Wednesday, September 28, 2011

Dallas Association of Young Lawyers Day at the Zoo


For all of our Dallas lawyer friends- this is a great event for you to attend!  (I don't know if we have ever said, but Matthew is an attorney in Dallas.  Maybe you guys have figured that out already.  I honestly cannot remember what we have said about our "8-5" lives.)

The DAYL is having a picnic and day at the zoo and accepting donations to the James Camden Sikes Fund that day.  October 29th would have been James's first birthday.  Matthew and I are tentatively planning on attending- every day is sort of a case-by-case basis, but we hope that we feel well enough to attend.

It should be a perfect fall day to be at the Zoo and see our sweet (or ornery, but I still think she is sweet!) Jamie.

So if you are an attorney in the DFW area, feel free to mail in your form.  And if not, don't let that stop you from heading to the zoo that day.  I promise the DAYL members are incredibly kind, and won't bite!! :)

A Big Thank You to the DAYL for thinking of our James...we are so grateful for you.

Tuesday, September 27, 2011

Come Back to Me

My last thought every night before I fall asleep is "Come back to me".  It's the first thing I think in the morning when I wake up.  At night, it's usually more of a desperate plea.  That I can't bear the thought of spending one more day without my baby.  Sometimes it's a quiet whisper, sometimes silent, but lots of times it's a cry in between sobs.

Please....just come back to me...one more day...one more hour.  One last kiss.  One last hug.  One last swing.  One last smile.  Even though I knew the last time I did all those things would be the last,  could they have ever been enough?


I know everyone will tell me that "James is in a better place" but that is the very last thing I want to hear.  Although I know he is, the truth is, I want him here with me.

I still wake up in the middle of the night and walk into his room.  I don't know when it will hit me that he's not in there.  I still glance in my mirror when I drive, hoping to catch his reflection in the mirror that was in front of him. Neither are in the car anymore.  The baby bjorn and the grocery cart cover are- I can't seem to move them.  My back seat used to be filled with toys and diapers and outfit changes, just in case.  Now its filled with school books.  Such a short time it was filled with the baby gear.


I still don't understand how it happened.  It's like I can't get my brain around it.  And I just don't understand why it had to happen to my baby.  To my James.  A young girl in one of my classes told me yesterday that she was pregnant unexpectedly and they think she might be having twins.  I mean, really God?  She's going to have two babies that she doesn't really want and I couldn't even keep my one?

C'est la vie, right? Sometimes things just happen.  I still don't think everything happens for a reason.  And I know people are going to disagree with me, and that is fine.


The other day the Lifehouse song "Broken" came on my pandora- which was kind of random because I was on the Adele station and I don't think Lifehouse and Adele are that similar.

I'm falling apart, 
I'm barely breathing
with a broken heart 
that's still beating



I googled the song because I was wondering what the meaning was behind it.  One of the band members said that he wrote it after visiting a friend who was very sick with cancer. And I guess that is why it makes sense to me.  

Maybe I will spend the rest of my life thinking that...every night and every morning.  Come back to me.  For some reason I just keeping hoping that one day it will be true. 

Saturday, September 24, 2011

Wallpaper




There is a picture on my- James’ iPad- of James smiling. It’s from his newborn shoot. There are two different pictures of him on the iPad. One is the smiling picture from his newborn shoot. He’s looking at the camera from his side and his eyes are wide open, mouth open, gawking at the lens. During the shoot we paused several times to try to lull him to sleep. The best, or most classic, newborn pictures are those of the sleeping, innocent child. They are designed to capture the child at his most innocent, before age and time wash away the wonder of a sleeping baby and leave you with a smiling child. James refused to sleep during his newborn shoot. We tried feeding him, rocking him, warm blankets. He knew better than to sleep, even at 11 days old. James didn’t have time to be that kind of baby. I think he knew that. He never napped much, he was always wide awake. His eyes were incredibly alert, just as they are in that picture. He always seemed so much more engaged than I thought a baby would be. Perhaps it is only that I was his father and I need reasons, explanations to provide some theme so I can justify things in retrospect. But I think it was more. The other picture on the iPad is the wallpaper picture. He’s smiling at the arboretum, sitting in front of the tulips, a hand outstretched to grab one. Joy came so easily to him, to my wonder and relief.

