Monday, October 31, 2011

Winston and Maggie

First,  thank you so much for all the kind comments, texts, emails, and facebook messages celebrating James's birthday.  I am so thankful that you all remember him and his birthday.  I appreciate the fact that so many of you are celebrating his life.  Thank you from the bottom of my heart.

So, yesterday has come and gone.  Matthew and I went to the zoo and saw Jamie with some sweet friends.  I know most of you are sick of hearing this, but I have the greatest friends.  Truly.  Some friends I have made this past year, and others I have known for 15 plus years and everywhere in between.  They are amazing.  And then my Mom was in town also, and she and I went out to Denton to take Jamesie some balloons.  So thankful for my Mom who lets me cry and be angry and then be happy and sad all within a 2 minute time-frame.

I've been a little preoccupied with myself lately, and it hit me not only did I lose my only child, but my parents and Matthew's parents all lost their only grandchild also.  My mom went from being GiGi- which she still is to the doglets- to not having a grandson to play with.  James just loved my mom so much.  Between my mom and my brother, they could have James laughing when he was in the hospital in no time.


This is my mom and James, with James laughing at my brother.  I think he was doing funny faces or something! 


James and Maggie.  Kisses from Maggie are a rare occurrence. 


James and Winston.  Winston gives everyone kisses. 

Speaking of the dogs- I feel like I should talk about them for a minute.  The pugs are Winston, who is 6, and Maggie, who is 4.  Matthew bought me Winston for my birthday our senior year in college.  I adopted Maggie in 2008 right after Matthew had left to go to Albuquerque for the summer to do a clerkship.  In retrospect, it was terrible timing, and the summer of 2008 I used to refer to as the worst summer of my life.  And then Summer 2011 happened and it pales in comparison.

Winston and Maggie are best friends.  Winston used to be the alpha dog, and then Maggie came and took her rightful place.  He was never that great at the alpha dog part anyway- he never had a chance.  Winston is definitely show-quality, slightly flamboyant, possibly autistic(but definitely high-functioning) and has a love of large, black, male dogs.  Seriously.  Maggie on the other hand is loud, has hip dysplasia, territorial, and is a tease.  They are a lot like Will and Grace. 

So when I was pregnant, I worried about how Winston and Maggie would take a new baby.  Maggie barks if any baby cries on the tv, and Winston's "spot" is my lap.  I bought a baby doll and practiced holding it and keeping the dogs away.  It didn't work.  But as soon as we brought James home they settled down.  And the bigger he got, the more they liked him.

video
And oh, how James loved the dogs.  He thought they were hilarious.   This video is one of my very favorites.  You have to watch it.  And I never say that.  But it's just so adorable. 

So I miss being able to play with all of them.  They were such a good team.  And now I don't even know if Winston and Maggie realize he's gone.  I know on some level they must know.  They don't go into his room ever, even though the door is open and they used to spend so much time in there.  Winston used take any opportunity to take a nap in the rocker.  It's just so strange to me that they don't even walk in there from time to time.


And I feel like I can't explain to them what has happened.  Just like I couldn't explain to James what was happening.  So I'm at a loss of what to do.  Winston has regained his place on my lap.  Maggie, who had stopped barking at the babies on tv, now barks at anything and everything.  Maybe they know, but don't even know what to do.  I guess that's how I feel, so I can't really blame them. 

Friday, October 28, 2011

Happy Birthday, Baby

Precious Baby,

This is not the letter that I thought I would be writing a year ago. Oh how I miss everything about you- your sweet smiles, your hilarious laughs, your high-pitched talks and hungry cry.  I miss your perfect little thighs with hardly a chunk on them.  Your tiny toes that we used to make Valentine's Day cards.

I hope they are taking care of you in Heaven.  If I thought for a minute that they weren't I would just hop on the next bus up there.  I'm so sorry that I'm not there to rock you or tuck you in at night.  Do they know that you sleep in a sleep sack?  A cotton one in the summer, but now it's gotten cold so hopefully they have switched to your fleece ones.  Surely they know that, right?

I hope one of the many mommies and daddies have made you a cake.  And they hopefully made a tiny smash cake for you.  Oh how I wish I could see you smash that cake!  I remember at your friend Chloe's birthday party I let you try a little bit of cupcake even though you were only 7 months old and I shouldn't have.  You loved trying that frosting!  If I had only known what was coming I would have let you eat the whole thing. 

