The sun is starting to peek out

So this week has been relatively better.  It's the first week that I haven't just felt numb most of the time- which is good!

My emotions still go all over the place.  But I would say that this week the lows aren't as low.  I didn't go to the cemetery on the 16th.  I really don't know what to do out there.  And I don't like that the 16th of every month reminds me of James' death.  Just like on Saturdays I can remember that he died on a Saturday.  I'm trying to reframe those days so they aren't so debilitating, if that makes sense at all.

The past few weeks I have been trying to figure out what the future looks like.  For a while, I honestly wasn't sure that I cared.  Every moment of joy that I had over the last several months made me feel immediately guilty.  Because I shouldn't be feeling any happiness- my baby died.  So why should I laugh? 

I'm starting not to feel as guilty about things like that.  I still do from time to time, but the time in between is getting longer and longer.  Which I think is a good thing.  I don't feel like my sadness is all-encompassing as much.  I mean, it's still there, definitely, but it's not as debilitating.  I know I keep using that word, but that's what it felt like for a while- debilitating, disabling.  Almost like I needed a handicap sticker placed on my entire body.  Or a sign that says, "Tread carefully.  Extreme emotions ever present."

I know that there are bound to be days where it feels worse.  But I'm starting to recognize that there are days that feel better too.  And both of those are ok. I don't want the 16th of every month to be a reminder of what I lost.  Because I had 8 other 16ths with James that full of the most special times.  Or maybe not special, they may have just been  typical days, but now those average days I cherish. 

I, of course, still miss my Jamesie.  There isn't an hour that passes that I don't think of him.  And sometimes there are 60 minutes in that hour that I am only thinking of him.  This week I ate lunch at Panera.  And remembered that last time I went to Panera with James, my mom was in town.  I happened to order the chicken noodle soup (It has the least amount of calories and I was trying to be healthy.  I really wanted the baked potato soup!).  The last time we were there, my mom had ordered the chicken noodle soup and James ended eating all of the carrots and noodles from her soup. 

It made me sad at first, but then I remembered the look on his face as he just went after those carrots and noodles.  He had always hated the mashed carrots in the baby food jar, but he decided he liked these.  He really did not like mashed up food in general.  Once he realized that he could pick up food, like bananas and avocados, he enjoyed eating much better. 

Thank you for being so supportive and listening to my ramblings.  I feel like I always write when I am sad, and tonight I'm not completely depressing!  These pictures are from right before Thanksgiving last year at the Arboretum.  James was 3 weeks old.  He wasn't as in to the pumpkins....but he was only 3 weeks old!

Halloween

This is the only picture I have of James from Halloween last year.  One of my many regrets is not dressing him up in a costume last year.   I know it's not really important, but I now I wish I had.

I didn't expect today to be so hard.  Really, I thought Saturday was going to be the worst day.  And today was just really bad, and maybe its because I didn't expect it.  I barely moved from the couch today.  The only times I got up were to let the dogs in and out.

I don't even know what I watched on tv, though I am sure it was on all day.  I really don't know what I did.  I know I kept getting on facebook and seeing the (what seems like) hundreds of adorable kids in their adorable costumes.  And with each lady bug or monkey I just sank lower and lower.  Sometimes I think I should just cancel my facebook completely!  I tend to compare myself to other people alot, and it really only makes me feel worse about myself sometimes.  Does that happen to anyone else?

One of my classes got canceled, and so I was home during the typical Trick or Treat time.  I was really planning on being gone so I didn't have to deal with it.  I hadn't bought any candy or decorated.  So I was the Grinch this year and sat on the couch, lights off, shades drawn, with no candy to give out. 

I think I should have known that I was upset about Halloween.  A few months ago, some people at church had asked me to help chair our Fall Festival.  I just couldn't.  I knew that it was the day after James's birthday, and I just couldn't bear to see all the kids in their costumes when I never had the chance to even bring James to the event.  And as it got closer, I couldn't even bear to hear about it.  And I know it's terrible, but I just can't deal with it.  I didn't even ask my friends what their children were dressing up as. 

Some days I just feel like I don't function at all.  Maybe if I had somewhere I had to be today it wouldn't have been a total loss, but the days I have no plans seem to be the worst.  Sometimes I can just sit and stare for hours and accomplish nothing.  Tomorrow I have several things I have to do, so hopefully I can make myself go do them. 