My Dad bought the iPad while we were in the hospital. James loved to play with phones, my Dad thought that the iPad would be something fun for him to play with during chemo. James had a tactile fascination for how responsive the touch screens were. He marveled at how easily he could manipulate them. The iPad was something we could use to entertain him during the hundreds of hours we’d spend in the hospital while James got his treatments. We eagerly loaded it up with every children’s app we could think of. Doodling apps, PBS Kids, Disney, Rattles, and more. We researched the “top” kids apps and downloaded them all in James' hospital room, liberally abusing the Hospital's free Wifi. We consulted the nurses for advice.

The apps mock me now. Eveytime I turn the iPad on to fire up hulu or check my e-mail, I feverishly scroll to the last screen where I’ve stashed all the non-kid apps. Past Elmo, the Christmas Rattle, and the Doodler James once used to trace lines across the screen. I don’t always make it. Sometimes I’ll be a touch slow, click on the doodle app and wonder that my son was once alive enough make the doodles here. I e-mail them to myself, over and over again, because I always want them at the top of my inbox, as if he just drew them the over day. If I spend all my time on James I won’t do anything else. I won’t ever delete those apps of course. I won’t do anything to materially alter the IPad, that’s inconceivable. It belonged to James, and is therefore sacrosanct.

The iPad is just one reminder. A symptom of a larger, intractable problem. A reminder of a hope, dream, and future I once had that will never be. No hours of chemo, no need to worry about ways to entertain him through long hours. No need to worry about infections. The hard work I spent studying the notebooks the chemo nurses gave us, harder than I ever studied for any exam, wasted. All of this made still more frustrating because I spent time on that instead of with him. All of these are reminders that there is nothing left of James to hold onto. The feel of his hair, the tenuous strength of his fingers grasping yours. All of that is gone, with his piercing eyes. There’s nothing to hold onto. I’m left with his newborn photo, James stubbornly mocking the photographer and refusing to sleep.

That’s not to say that there aren’t comforts. We have had a great many. James has left a legacy far greater than anything we dreamed possible. I am moved by the responses that his story has generated. Still, when I’m flicking through the touch screen to avoid laying eyes on the doodle app, I can’t help but wish I was reading a blog about someone else’s life. Someone else’s child, and not writing about my own. I would never wish what happened to James on anyone else. No one should experience this. I just wish it didn't happen at all.

As always, thank you for your prayers. They are a continuing source of strength.

Tuesday, September 20, 2011

James Week by Week

I've added a new page called "James week by week".  I totally copied my sweet friend, Courtney, and took a picture of James every week in the same chair until the time when he got sick.  I've put the first few weeks up...and I'll add more as I am able to get through pictures!  Sometimes it's hard to look at them for a long time, so be patient with me and eventually they will all get put up!  I hope you enjoy :)


http://jamescamdensikes.blogspot.com/p/james-week-by-week.html

Saturday, September 17, 2011

Just keep Swimming...

For me, things are suddenly coming in to focus in random spurts.  I don't know how else to describe it, but it's like most of the days spent in the hospital are a blur.  I couldn't tell you what happened any day, other than that it started and ended.  I haven't gone back to read what we wrote on those days- I just can't yet.  But now at times, the blurred days came strikingly into focus.  It's almost like a scene in a movie I'm watching, and I can see myself and James and the doctors and whoever else was in the room with such precision. 

For example, I was driving the other day and for some reason the moment that the Neurosurgery PA came into our room and told us that it was possible that James had a brain tumor popped into my head.  At the time, I had no idea who this woman was or why she was in the room.  I had no idea that she was with the neurosurgery team, or that was a PA, or what her role was at all in the hospital.  I had no idea that she didn't belong on B6 which is the first floor we started on.  She had really belonged on C9, and that her being in our room signaled a drastic change in why we were in the hospital. 

I had no idea about the relationship I was about to develop with her.  I had no idea that she and I would at times disagree on James' treatment, or what procedures he was going to have.  But watching this scene play out, it was like I knew all of this information in the moment.  So watching it again, knowing the full effects of what was going to happen, somehow makes it so much more tragic.

