and confused, she kept saying over and over "I'm so sorry your son has a brain tumor." "If there's one thing I do not need from my medical professionals, it's cancer eyes. Especially when they think he's dying. If you can't help, get the hell out of my way. She literally asked "Do you think he's seizing because of the tumor?" Why yes, yes I do. She fumbled with the name of our oncologist. She couldn't get the spelling right to call. She finally managed to get a hold of the on-call oncology doctor. By this time I'd ordered her out of the room and we'd told Kara's Dad to do the actual talking with the doctors.
If she displayed mere incompetence, our third year resident friend actually managed to make things worse. When we told him what we'd given James, he informed us that he would rush James to the PICU immediately because that much ativan and phenobarb would cause respiratory arrest. When informed that James' head was literally swelling because of the tumor, he said "Oh Jesus." So that didn't help much. Convinced we were losing him, we cradled him in our arms while he was still seizing, sang to him, and told him it was ok to go and that we loved him very much. I called my family and told them it was time and to come. I used the word respiratory arrest because it somehow sounded cleaner than dying. By this time, Kara's Dad had our usual pediatrician on the phone and she told us that James was not dying, and we could give him more phenobarb. So we did. It didn't all at once- but James breathed fine. Exhausted, we fell asleep. When we woke up, James was still alive. So were we. Concerned phone calls from our oncologist (who I think have probably given that poor resident quite a tongue-lashing) led to a new plan for James' seizures and pain medication, as it's very possible at this point his movement is a pain response, and as he can no longer cry, something we need to address in a different way. Together, the changes- the medications delivered to our home by our new friends from hospice- appear to have worked. James is at peace once more. The experience shook me. Having an academic understanding of the fact that your son is at home to be at peace is one thing. It is quite another to hold him in your arms and believe he will be leaving you soon.
After napping throughout the day after our adventure overnight, our families reconvened at our house and we hosted James' party. Everything fell into place naturally, with all the people that love him surrounding him. We'd never planned to do this today, we just did it. Kara mentioned it a few hours before it happened, and in those hours we put it all together. We sang him happy birthday- the boy deserves to hear it at least once, and sat around and talked. People took turns laying next to James and holding his hand. I believe that he knows how much we love him, and that he enjoyed his party. Jamesie always liked a good party. The most important thing now is that James know how much we love him. When we first learned of his diagnosis, we committed to being positive about this experience. Although our plans have changed drastically since that day, we remain committed to that. I do not think James is well-served by a gathering of friends and family on death watch, mourning him even while he lays next to them, breathing and looking as beautiful as every. I think celebrating his life, celebrating the joy he brings into our life, is the better choice. And so I choose that.
That's not to say we don't break down- we do, often and about the strangest things. His firetruck in the corner- he used to love to honk the horn, he got a kick out of making it go over and over again. Reminiscing on a walk about when mommy was pregnant with him and could barely make it around the block last summer. A thousand small things, as our very identity is tied up in him. But we can't help him by doing that. We can only love him. And so we do.
I continue to be overwhelmed by the outpouring of support and love for James. Hearing about how his story has impacted people positively warms my heart. Please continue to pray for James, that he continue to be comfortable and at peace.
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