I wonder if you are walking now- or in Heaven were you already able to walk when you got there?  You were so mobile.  And always so ahead of your milestones.  I thought surely you would have been walking well before you turned a year old.  We used to "walk" around the house all the time.  With you holding my hands, and me standing above you.  You thought it was so much fun to be able to get all the way down the hall to your bedroom.  So fast you were!

I haven't moved your toys.  Your room is exactly the way you left it.  I just keep hoping that maybe one day I'll wake up and you'll just be here again and everything will go back to normal.  There's still so many clothes in bigger sizes that would fit you now.  It's all here, and the only thing missing is you.

I'm surprised every morning when I wake up.  I always think that surely my heart has broken so much that God decided to take me in the middle of the night to be with you.

I miss you so much James. I can't believe that we aren't spending your birthday together.  The first of what was supposed to be a lifetime of birthdays.  I went today to order you some balloons- One big Happy First Birthday Balloon and 8 small balloons for the 8 month birthdays we got.  I don't know what else to do.  It seems silly to get you a cake.  I guess I'm hoping that the balloons will fly high enough tomorrow that they will somehow reach you.

I hope your angel baby friends have fun at your party.  I've met so many of their mommies that are still here.  We all miss you so very much.

Happy Birthday, sweet baby.  A year ago, my life changed in the most remarkable way. I got to meet my favorite person!  And for better or for worse, I am so thankful that I got to be your Mommy.  You are worth every hour of labor, every stitch across my stomach.  You are worth every tear, every smile, every cry.  Even if you had never so much breathed one breath on this Earth, you would have been worth it.  And the fact that I got you for 8 and a half months?  Never has anyone been so lucky as I.

I miss you.  I love you.  I can't wait to see you again.  And the next time we see each other, we'll never have to be a part again.  Happy Birthday, love of my life.

Tuesday, October 25, 2011

Jealousy Issues

Ok...so you all like me because sometimes I am totally honest, right? 

I'm pretty jealous right now.  I'm jealous of all the people who have perfectly healthy babies.  I'm jealous that they get to wake up in the middle of the night to their cries.  I wake up in the middle of the night to emptiness. 

I'm jealous of the people who complain about their children.  Who are so tired of their children asserting their independence and personality.  And I know it has to be hard to be a parent of a 2 year old.  But I would give anything to know what would have set James off in a temper tantrum.  And I know it's silly, but I wonder what it would have been.  Would it have been what he wore?  Or a special toy?  Or shoes?  What would he have been particular about?

I'm jealous of the people who get to blissfully unaware of pain.  I know everyone has their share of problems, but there are always people you meet who just seem to have perfect lives.  They have perfect jobs, perfect kids, and it all seems to be  great.  How do you get that life?  I guess I wouldn't even know what to do in a life like that.

Ok- and I told you I am on a roll with the jealousy- I'm even jealous of breast cancer research.  I know, weird.  But I was trying to do some research on rhabdoid tumors and whether they could be caused by an epigenetic response (basically if something like nutrition could cause a change in the proteins on top of the DNA that would cause the change in the gene).  There is so little research.  So then I was trying to do some research on breast milk and whether that has an effect on your DNA.  I searched probably 15 scholarly journals for "breast milk".  Not a single article or study came up about children.  However, thousands came up about breast cancer.  And I don't think there shouldn't be research about breast cancer- I just am jealous that we know so little about AT/RT and I wish we knew more.

I'm jealous of people who get to have normal lives.  Who get to go to Gymboree.  Who get to play with their kids.  Who get to hear "I love you Mommy", even if it is few and far between.  Who get their own version of "Jamesie kisses". 

So I was watching the Little Couple tonight (Disclaimer: I watch terrible reality TV.  It's a problem that has unfortunately gotten worse over the last 3 months.) and they were talking about doing genetic testing on the 2 embryos that will be transferred to their surrogate.  They didn't want to go through a pregnancy without a good chance that their child(ren) would survive. 

And I know the pain that happens when you lose a child first hand- its awful.  And I'm not here to say whether deciding that is right or wrong for them.  But knowing what I know now about what all would have happened, I can't imagine my life without James a part of it.  Even though he's gone, he is still very much a part of my life.  But then, also knowing what I know now, I would hate for him to have to suffer.  As a parent, you never want your child to suffer. 