I guess maybe in some ways it's like the part in Harry Potter where the old wizard (Dumbledore?  Is that his name?  Can't remember.) pulls the memory out with a stick and places it into the water-like substance that collects all the memories. 

And then all of a sudden, the memory fades.  Logically I know that very quickly after our conversation we were moved to the neuro floor.  I know that they began monitoring Jamesie's heartrate and since it was so irregular that we moved up to the PICU even faster.  And then later I remember our nurse, Simon, who took care of James almost every night in the PICU.  I remember that the lights were turned all the way on, and even though it was so late at night. They were so bright. 

Yesterday I went back up to Children's.  I wanted to donate some basic toiletry items that I had collected to give to the social worker who was so wonderful to us.  (FYI- those tiny bottles of shampoo and things that you get in hotels are amazing for hospital stays.  They are small enough that they last for a few days and you can toss so you don't have to tote them around forever during your stay.  I've begun collecting them whenever I'm in a hotel to donate back to the hospital.  Little things like that make a HUGE difference when you come with literally just the clothes on your back and don't really anticipate making the hospital your home for the next month). 

I also went to the child-life department to see if they could help me understand how to get my baby's footprints out of this mold.  They helped, so that was good.  It was so surreal being back there.  People asked if I needed help finding my out.  It was almost funny because that hospital was my home for a month.  It's amazing how quickly it all comes back.  Of course I can find my way around. 

Our sweet social worker, Kelly, offered to page my favorite PICU doctor.  I heard that he was doing research, so I didn't get to see him, but maybe next time.  For some reason I have my favorites- which is terrible I know- but I just truly loved the doctors and nurses in the PICU.  I definitely had my fair share of little battles with them, but I know that they have to desperately love what they do.  They make such a difference.  Maybe I'll become a PICU doctor one day.  Who knows.

I also went by the hospice office yesterday to pick up a hand and foot mold they had done for James.  I don't know why, but yesterday I got a little obsessed about having those molds.  I know they are a little weird, but for some reason I just had to have them yesterday.  In some ways I have stopped questioning my random spurts of energy.  I think they are little moments when I am trying to gain some sort of control over my life.  Or maybe they aren't. Maybe I psychoanalyze myself a little too much! :)

Oh- and I donated all the baby bottles yesterday too.  Whew, I guess it was a weirdly productive day.  I took them to a woman's shelter.  I have no idea if they will use them or not.  I had no idea where else to take them.  They aren't technically "new" because each of them had been tried a grand total of once in my efforts to get James to take a bottle.  I think I owned about 3 bottles of every type on the market.  It was a huge bag. 

I never have any idea what to label these posts.  For some odd reason, the tune "Just keep swimming" that Dori sings to Nemo in Finding Nemo just came into my head.  Maybe that's what the days are right now...Just keep swimming.  Just keep swimming, swimming, swimming. 

Forward momentum is always good, right?!

Friday, September 16, 2011

Two months

Two months ago today, I woke up and knew that James would die. I woke up with the sound of his labored breathing in my ears and hoped it would pass. I bargained with myself even then. A few minutes on oxygen will get him on track, just a few. I won't turn the oxygen on all the way- I'll leave something in reserve for when it gets worse, because it's not the worst yet. I think the mask is broken. That must be why it's not working- I changed the tubing, that will make a difference. Small things, little deals that mattered to no one but me.

There was no bargain to be made though, no deal to be struck. Within a few hours I'd given up and turned the oxygen on full blast- the obnoxious whir that at first seemed so annoying completely faded into the background. After he died I couldn't get it out of the house fast enough.

This month went faster. The timelines are accelerating, especially as we insert ourselves back into the world at large, in roles that were suspended totally while we watched James. Even so, the world still seems to have lost its axis. In many ways, it's a question of relativity. Your child is the thing in your life by which the rest of your roles are defined- your world in many ways revolves around them and their needs. Your work feeds them and provides for them, your family is based around them after they're born, not your parents. Your relationship with your spouse is triangulated by them. Without them, the central narrative around which much of your life depends vanishes. The rest of the roles have to readjust themselves without a common point to fix themselves on. Everything suffers collateral damage, and the process of adjusting is colored all the while by grief. No matter how much time passes, it still seems to me on some days that it didn't happen, that it was all some sort of nightmare that I am almost certain to wake from. But that's just more bargaining. I'm not waking up.