Tomorrow is All Saints Day.  I've never even thought about the day, other than in Spanish class in high school when we had "Dia de las Muertos" parties.  I read somewhere  that All Saints day is supposedly when some people believe that the space between Heaven and Earth is closer, and therefore more signs from loved ones are seen.  Well, I'll be honest, I would love a sign.  What I would really love is James to appear and tell me that he is ok- great even- and will just play with his angel baby friends until I get there.  Maybe he will. I have to hope that maybe I one day I will get a sign. 

Sometimes life is funny.  If you had told me 6 months ago that I would halfway believe that on November 1st the barrier between Heaven and Earth was thinner, I would have told you that it was all bull and you are crazy.  Now I think I just grasp at anything that could give me the chance to see James again. 

Like I said before, nothing in my life is black and white anymore.  It's all gray that might possibly make me slant towards the loony bin.  Even typing it, I'm thinking "Who the heck would believe that?!" 

So I hope everyone had a good time with their little ones today.  But tomorrow, on All Saints Day, would you mind saying a little prayer for my little one? 

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.

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. 

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.

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? 

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.

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. 

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. 

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

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.

10 months ago

James would have been 10 months old yesterday.  I miss him so much.  I literally woke up crying yesterday.  I just want my baby back.

I know a ton of people who had babies within 2 weeks on either side of James's birthdate.  I can't bear to look at any of their pictures.  I can't even fathom James doing the things that their children are doing now.  Some are talking.  Some are walking.  Some are eating real solid food.

I really just want my baby back.  I started classes last night, and all I could think about was that I wanted to be home with my sweet boy instead of sitting in that lecture hall.  I really wish I could change the past.

The last 2 weeks I have barely been able to stop crying.  I guess it's finally hitting me now.  For some reason, it seems that it is all getting harder and harder instead of easier.  Maybe because the phone calls are less, the cards are fewer and the house is achingly quiet these days.  I miss James.  I miss him so much.  I guess nothing is ever going to change that or take that away.

I guess this is what the new "normal" is. 

Yesterday

~*Disclaimer: This post contains discussion of breastfeeding and breastmilk. 
If you don't want to read about that, then don't!*~

Well, so after I had my little pity party on the blog yesterday I decided that I needed to get out of the house.  I drug myself to the gym for the first time since I was pregnant.  During my pregnancy I did water aerobics about 3 times a week.  I was the youngest one by a good 30 years, and some of the women were in their 80's!  They were so sweet to me while I was pregnant, and it was so fun to have a group of older women that I could ask all my mommy questions to!  I had ruptured discs in my back during my pregnancy, and I had back surgery when James was exactly 6 weeks old. Between the recovery from surgery and some other things that happened before James got sick, I just had not been back.  I know.  Slacker.

So yesterday afternoon I went to the gym.  I got on the elliptical and made it the whole 30 minutes.  It was awful, not going to lie.  But I finished, and went back today and did it again.  It's amazing how much better I feel when I get the endorphins going.  Everytime I hear the word "endorphins" I think about Legally Blonde.  Does anyone else think that?!  I might have watched that movie a few too many times...like every night before I went to bed my entire sophomore year in college.

I came home, and then the Mother's Milk Bank of North Texas called me to set up a time for me to bring in the milk I was donating.  They suggested yesterday afternoon.  I knew it was coming- I had applied and had a blood test already.  But for some reason it was so hard for me to actually follow through and donate the milk.

Like I said before, James was strictly breastfed.  He was so into the boobie that he refused to take a bottle.  Ever.  I mean he would throw them across the room when he was older.  When he was younger, he would clamp his mouth shut and refuse to open it.  Then he would cry and cry.  When I had my back surgery, he had to take a bottle.  I was on so much medication and anesthesia that I had to pump and dump.  So my mom got him to take a bottle by cutting a hole in her shirt, spilling milk all around it and pretended he was getting the boobie.  It didn't work at first, but he finally got hungry enough that he ate.  Have you ever seen a 6 week old baby glare at you?  Well, I have.  James was so mad when I came home and wouldn't feed him!  It just broke my heart!

So the whole time he was in the hospital, I pumped with the industrial grade pump that the hospital has.  Wow, that pump is ridiculous.  Each time we were discharged from the hospital, I came home with bags of frozen milk.  After James died, I knew that I needed to donate the milk.  It doesn't do any good sitting in my freezer.  And I know that it will help a baby in the NICU who really needs the milk.  But a part of me just didn't want to give it away.