Maybe this experience has shown me that every decision is not always black and white.  Most are shades of gray. 

I know I am so random.  This week is really rough.  If you have an extra prayers, I would be forever grateful if you would send them my way. 

Last year when the Rangers were in the World Series, James was 1 day old and we watched the game in the hospital.  The weekend he was born we watched the Rangers, the Baylor Bears, and the Dallas Cowboys.  We watched so many sports in the hospital that I even thought at the time that this year we might have a "Tailgate" themed party and just have football on all over the house. 



Oh, how I wish we were having that party this year.  That we were the ones blissfully unaware of just how painful life could be. 

Friday, October 21, 2011

Looking for the small blessings

Well, it's clear I'm not sleeping well.  Since I typically start blogging about 1:00 in the morning, you can tell I'm not sleeping!

In fact, I think it's pretty obvious I'm not doing so hot these days.  But- I'm trying to be honest about it.  My friends know- we're calling it my funk.  One that I can't seem to get out of.  I am so thankful for sweet friends that allow me to be in a funk.  And accept me how I am.  And understand that it's ok to be in a funk that it (hopefully) will not last forever.

My aunt told me a few weeks ago that she read in a book (she thought it might have been Elizabeth Smart's book) that Elizabeth began to look at the small blessings in her life.  And little by little she felt better.  I've been thinking alot about that lately.  Currently, I am up to being thankful for coffee.  That's about as far as I get.

So I am way behind blogging about all the ways that people have been blessing me- I have so many half-written posts, but one thing happened last week I have to share.  On Friday I went to Waco to visit some of my old (former) coworkers.  (That was for you, Candice!) On my way to Waco, I stopped by Hamilton, TX.  My sorority sister, Ashley, and her husband own a monument company.  They are so kind, and are just being so supportive and understanding throughout this whole headstone process.  As Matthew said earlier, it's not something that you even conceive of doing until you have to.  I'm so thankful to know people who can guide us so lovingly through the process.

After stopping in Hamilton, I drove to Waco.  I, of course, got behind some army convoy on a 2 lane back road, and it ended up taking me FOREVER to get to Waco.  Best laid plans, right?  I was so excited to get to Waco because the day before, I received a package.  An anonymous friend had given a brick in James's honor in front of the Bear Habitat

So when I got to the Bear Habitat (formerly the Bear Pit for all of us old people), I was greeted with this:



When I received the package last week, I probably cried for an hour.  I was just so overwhelmed with gratitude.  Unfortunately, I'm not allowed to find out who it is from!  But I am so glad to have a little piece of Jamesie on campus.  Baylor's campus is one of my absolute most favorite places in the world, and James would have loved the bears.

It's funny, because I've been thinking about putting that exact phrase on his headstone (or on a bench we are going to put near his grave).  I know I'm a little obsessed with that poem, but I just love it.  Nothing else seems to sum up how I feel.

Once again, I am so thankful for friends in Waco (and other places!) that can hang out with me even through my funk.  I just think that it is true, you are bound to meet incredible, amazing people no matter where you go.

I'm also thankful for school.  I honestly don't know what I would do if I didn't go everyday.  It makes me (halfway) function, which is good.  I'm learning a ton, and my classes are going well.  I'm starting to think about the MCAT which is terrifying.  It looks like I will take it in May, which doesn't seem as far away as I thought it was!

Ok so maybe I've gotten a little farther than coffee on my blessing list now.  Thanks for going on this journey with me- right now it's an up and down kind of ride.  And hopefully I don't mean that in a bipolar or schizophrenic way! 
And to close, a picture of my baby.  A terrible quality cell phone picture, but I love it.  He is almost exactly 5 hours old in this picture.  I love this little wrinkles.  Such a perfect, sleeping baby.  It was like once I got him on my chest, he knew that's where he belonged.  And I knew that was where he belonged.  Heart to heart.  

Monday, October 17, 2011

Memorials

Bahama Blue. Blue Pearl. Dakota Red. North American Mahogany. Finland Red.