So I wouldn't say it was a better month. Faster, yes. But better is also relative. James didn't die this month, so this month was relatively better than July. Thank all of you for your continued support and prayers, it is a great blessing to know that James is in your hearts.

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!

http://www2.baylor.edu/baylorproud/2011/09/dallas-zoo-newborn-giraffe-named-for-cancer-victim-and-baby-bear-james/

Helpful Comments

Since my last post ended up being about things people say that tend to upset me, I thought maybe I should list some of the really helpful things that people have shared with me.  And of course, grief is different for everyone, so by no means does this mean that every person who grieves wants to hear these things.  It's deeply personal, so I really don't want to say these are exactly what you should say to someone who is hurting.  But for me, they helped!
(These are from the perspective of the person saying them)
  • I love James.  I love you.  I miss him. 
  • I'm so sorry that he died.  I'm so sad and wish that it hadn't happened. 
  • I'm keeping you in my thoughts and prayers.
  • Let me tell you about the one time James...
  • Acknowledging and remembering when hard days occur.(ie: I know today it has been 2 months since he died and I am thinking about you and James today.)
  • James is/was beautiful/perfect/amazing... (The tense thing still gets me.  It all seems so fluid now.  He is beautiful.  He was beautiful.  I still don't know what tense to talk about him in). 
  • I don't know how you feel, but I'd love to go on this journey with you.  Tell me how you feel and I would love to listen.  
  • When you are ready to share, I'm here to listen.  If you don't want to then we can talk about something else.  And I recognize that the feelings change day-by-day, hour-by-hour, minute-by-minute so it's ok to feel whatever you feel. 
  • You are not crazy.  It would be crazy not to feel like your world has been turned upside down. 
  • Never underestimate the power of a hug!
And of course these are not all of the great things that people have said or written to me.  They are just the ones off the top of my head!  And I am SOOOOO thankful for these comments.  They seriously get me through the day. 

Ok and how cute is the reindeer outfit?  James was 7 weeks old in
these pictures, and I just love the cuteness of the socks too!
I am also so thankful that my dear friends have completely understood that everything changes at any given moment, and are so flexible with me and my moods.  I have been blessed with amazing friends that know sometimes I need to cry, and sometimes I need to laugh.  And none of them expect anything from me.  No expectations.  They are just here to journey with me, however long it takes.  I really don't know how I got so lucky that I have incredible women in my life who truly go beyond the definition of true friendship. 


So a big thank you to all of you out there for reading my ramblings!  I know they are typically random....so sorry!

Tuesday, September 13, 2011

Received rather than Taken

Sometimes I'm not really sure what I should write about on the blog- I feel like the times that I feel like writing are the times when I am the most upset.  So I hate that all I write is depressing- so please know that I am not so depressing most of the time in real life!  Or at least I hope not....

I went to a grief support group today.  I'm not going to share about the other people in it for their privacy, but the leader said something that really spoke to me today.  She said that we all need to decide whether we believe that God "took" our loved ones or whether God "received" them.

Wow.  What a wake up call.  I have definitely been needing an attitude adjustment recently.  I firmly believe that we are able to choose our attitudes, and honestly I have been choosing a pretty bad one. Little things have been setting me off and making me spiral into a pretty mean and depressed person lately.  Isn't it funny how one small, insignificant remark that someone makes can just ruin your whole day or week?  I have been letting these little comments just take over in my head.

So I choose to believe that God received James into heaven.  I typically get pretty angry when people tell me that "God just needed another angel" or "It was God's plan" or "God knew from the day James was born that he would die on July 16, 2011."  Because in reference to the first response, God doesn't "need" anything.  He is, by definition, God, and needs nothing from us as humans.  Secondly, God didn't need to "take" James to fulfill some worldly plan to promote research or awareness or to make other people value their children.  Those are great things that can come out of James's death, but they aren't the reason why he died.  Thirdly, I just can't believe this one. I'll probably get alot of backlash for this one, and I know I am probably going to tick some people off, but I just don't believe it.  Because if everyone has an expiration date written on them, than what is the point of life? 