So yesterday I pulled up to Baylor hospital and gave all my frozen milk away.  I think the lactation nurse was a little confused why a woman with no baby and no car seat in the car would be giving her milk, but she didn't ask any questions. 

After that I dropped by my sweet friend Monica's house (who is expecting twin boys!  I'm so excited! :) ) to say hi, and then Matthew and I went out to the cemetery to see James.  Honestly, I don't really like going out there.  I know that some people find a tremendous amount of comfort going to the cemetery.  I am just not one of those people.  I think it upsets me more than comforts me.

So yesterday still was hard.  But we got through it.  Below is a video that my Dad took of James right before his big craniotomy.  I think he says "momma" in it!  It's the only time I ever heard him say anything close to it, and it makes me cry everytime I watch it.  But- crying in a good way.  I'm so thankful that I can hear his sweet little voice.  One of my biggest fears is that I thought I might never get to hear him say that.  I hope you enjoy! (And like every other picture/video from the hospital- I am not looking my best.  I'm self-conscious about it, but I'm trying to get over that so ya'll can see more of Jamesie!)

NBC 5 News Story about James

I can't believe I forgot to post this!

On Monday, Lindsay Wilcox from the DFW local NBC station came and interviewed us about James and the giraffe.  She did a wonderful story about James, the tumor, and how the baby giraffe happened to be born a week after he died.  Lindsay was so incredibly kind.  I just loved her!  She has a 2 year old daughter and an 8 month old son who are both adorable.

I just feel like we really got along with her, and she was just so warm and welcoming.  I love the way she told James' story, and I am so glad that I got to meet her!

http://www.nbcdfw.com/news/health/Couple-Wants-Giraffe-Named-In-Honor-Of-Their-Son-127785173.html

1 month ago

1 month ago today I was holding James.  He was struggling, but he was still here and in my arms.  2 months ago he was fine.  Or what I thought was fine.  He and I were throwing a ball back and forth across the living room.  James was somewhat unstable as he threw the ball, but I just thought that it was normal that he wouldn't be able to sit still.  He had sat still before, but for some reason I just didn't see it.  Looking at the videos now, it is all so clear.  Gosh, I just had no idea then. 

I miss my baby.  I miss him so much.  I miss giving him baths.  I miss walking into his room in the morning and seeing his smiling face.  I miss changing his diaper.  It took me 2 weeks to finally change the diaper genie.  For some reason I just couldn't do it.  And now I have no reason to even have a diaper genie.

I miss everything.  Today especially is hard.  It's 12:00 and I haven't taken a shower or gotten dressed.  I've had this rule that every day I have to take a shower by noon.  Otherwise I might stay in my pajamas all day and that doesn't accomplish anything.  But today is different.  I just can't make myself do it today. 

I haven't hardly touched his room at all.  My friend Cathryn and I cleaned it and organized it.  But it looks exactly the same as if he were still living in it.  Sometimes I just go into his room and sit in the rocker.  So many memories in that rocker.  It's where I fed him every night before he went to sleep.  So many stories read.  So many hours just rocking him in that rocker. 

I've held other babies.  The feeling of longing doesn't go away though.  No other baby could ever take his place.  I had a dream a few weeks ago that I had just given birth to a little girl.  And I just hated her.  Absolutely hated her.  Everything she did, I hated her.  And who hates their child?  But I did.  With every toy she played with, with every laugh, I thought to myself (in the dream) that James didn'd do that.  As she got older, past the age that James had passed away, I just kept thinking that James wouldn't have been that way.  He wouldn't have acted how she acted.

I asked my counselor about it (who is wonderful and is really helping me during this time) and he said that I probably had this dream because there isn't a replacement for James.  For me, the thought of another child is just trying to replace my perfect baby.  And that doesn't mean that I will always feel that way, but I do right now. 

So, sweet James, there will never be a replacement for you.  He is never far from my thoughts.  Every time I get in the car I think of the car seat that should be there.  Every time I go to the grocery car, I catch myself reaching for the shopping cart cover that he will sit in.  Every time I see his play group friends playing, I think that he should be there.  And although my friends are amazing at including me in the "normal" things that I was a part of, its still hard. 

So today is a hard day.  Today is one of those days that it's a choice to take a shower.  And it's a choice to get up and do something.  I don't know what that "something" will be.  I might go to the cemetery- I've only been once since we buried him.  I'm not sure.  Thanks so much for all your prayers and support- especially today.