They're the names of tombstones. Types of granite to be precise. Bahama Blue is wavy and a bit less lustrous. The others are dappled in a variety of colors from dark blue to pinkish red. They look a bit like the granite you might have in your kitchen, gleaming slabs of rock straight and upright, with a six inch base and an eighteen inch pedestal by rule. If you take the samples, you can wander the cemetery and look for matches. You'll find some. Flat grey is far and away the most popular, a faint shimmer distinguishing it from concrete. The lighter pink comes next, scattered amongst the grey. Less common are the darker reddish colors, dappled with more gray. Not quite red, more maroon. Perhaps one in twenty. Rarer still are the blues, perhaps one in one hundred. The waves of the Bahama Blue are particularly uncommon, we didn't see any. It's an odd sort of shopping experience, walking samples from monument to monument, trying to find a match. One group of four headstones in North American Mahogany contains an entire family, two boys and their parents. Only one has passed, a young boy about a year old. It seems odd that they wanted to bury his brother there as well, until you realize they were twins.

I never gave much thought to what my headstone would look like. I assumed my children would pick it out, along with my grave, sometime after I died. I never thought of picking colors, or had time to parse out the differences between ordering domestic granite or international granite. I figured I'd be past caring by then. I am 27 years old and until recently felt comfortable allowing a few decades before the question entered my decision making.

I never thought that Kara and I would ever have to make this decision for James. Even after James died, the reality of decisions like that always lacked context. You simply have no knowledge of the process. After walking around the cemetery for a bit before dusk, we settled in on one of the blues. It will take a while to get in. We have time to wait.

The reality of course is that all of these decisions become necessary. Despite my best efforts to protect it, the flimsy sheet in a plastic sheath providing James' name and dates to the public has faded completely, burned out by the sun and latent moisture. I took it apart and put in a new placard, his name and dates in my almost illegible scrawl. It won't last very long either. Ants made a home around the concrete base of the vase the cemetery provided for flowers. I killed them all, but they'll come back. The grass grows every week. Three weeks ago the runners were just beginning to reach across the bare ground. I thought about stopping them. I didn't want to believe it had been that long, I didn't want people to think of James' grave as an old one, something in the past. The wound less fresh than those of graves with freshly tilled soil. I decided against it ultimately, at least in part because I couldn't think of how I'd explain it to the groundskeepers. Now the grass is criss-crossing it, threatening to erase entirely the bare earth. James needs a permanent memorial, one that can withstand the sun and the rain, one the ants can't bury and the grass can't cover. I just realized I wrote "son" instead of "sun" every time in this paragraph. Go figure.

Part of the reason why is the same reason the grass growing bothered me. I'm worried that without something there, without something permanent, people will forget. That without some carved chunk of stone with his name and age etched into its side people won't remember that James Camden Sikes was there. That they'll forget about him entirely. That after I die, Kara dies, and everyone who knew him dies it will be as though he never was, and never mattered. I want people to know, even if the only people to see it will be people like me, shopping stone samples in the cemetery. I want them to see his name and age and wonder about him, think about him. I want them to wonder.

I remember as a boy going to visit an old family cemetery in Sikes. In a neat little row at the front were James Franklin (my great x4 grandfather), his wife Susan, James Warren Sr. (my great x3 grandfather) and his wife Sarah. Between them is Clarence Lester Sikes, a nine year old boy who died over a century ago. I remember wondering what happened to him, how he found himself there between his father and grandfather. A century from now, I'd like someone to wonder what happened to James Camden and James Matthew. I don't want them to forget him, I don't want the world to forget, no matter how infrequent the thoughts might be over the years. James was too important to forget.

On one hand I know that these thoughts are silly. No one is going to judge James' legacy by the color or the quality of the granite on his headstone. At the same time I find them very comforting. This is yet again something we can control, after so many things that we could not. Still, whatever words, inscriptions, or carvings I think to put on the stone won't be enough. They won't capture James' personality or his delightful smile. They won't carry the sound of his laughter. For memorials like that we must depend on other sources, on the people that knew and loved him. The people whose lives he touched. The stone is just a marker. It will never be a legacy.

Sunday, October 16, 2011

Lord, Please take care of my baby

Lately I have been thinking about the various prayers I have prayed over the last year.  This time last year, I was (what I now know to be) 13 days away from welcoming precious Jamesie into the world.  My prayer was "Lord, please let James decide that today he needs to be born.  I am so ready to meet him, and you know that I cannot stand to be pregnant another day!" Or something to that extent. 

The day he was born was scary.  James was making D-cells and his heart rate dropped from 150 to below 60 bpms with my 5 minute long contractions.  When the 20 ish medical people came rushing into the room to run me down the hall for my emergency c-section, my prayer was "Lord, protect my baby.  Please just let him come.  Please just let him be ok".