(I don't mean to offend anyone about these phrases- and if you have said them, I'm not calling you out.  I would just avoid saying things like this in the future to anyone who has lost a loved one because I think the general consensus from people I have talked to going through this that these sayings tend to do more harm than good.)




My friend Whitney, from high school, recently said (in response to something I wrote) that she wasn't sure whether "Everything happens for a reason" or whether "stuff just happens",  I don't know that answer to that either.  I used to believe that in the end, things worked out the way that they are supposed to.  But I don't know that it was true for James.  I certainly don't know that it is true for children in the Darfur region of Sudan who go to bed hungry and see their parents killed before their eyes.  I don't think its true for people who are murdered or die in car accidents- is that really how things work out in the end?  I don't know.

Maybe because we live in a corrupt world, we all do the best we can until we make it to Heaven.  And God receives us and maybe that's the end that works out.  So maybe the attitude I should have is that In the end, we are reunited with our loved ones.  The parts in between allow us to give light and make the time from when we are united with our Heavenly Father sweeter.  I don't know, just my random thoughts tonight!

 And as always, I know the pictures of James are random.  These were taken at the arboretum in February when James was almost 4 months old.  And the video below was taken when he was a little over 3 months old and he was playing with the piano in his crib.  Gosh, he loved that piano.  He used to kick that thing the entire time I was in the shower- which was great because I could take a shower and he entertained himself!  Please ignore my horrible accent- Oklahoma + Texas = quality entertainment. 

video

“Hope is the feeling we have that the feeling we have is not permanent” Mignon McLaughlin

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.

Thursday, September 8, 2011

Jinxed

Sometimes I think that I caused James's tumor.  Alot of times actually.  I tend to blame myself when things happen, and so I naturally have come to think that something I did jinxed James.

When James was born, I created a facebook album called "52 weeks of James".  I took a picture of him every week in the same chair to document how big he was getting.  I stole the idea from my friend Courtney, who did it for her son Isaac (who is the absolute cutest little boy).  I loved watching Isaac grow, and I thought it was just such a neat idea.  At the time I titled the album, I had a nagging thought- Was I tempting fate?  But I thought of course I would have 52 pictures in that album.  One for every week of his first year of his (long) life. 

I now go back and analyze those photos.  At which point did his head start to get larger?  Was it the camera angle, or was it the tumor creating the hydrocephalus?  Did he have a headache beginning in this one?  Did he constantly have a headache that I just missed? 

People asked me (way before James got sick) whether I wanted more children.  Most of the time my answer was that if I was so lucky to only have James, my life would be full.  Sometimes I said yes, but I really believed that if he was my only baby I would be happy.  I wrote before that I felt like my life was complete when he was born.  So did I jinx him from the beginning?  Did I somehow put all my hope into him and that's why he was snatched away from me? 

Did I jinx him by making him my world?

Over the entire 8 months of his life, I kept repeating to friends and family that I was so fortunate to have a healthy baby.  I knew that there were families all around the world that were suffering because their children were sick and there was nothing they could do.  I said over and over again how thankful I was that James was healthy.  Maybe if I had never uttered those words he wouldn't have gotten sick. 

Alot of people have emailed me telling me how James has affected their lives.  I'm thankful that since I can't change what has happened, that some good has come out of it.  But I would trade it all in a minute to have him back.  The truth is that I was perfectly fine with him not affecting anyone's life.  Anyone but mine that is.  And selfishly I wish that the whole world never knew him and that this afternoon we would be outside in the yard swinging instead of me sitting on the back patio writing this blog post. 


I opened his closet this weekend and saw the clothes hanging that I bought for him last spring.  There were all far too big for him- I was buying in advance for the fall season while the cute smocked clothes were on clearance.  There's an orange and brown pumpkin outfit.  A green "Gone Fishin" outfit with a little reel and line hanging off of it.  A Christmas outfit similar to the one he wore last Christmas so that this year's picture would match last year's.  The tags are still on- I hadn't even washed them with the huge container of baby detergent that still sits on my washing machine. 


I don't know why on earth I bought so many clothes for the future.  Clearly I had no clue about what was going to transpire.  Maybe I did jinx him by buying outfits for the future.  Stocking up on diapers that I have since given away.  Buying in bulk baby shampoo and baby wash.  I just never thought that there would be a time that it wouldn't be used. 