The Dallas Zoo

 

Thank you all so much for submitting so many forms to the Zoo!  We are so thankful for everyone's support in this. 

 The name for the baby giraffe will be picked by the handlers that take care of the giraffe.  The Zoo leadership will pick 5 names for the handlers to choose from, and then they will make the final decision.

 We are so thankful to have even had the opportunity to try and name the giraffe!  But we completely understand if the handlers choose a different name. As you can see, James absolutely loved the Dallas zoo.  We had the opportunity to take him several times, and he had a BLAST! 

And just so you all know- we support the zoo in whatever name they choose!  We can always go to the zoo and call her "Jamie"- even if they don't choose it!  I know that many of you have called the zoo on our behalf.  I can't thank you enough for thinking of us.  The zoo is well aware of the situation, and they are inundated with calls!  Please know that they are doing a wonderful job of manning the phones, and they want to keep the contest fair. 

Because there is a trip involved, we have told the zoo that if the name "Jamie" was to be picked, and they were to award the prize to us, we would absolutely not accept the trip.  What is done with the trip would be up to the zoo, but we would whole-heartedly embrace the trip being donated to a family in need or to Make a Wish Foundation or whatever the zoo wants to do!  I know these are hypothetical situations that would occur after the naming, but I just want to clear that up!

Thank you, again, for all of your support!  We are so incredibly blessed by this out-pouring of love.  You are so very dear to us, and we cherish all of your thoughts and prayers still.  

And I have to add this- wasn't James the most beautiful baby?  I just love the last picture of him.  We were checking out the lion at the zoo (I think it was the lion...could have been a tiger or a jaguar.  It's hard to remember!).  I know he's my baby so I'm not supposed to brag...but sometimes I just can't help it. :) I miss those sweet eyes taking in the world, always inquisitive and searching for the next thing to pop up. 

Answering the "Why?" question

I know that so many of you have asked God "Why did this happen to James?".  Please know that you are not alone in asking this!  I have asked God this question so many times also.  I think I may have said this before (or maybe I just thought it- I can't remember!) but there is no good reason why these things happen.  It's the same question- "Why do bad things happen to good people?"

For me, I take so much comfort in knowing that James is with Jesus.  I don't know what Heaven looks like.  I don't know if you spend all day singing to God or floating around on a cloud.  I know there are a lot of books out right now that describe Heaven's glory.  For me, it doesn't matter what Heaven actually "is".

In my mind, there is only one thing that matters.  I know that Jesus loves James more than I can fathom.  I know how much I love and did love James when he was here with me.  I know the deep longing I have for him and I know the aching in my heart that misses him.  But I also know that God created James.  He formed him and knows him more intimately than I do.  And if I only know one thing- that is that God loves James more than I possibly could, so that must be ALOT!

One of the ministers at my church, Jay Cole, came and spoke to our Sunday School class a few weeks ago.  I'm going to try to paraphrase what he said- and hopefully I won't butcher it too much!  His words have really helped me the last few weeks ago.

Reverend Jay said that he believes that God gives every person, every being, Free Will to choose God.  That means that every single living thing has the opportunity to submit to God and His will for our lives.  In cases like these, that means that even something as small as a single cancerous cell has the opportunity to either a) continue reproducing and cause havoc on James' body or b) submit to God's authority and stop.

So, in other words, it is not that God just didn't choose to heal James.  God is so loving that he allows all of us the chance to CHOOSE him.  (And Jay, I really hope that I explained this right and didn't mess it completely up.  Let me know if I need to be set straight!)

I know that this is a somewhat simplistic view- but for me, it definitely helped.  And it doesn't explain always why bad things happen but to me it makes sense!

Also, while I am on the subject of God's love- I know I have said this before, but I cannot tell you how vitally important my church community and Sunday school class have been.  I attend First United Methodist Church, Dallas for those of you in the area and who are looking for a church home.  I have been so blessed by this amazing group of friends who have become my second family.

And I know how hard it is to get up the courage and attend a church, especially if you don't know anyone!  It is super intimidating!  But please know that there are people in every church who have open arms and loving hearts and want to get to know you.  They want to share their lives with you and want you to be a part of their community.  If you visit one church and it doesn't feel right- then keep looking!  I know the "church shopping" experience can be frustrating, but the reward is so incredibly worth it.