As the doctors introduced me to the NICU team that was there just in case, I prayed, "Lord please don't need the NICU team.  Please just let him come to me."

And once he was here my prayer was "Thank you Lord.  Thank you for a healthy, beautiful baby.  He is my perfect blessing."

So my various prayers throughout the middle part of his life focused on his development, his happiness, that I could be a good enough mommy for him.  That James and I would be taken care of, that we could get through anything.  We had some rough spots over the middle to get through.  But I was so thankful for him.  He game my life meaning. 

When James got sick, my prayers were, "Lord, please make my baby better.  Please stop his stomach from hurting.  Please let him get over this bug"  And when I found out that it wasn't a bug, that it was a tumor, it was "Lord, please give us the absolute best doctors.  Give us the best nurses.  Please let them get all the tumor.  Please don't let it be a rhabdoid".  And then it was a rhabdoid. 

So then I prayed, "Lord, thank you for allowing the doctors to get most of the tumor.  Please let the chemo work.  Please, please let the chemo work".

And then we never got to chemo.  And so my prayers changed.  Instead of "God, please heal my baby", they become "Lord, please take my baby.  Don't let him be in pain anymore.  Please don't let him suffer any longer than he has to. Please, just don't let him hurt anymore."

Looking back, I can't believe I prayed that.  I know that it was the right thing to pray; I still can't fathom it.  I can't believe that I was in a place where God receiving my baby was my hope and prayer. 

So now my prayer is "Lord, please take care of my baby.  Please let someone rock him when he needs to be rocked.  Let someone play with him when he wants to play.  Let someone love him as much as I love him.  Please make sure he knows how much I love him.  Please tell him how much he was wanted.  And how I so much wish I could be there with him.  Just take care of him until I can. Please."

Surely there are special people in Heaven that take care of the babies until their mommies get there, right?  (And I know everyone keeps telling me to read Heaven is for real- which I did.  And sorry to disappoint everyone but I hated it.  No judgment- if it helped you, great.) 

Sometimes I think about why some people get miracles and other people don't.  And honestly I'm jealous of the people who do get them now.  It's not that I don't want them to get their miracles- because I absolutely do- I just wish that James had gotten one too.  I wish I had gotten one. I think it's just another part of life that I just have to accept- there doesn't seem to be a reason why or why not. 

I didn't struggle with the Why question at first, but it is definitely something I think about alot more now.  It was so easy at first to just say that sometimes things just happen and you have to accept them.  But accepting them is so hard. 

It almost seems harder now than it was during those days at the hospital.  I think at the hospital I still had hope, I still had a purpose.  Now, I feel purposeless.  And when James was in so much pain, it was, in a way, easier to accept that he was going to go be with Jesus and he wasn't going to hurt anymore.  I don't feel like I even had time to think about what life would be like without him here.  What that would look like.  What that would mean.

 My perfect angel baby.  He was taking a nap at the arboretum one sunny, Sunday afternoon.  He was just so precious.  So perfectly precious. 

And so now I can look back and doubt every decision.  At times I can block out the pain he was in, and just remember when he would laugh or smile at something funny.  Or play the "Let's put my hand in Mommy's mouth" game.  Or sing Baby Legs or one of our silly sound songs that we made up.  And then it all seems so very cruel. 

So I think the only thing I can hope now is that God is taking care of my baby.  Surely, out of all my prayers, that will be the one he will choose to answer, right? 

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!

Sunday, October 9, 2011

Time

James lived eight months and seventeen days. That's 257 days. Today marks the one hundred eighth day since we were first admitted to children's. It is seventy seven days since he died. Life in the hospital was very brief relative to either of those periods, James spent just about twenty nights in the hospital between the time he first became ill and when he died, tucked into different floors and different rooms. A dizzying array of B6, C9, C11, PICU, C9, C10, PICU again. Tense days full of hurry up and wait, ventured opinions and slowly forming conclusions.

Sometimes, I still dream about it. I wonder if you would call them nightmares. It is the morning and I can't get James to wake up. I am begging for him to wake up, shaking him, calling his name, calling for help. No one comes. I go into the hall and make laps around the circuit. The nurse stations are empty, the on-call boards blank, without any of the cheerful flowers the nurses would draw. A mural welcomes you to the floor on each lap, splashes of color to break up the hospital's familiar pattern. Each floor has its own mural- the layout remains the same. No one is there, and a panic rises in me. I wake up, and still there is no one to help James.