So the guilt sometimes just eats me up.  I don't know if it's normal to blame yourself or not, but I definitely do.  When I get to Heaven, maybe God will have the answers for me as to Why.  I just hope that me taking James for granted wasn't the reason.

Fox Channel 4 Story

video

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. 

Tuesday, September 6, 2011

More about Jamie the Giraffe

Well, I know that Matthew told the story of what happened Thursday, but I thought I would give my two cents as well.

My sweet friends at the press conference
First, let me express how incredibly grateful I am to all of our kind friends, friends of friends, family, blog readers, and complete strangers who worked so hard to fill out so many forms!  I am in complete and utter awe about the amount of forms that were mailed in to name "Jamie" after James.  I cannot thank you enough for taking the time to do this.  It is so heart-warming to think of all of those who thought about James to do it.  I am seriously just overwhelmed with gratitude.

Matthew and I with Scotty Landry,
the CEO of Make a Wish of North Texas
Secondly, Michael Meadows, who is the CEO of the Dallas Zoo, is one of the most compassionate, kindest men I have ever met.  He and I had the opportunity to speak a few times during this process, and he is nothing but gracious and warm.  I think you can learn so much about an organization by whom they choose the leader to be.  He is such a positive person and you can really tell that he treats every employee at the zoo with so much respect. 

So Friday night, after 5:00, I received a call from Michael Meadows telling me the good news about Jamie the Giraffe.  I think I was in complete and utter shock!  I had no idea that they would deciding the name that soon.  And then he told me that the winner of the trip had decided to donate it to Make a Wish so that a child with cancer could enjoy a vacation with his or her family.  Jeff Fehlis at American Airlines made that possible, and I was over the moon. 

Gregg Hudson, the Zoo's Executive Director unveiling the name
I don't know how I got to be so lucky that I am surrounded by the salt of the earth on a regular basis.  One reporter asked me how I felt about the winner of the trip donating it to Make a Wish.  I think my only response was that I wasn't surprised- throughout this entire process I seen the great kindness of people.  People's generous hearts have been so consistent to us during this process, that I can't be surprised by their very goodness anymore.  I am so thankful for it and this whole process has, in a way cemented my view that people are genuinely loving and good.

I wasn't supposed to tell anyone the good news- I called Matthew at work and he was elated.  I did tell my family and a few select friends....I am terrible at keeping a secret.  Plus, I knew that they would be so excited also!  (Tip- don't tell me secrets.  I am horrible at keeping them.  Just FYI). 

Gregg Hudson presenting us with a photo of Jamie and Momma Katie
And so that is how the announcement came to be.  We went to the zoo this weekend and took my Mom to meet Jamie- she loved her just as much as we do!  I feel a little obsessed with her.  Would it be ridiculous for me to go every day to see her?!  She is just the cutest thing. 
With Dallas City Council Member Monica Alonzo






Giving interviews

Watching our girl!

Gregg Hudson, Giraffe handlers, and Michael Meadows
We got to meet her handlers on Thursday at the press conference.  I asked about her personality- and the word the handlers used to describe her is "ballsy".  Love it.  She definitely rules the roost out there.  Sometimes she just stares off into space and then will randomly start running around.  She's a hoot. 








I'm thinking about setting up a picture gallery so that if ya'll go to the zoo, then send me a picture with your little one and a giraffe.  (Or you and a giraffe, or your friend/boyfriend/husband or dog).  That is, if someone can teach me how to do it.  Does that sound like a good idea? 

And if you are in Dallas, venture out to the zoo and see Jamie the Giraffe!  She's so adorable and definitely worth the drive! :)

Monday, September 5, 2011

The Top Floor

There is a place in the hospital where I used to go to pray. Not quite in the hospital, but on the top of the parking garage. The top floor of the Green garage, to be precise, and to avoid confusion with the blue and the purple garage. I took the stairs from the place on the fourth floor where the walkways intersect, one headed to the purple garage and still more distant parking, the other to the blue. The Starbucks is squirreled away there between the walkway and the Bright building, where the outpatient clinic for the oncology department that James would have gone to receive treatment if he'd ever become well enough to be treated. We toured it once, and I remember looking forward to a day when James would spend only his days and not his nights at the hospital.