I hope I haven't offended anyone.  I'm not a theologian.  I have no advanced knowledge of the Bible and have honestly been slacking off in my Bible study.  The one thing I do know is that God's love is infinite and that no matter what happens, God's love remains unchanged and faithful.  I hope that each of you who read this know that, and know that you are so very important and that you matter.  You matter to God and you matter to me.

And so if you are struggling in the "Why's?" of life, I hope that this helped maybe a tiny bit. Or maybe it didn't!  But that explanation helped me so I thought that I would share! :)

CBS 11 News story about James

CBS 11 News in DFW came today and interviewed Matthew and I about James and our efforts to get the Giraffe named after Jamesie!

Below is a link to the video and the news story if you are interested in watching!

http://dfw.cbslocal.com/2011/08/09/naming-campaign-pushes-to-honor-8-month-old-cancer-victim/

CBS is also airing the segment again during the 4:00 news hour today (August 10th).  I would love for you to check it out live if you are in the DFW area!  We had a great time talking with Jay, the reporter.  He was so kind and compassionate and I am so thankful that he did the story on sweet James.  Jay is expecting his first son in October and so he really understood what it was like as a parent wanting to carry on your child's legacy.  

Missing James

So I know it's been a long time since I have posted anything. For some reason, it just doesn't feel right to spill all my feelings out for everyone to read. Part of it is because at any given moment, I could have polar opposite feelings. Hopefully that is normal- but I guess there is nothing "normal" about burying your 8 month old son.

We spent alot of time at Baylor talking about strengths. My sophomore year, Baylor started using Strengthsquest to assess and develop students' strengths. Marcus Buckingham, who is a former researcher at Gallup, and currently is probably the most well-known strengths-based leadership consultant for companies, organizations and education. He has written several books about strengths which I would highly encourage you to read if you get a chance. Strengths-based leadership is a passion of mine, and I absolutely love utilizing strengths to assist students in defining their calling and ensuring success. Ok long explanation for what I am about to say. My strengths, according to Strengthsquest, are Positivity, Empathy, WOO (winning others over), Belief and Maximizer.

Positivity has always been my number one strength. No matter what kind of personality test I take, positivity, or something similarly related, always ends up on top. So for me, having a negative response to this situation is strange. Most of the time I take the positive route- James is with Jesus. Which he is. I have absolutely no doubt about that. But there are times that I am overwhelmed by the thoughts that I am left alone without him.

I read the headline of an article the other day- "Motherhood is a calling". I didn't read the actual article. I just couldn't go there. Because what do you do when you have felt your whole life that Motherhood is your calling, and then your baby is gone? Alot of days I feel like this. If you ask anyone who knows me- even has met me once or twice- they will probably tell you that I was meant to be a Mommy.

When I was about 3, I was watching Dumbo. I remember sitting in front of the TV just bawling. It was the scene where Dumbo's mother is locked behind the bars of her cage, and Dumbo desperately wants his Mommy. She gently pulls her trunk through the bars, scoops him up, and rocks him to the song "Baby Mine". (Allison Krauss has a really beautiful version also if you want to listen!). I remember thinking that when I had a baby, I wouldn't be able to bear being away from him (or her).

And so now, over 3 weeks later, I still can't bear being away from him. I don't know how to do it. I feel like I don't even know how my life if supposed to work. How can my life possibly make sense without him in it?

Sometimes I am just desperate for someone to ask me about him. I was at Target today, and I was just hoping that my usual check out lady was there. Then maybe she would ask about him. And maybe I could talk to her about my sweet baby. I love it when people tell me about him. Whether it be stories that they have about him, or maybe they saw something when I wasn't looking. Or other times it's the little things that remind them of him now. Because for me, I just don't want him to be forgotten. I don't want people to pretend he didn't exist.

Just because that's what I want right now, doesn't mean that everyone who has lost a child wants this. I can't pretend to know what other people know. And I know there is no "one-size fits all" grief. But I am so grateful for every sign that someone is thinking of my baby boy. Because I think about him every second, every minute, every hour of every day.

My brother and I took a little trip to San Diego this week. Which, by the way, if you have never been is absolutely beautiful. I was feeling down one afternoon. We had just checked in to our hotel in La Jolla, and my brother suggested that we take a walk to the beach. We turned out of the hotel, and directly in our path was the St. James Episcopal Church. In the window were several giraffes. What are the odds?! Giraffes in the window of a church called St. James. I had to laugh and was thankful for God's many blessings in my life. Some of them large signs, like this one, and other small ones that don't go unnoticed.