The days pass with a different cadence now. When I make an appointment, I can be confident it will happen about when expected. There is a certainty that was never present in the hospital. The days are more regular and less varied. There is more predictability, but the surprises gone are about half and half. Bad surprises,like your son has cancer and needs an MRI today, are largely gone. The worst has already happen, there are no more horrible futures to contemplate. With them go good surprises too. Which of his teeth will come in next, what will his first word be? When will he walk? The watch for milestones ceases. There is simply much less to look forward to.

The days now have a regular, predictable quality. There is much less to update, and still less that is actually interesting. As much time as we spent terrified in the hospital, I still sometimes miss it. We still had hope. We still had things to look forward to with him. By its nature, the hospital is a place that suggests you still have options, treatments, hope. There is the opportunity for life however tenuous one diagnosis or another might make it. Away from there, here, is in many respects an admission that there is simply nothing left to be done. James is gone, and there's no hope of return in this life. I never thought much of heaven before. It seemed abstract to me, a reward without context. I still don't know much about it, but I know what I want out of it- James. I want to see my son again, and watch him grow into the man I'd hoped he would become. I now have context. There is hope in that, but an abstract sort, the kind that pales in comparison to the reality of you dead son's grave, or the crib sheets you wonder if you should bother changing, because of the dust that's gathering.

Today looked a lot like yesterday. Work, sleep, leisure crammed in the margins where possible. Tomorrow will look much the same. The days are more numerous but less important. I think of all the things I wrote in those daily updates, everything that happened. Some days I would write an entire update only to forget a full chunk of the day, hours and events that were sometimes the most important thing that happened. That time is compressed in my mind, a month that felt like a year. There is a huge divide in my life between before and after, and I cannot believe it. A few days after James died I remember I received a calendar reminder for some discovery deadlines for discovery I served a few days before James got sick. I remember looking at the note on my phone and just being shocked that 30 days ago my life was normal like that, and that 30 days later I was finished burying my son. It felt like much longer.

Some days are better than others. Some days I see the positives. The time we were blessed to spend with James, how honored we were to be his parents. He was our perfect blessing and we were lucky to have even eight months with him. Some days I am angry. Other days, I'm just trying to get through the day. Today was a good day. I found a set of James' newborn pictures in my desk. These discoveries are always a bit sad, but I like to look at his pictures and see him smile. He was such a happy boy. I couldn't have asked for anything more.

Thank all of you for your thoughts and prayers.

Tuesday, October 4, 2011

Late Night Thoughts

Most days I think to myself, "How was I ever a mother? Most days I feel like I can't even take care of myself, so how did I ever take care of someone else?

I'm crying alot now.  At the beginning (or the end, I'm not even sure what is the beginning now.)  Maybe I just mean right after James died, I hardly cried at all.  Now I cry several times a day.  Sometimes in the car.  Sometimes at home.  Never in class, though there are several times that I have had to bite my cheek so hard to keep the tears from coming.  You know what I mean?


Last week in genetics we were studying gene deletions.  That's what caused the brain tumor.

22q11.2

This is a diagram of what Chromosome 22 looks like.  (One part of the pair I mean).  22 stands for chromosome 22.  q means the "long" arm of the chromosome.  If it were on the short arm, it would be a "p" instead from the French word petite.  1 is the region, and 1 is the sub region.  2 is the band.  Do you see 22q11.2?  Do you see what a tiny part it is?

There are 1.092 genes located on chromosome 22.  There are 32,185 genes located in all 23 pairs of chromosomes we as humans have. 

I still cannot believe because of one tiny gene deletion my baby died.  I can't fathom it.  It still seems impossible.  Out of the 32,185 genes that we know of, why did this ONE have to be deleted?!  Seriously blows my mind.

Sorry for the genetics lesson.  I just find this fascinating.  Lots of cancers are caused my various gene deletions and mutations.  Several brain cancers, some breast cancers and a host of other cancers can all be traced back to gene deletions.  The gene deletions are usually tumor suppressors that make your cells stop growing when they are supposed to.  The basic difference between a cancer cell and a regular somatic cell is that the cancer cell doesn't stop multiplying when it should.