I took the stairs from the walkways to the top floor of the garage in the morning, after I'd grabbed coffee, double fisting venti skinny caramel macchiatos past a steady stream of doctors and nurses migrating from the garages to the hospital, bleary eyed with coffee in hand. Some would nod to me in some sort of unspoken recognition, as with my uncombed hair and inevitably stained shirts I looked exactly like what I was, someone who lived at the hospital.

At the top of the stairs I walked outside of the glass vestibule and its chilly air conditioned bubble onto the bare concrete roof of the garage, towards the edge of the railing where I rested the cups of coffee. The view was- is- spectacular, the whole Dallas skyline. The building I work in, all the others, gleaming in the sun. It was warm as well, a welcome respite from the sterile coldness of the hospital. More importantly, it was quiet. Of all the memories that have stayed with me from the hospital, one of the most enduring is of how loud the place was. Even with nothing going on, the constant whir of instruments and the steady beeping of vital signs never ceased, there was never a truly quiet moment. No one bothered to park on the top level of the garage though, so I could always count on it to be silent.

It was here that I prayed, removed from the air conditioning and the noise. I looked towards the skyline or to the interstate and begged God to heal my son. Some days I cursed him. I never close my eyes when I pray, I just think and stare into the distance, as if God will suddenly decide to stare back at me. The ritual of closed eyes and bowed heads always seemed strange to me, even as a child I couldn't imagine why God, if he was everywhere, need only be deferred to when I paid attention to him. Eyes wide open, I'd look around at those in prayer, wondering at their devotion.

Prayer does not come naturally me. There are some people for whom prayer is effortless, a natural effusion of their thoughts, feelings, and devotion. I am not one of those people. Even as a boy I remember being bored in Religion class in Catholic School, patient enough to learn the words but confused and annoyed that anyone would want to sit and say a rosary- sometimes more than once. I certainly did not have that kind of patience. Did God reward repetition? Nevertheless, like any good Catholic, the words of the Hail Mary were often used as a prophylactic litany against all manner of fears, from bad dreams to a call from the principal's office. Now and at the hour of our death, Amen. So it was strange to me to make prayer part of a conscious routine, a regular stop between the Starbucks and James' room, steaming coffees in hand. I do not remember the first time I went, or how the routine got started, or even why I decided I'd explore the top floor of the parking garage in the first place, it simply crept into my days.

I never stayed long there, never long enough for the coffee to go cold, just long enough to utter a few words and to pray for the life I wanted James to have, the one I hoped God was somehow preparing him for. The family I hoped he'd have, the teenage rebellions I hoped would be less damaging than my own. I remember thanking him when James' surgery was a success, and asking for more successes, small ones I hoped would build into larger ones. I ended each visit with the same request "Protect my family" I asked, over and over again.

Since James died, I have often asked myself why God didn't listen to me. I have wondered why he let my boy die. Why we lost him so suddenly, before we even had a chance to register at the outpatient clinic or anywhere other than hospice. James' time in hospice was even abbreviated, our schedule with the nurse never materialized, James died too soon for schedules. I have been angry.

The more I reflect on those prayers though, the less angry I am. There, alone, I could pour out my fears, my regrets, and my guilt. I could do something for James in praying for him that I never could do in the hospital, no matter how hard I tried, and just ask for him to be well. You can't ask a doctor that question- their concerns and your questions are more granular, what to do about the extubation or the meds James is getting. Wellness is part of a grander plan, one you are aware of but has very little to do with your day to day. Perhaps God didn't answer me as I hoped he would, with a healthy James. He knew of course, that James would never be well again. But he let me talk it out, there on the roof of the parking garage with my coffee. He let me bargain and wheedle, ask for miracles and cures. He gave me that place, away from the relentless action of the hospital to collect myself, and to talk to him. He did not answer my prayer literally, but he protected my family. He took James before he suffered through chemo, before spinal taps and IV drips of toxins became routine, knowing they would never work. He let me release all my fears, my guilt to him, so that I could care for James when he needed me most. He gave us all the support we could ask for, we were swarmed with people who cared. So I am not as angry as I was. I don't think I wasted my time at the parking garage. If anything, I am glad I went. I'm glad I prayed. Sometimes though, I still wish I'd received another answer. In a lot of ways, I'm still waiting for one.

Thursday, September 1, 2011

Jamie the Giraffe



Above is a picture of the sign that the zoo unveiled today announcing Jamie's name. Although we knew that we had a lot of support and we'd received a lot of positive feed back throughout this entire process, until we found out for sure we never quite believed that it would happen. Thank all of you for your support and for all of your entries! The Zoo received over 5,000 entries for the contest and 71% of the entries it received were for Jamie or some variation of James. I cannot express in words what this means to us. We never expected this kind of response. The Zoo told us they received entries from all over the country, and it is extremely gratifying to know that all of you were thinking of James. I can only imagine how thrilled James would be to learn that he had a giraffe named for him, even if I'm sure he'd be disappointed that it wasn't the kind of giraffe you could chew.

The Zoo invited us to the ceremony today where they announced the name and were very accommodating. We'd been to the zoo before, but in the morning it is largely empty and takes feels different, more open. The animals are more active, and the giraffes are everywhere. The Giants of the Savanna exhibit is interesting because, as I learned today, it is the first and only place in the United States where Elephants, Ostrich, Giraffes, Zebras, and Impalas roam freely together. It's really unique, something we had no idea about when we first brought James. We were able to feed one of the Giraffes, though Jamie stayed just out of our reach- she's a little short for the feeding exhibit yet. I'd wanted to go to the zoo before to see Jamie but I couldn't bring myself to, too many memories. The Jeep where we took the picture of James that used to sit atop this blog, the Penguin exhibit where he expressed such wonder at the animals flitting past him, and of course the giraffes. He loved their long black tongues, probably because they were so unexpected, he seemed especially impressed at how quick they were. Going back today was better, helped along as we were by the staff of the zoo. The event reminded me yet again that the joy in James' life matters more than the grief of his loss. The staff of the zoo was incredibly gracious to us, even letting me into the employee parking lot when I couldn't figure out how to work the gate, and we're glad we had the opportunity to meet them, from the CEO to Jamie's handlers who informed us that Jamie, like James, is far from shy. Jamie likes to run right at you, and she's not afraid to jump between the different ledges of the zoo- even if giraffes and jumping don't really mix. We felt very welcome.

We were also very pleased to find out that the person who won the trip- selected at random from all of you who sent in the name Jamie- chose to donate the trip to the Make a Wish Foundation. Thank you, whoever you are. Even though James was too young, and sick for too brief a time to take advantage of this foundation we hope that another family faced with losing their child will have the opportunity to make some beautiful memories in San Diego. Our last few days as a family with James, our last few hours, are memories we will treasure forever. It is fitting that another family get the opportunity to do the same. While we're at it, thanks to American Airlines for donating the trip. This totally makes up for the time you lost my luggage.

Grief, by its very nature, is a largely solitary experience. It occurs out of sight and mostly out of mind, stolen moments and tears in the privacy of your home, behind closed doors or tinted windows on the freeway. The direction that loss tugs is always inwards, towards memories slowly growing stale and experiences that cannot be recreated. The tendency is to dwell on these moments, and to remove external influences for fear that the new will drive out the old, and rob you of your memories. The narrative becomes repetitive, stuck in the minutia of what once was and reflecting upon what is not. Turning outwards often becomes a source of pain, a grim reminder of loss. The world beyond is lacking, and the absence of what you most want, of what you yearn for, becomes keen. It is absorbing, consumptive of your thoughts and time. It's a feeling that is hard to translate into words, because often it produces few words, just raw emotions that refuse to be properly articulated. Since James died, events like this, the response to his fund, and a hundred other things remind us that we are not alone, that looking outside does not need to be a source of dread. Knowing that James lives on not only in our hearts but in so many others is a reminder that our grief, and our son, are not without purpose. That is not to say that grief cannot still be lonely- it is- but that's not the whole story. It doesn't have to be. There is something more, a legacy that James left that exists beyond us. Thank you for that, and for Jamie. As always, thank you for your thoughts and prayers

Introducing....


Jamie the Giraffe!!!!!!!

More details to follow :)