So I guess I have been thinking alot about gene therapy and how do you stop genetics?  It seems to me like you find a way to fix the genes, you cure cancer.  Pretty much all cancers.  Should be simple enough, right?

Ok enough about that.  I feel like all my blog posts are my random end of the day thoughts that are swimming in my head.

This month is going to be a hard month.  I always knew October would be hard.  I keep getting this magazine in the mail- It's called like "First Birthdays" or something like that.  I've received it 3 times now.  Everytime I get it in the mail I get all upset.  The other day there was a Parenting magazine, the First Birthday magazine, and a Pottery Barn Kids in the mail.  Rough day.

My birthday is on Saturday.  I remember last year I was just praying that James wouldn't come on my birthday- he could come any day but that day.  Now I just keep thinking, if he had come early, (or on time), would I have been able to spend an extra week or two with him?  Or would the tumor have taken him 2 weeks earlier?  Or if he had never come out, could he just have stayed safe in my belly forever?  Because I would gladly keep him there.  I'd stay pregnant the rest of my life if that meant that no tumor ever came to get him.  Which is crazy to think, I know, but it's that bargaining stage.

So now my birthday is coming and the last thing I want to do is celebrate.  I want to curl up in a ball.  No one could ever give me what I want.  It's not possible.  I want for my world to make sense.  It would make sense if James was here, or if I was with him.  Apart doesn't make sense.  Apart isn't right.  I want my baby.  I miss this sleeping face on my chest, taking his morning nap.  I miss feeling him breathe in and out, and making tiny little sleeping baby noises.  I miss my precious baby in my favorite polo- the one I buried him in.  This is what I picture when I miss him the most.  Always in this little orange and blue stripe polo that matches the one I bought for his daddy several years ago.  That's what I miss the most.  The perfect, sleeping baby who fit so perfectly on my chest, so perfectly in my world, who made my life complete.

Sunday, October 2, 2011

Identity

Kara signed me up for these e-mails. They're called "grief share" and they are daily. The theory is that you will receive one of these e-mails for a day, 365 in total, and at the end of the year you will have learned something about your grief. Perhaps something about yourself. I am on day 11. I started late. I wonder when I get these e-mails what Day 200 will look like. I wonder about the day when day 366 comes and no e-mail arrives. Does that mean my grief has ended? Am I finished? Of course that's silly and not at all what even the e-mails suggest. I think they know very well that a year is arbitrary, in much the same way as a decade would be. Our eight months and seventeen days was. Numbers without meaning, timelines with no context.

Almost one hundred days have passed since I first posted in this blog "Day 1" before we knew anything about rhabdoid tumors, when all we knew was the white mass on James' MRI staring back at us, a frame with the title "Seven Month Old with Brain Tumor." The Doctor stumbled on the words when Kara pointed out the tumor. There was no prefatory instruction, just "Is that a tumor?" and "Yes." I remember how committed we were to not even googling rhabdoid before we knew if James had it. Even when he was sick, we had so much hope, and James was always so happy. Why shouldn't we have hoped?

They say it takes a million cells to show up on an MRI. I wonder all the time when that first cell was born, when something wrong first happened. I wonder if there was a subtle change I missed in his behavior, if there anything at all that should have let me know that MRI shot was coming. This is foolishness of course, no one predicts a rhabdoid tumor. I know that. I do not always feel it.

Today's e-mail, Day 11, reminded me of that. "Losing a part of yourself" was the title. A man whose wife died described that he felt like someone had sliced him in two with a samurai sword, that he didn't know who he was anymore. For me, the sensation is different. Less cut in half, and more hollowed out, as if someone took a knife and scoured my chest cavity, a neat little hole where the core of me used to be. The center is missing. The sensation is one of absence. Without James, free hours reappear. There is no impediment to working long hours on the weekends, no obstacle to hours of television that you never bothered to watch before. You could develop hobbies, if only you cared. All the time serves no purpose but to remind you why it's there.

I do not always agree with the e-mails. Sometimes they catch me at an off time, or I don't care for their tone. Today's though, fit perfectly. I do feel like I lost part of myself, in many ways the best of me. The e-mail says to trust in God. I am trying. I do not have the answers, but I'm trying. Ask me again on day 366.

I met several people this week who I did not know who read this blog. Thank all of you for your support, everytime someone tells me what James meant for them or that they prayed for him I am glad to know how much he was loved.