I'm going to try to start writing again- hopefully my writings won't disappoint!

James Camden Sikes Fund

Kara and I are establishing a fund in James' name to direct resources towards research of rhabdoid tumors. In order to give to this fund, please click here. We would like to thank the Communities Foundation of Texas for helping us facilitate this goal. Donations are tax deductible. For those of you who would prefer to write checks, checks can be sent to:

Communities Foundation of Texas
James Camden Sikes Fund
5500 Caruth Haven Lane
Dallas, TX 75225.

Make checks payable to Communities Foundation of Texas, with James Camden Sikes in the designation line or memo line. We would appreciate gifts to this fund in lieu of flowers. James never cared much for flowers, but I do think he'd like to do something about rhabdoid tumors.

Thank all of you.

Grief

I physically cannot cry. I cried for about 5 minutes today, but that was all. And it does not make sense to me at all. How can I not cry? My baby is gone. How am I not sobbing?

I have a masters degree. I first learned about the 5 stages of grief in my high school sociology class with our basketball coach, coach Padek. We read Tuesdays with Morrie. I don't really remember discussing the book in class, but I do remember that grief has stages. (It was also in that class that we learned about the terrorist attacks on 9-11. I was a senior in high school. You can do the math). I then went to Baylor and learned more about the 5 stages of grief. And then I went to grad school at Baylor and learned that Kubler-Ross coined this model while working with terminally-ill patients in the late 1960's. The stages are fluid, and not every person experiences every stage. And just because you move from one stage, like denial, does not mean that you won't circle back to it again.

So yesterday I was in denial. Like Matthew said, we spent the whole day looking at cemeteries. Every time I looked in the back seat, I pretended like the car seat was still there. I rationalized it to myself that maybe James was with a relative and they needed the carseat. Why else would it not be in my car anymore? Which that doesn't even make sense. The only nights I ever spent away from James were the two nights that I was forced to go home when he was in the hospital. I had back surgery when James was 6 weeks old. I was supposed to spend the night in the hospital that night, but I just couldn't bring myself to be gone from him that long. I thought about it, and the largest chunk of time I ever spent away from him was 10 hours. And that was torture.

So now I have spent 55 hours away from my dear boy. (Edited: I lost an entire day when I first posted this. I seriously forgot it was Monday.) Nothing makes sense anymore. It doesn't make sense that he would be spending time with anyone else- I would have never let him! Those of you that know me in real life know how desperately I love James. He was my everything. Wherever I went, James went. If James couldn't go, I didn't go. Which is probably so incredibly unhealthy.

Then it hit me. The anger. It rushed in, all at once last night. And man, was I angry. I'm still angry tonight. How utterly unfair it all is. Why my sweet James? Out of all the babies in the world, why him? I'm angry he didn't have a chance to fight. I'm angry that the chemo wouldn't have worked. I'm angry that we only got 2 days at home. I'm angry that there is really only one place doing research on his type of tumor. I'm angry I have a hand mold kit sitting on my dining room table that I didn't even have a chance to do. I'm angry that the funeral home asked me his educational level today. I'm angry that he will never say "Momma". I'm angry he will never walk, talk, sing.

But the truth is, I'm angry because of all the things that I wanted to experience with him. It's so incredibly selfish. Because Jamesie didn't need any of those things. James only needed my love. He needed to feel safe and secure, which he did. The anger is from a selfish place. And not that I'm not justified in being angry- I think any good counselor will tell me that it's ok to be angry. And I own my anger.

And the Guilt sets in. I feel so guilty for being angry. I grieve for James. But I also grieve for those of you who have emailed me that have lost your sweet children. For those of you who lost babies in the middle of the night, without a chance to say one last "I love you". I grieve for those of you who lost children after long, hard battles with terrible diseases. I grieve for you who lost children who never took a breathe in this world. I grieve for those of you who desperately want your child and are unable to have them. Those of you with empty arms and no baby to hold.

So I feel guilty that I am complaining that I only had 8 beautiful months with James, when I know full well that there are so many of you who feel like 8 months is double, triple a lifetime.

Thank you all for your comments. I read them all. One of you sent me (emailed me? I can't remember) a quote that you had heard. It has meant so much to me today.

"Dear Lord, I would have loved to have held my baby on my lap and tell him about You,
but since I didn't get the chance,
would You please hold Him on your lap and tell him about me."

And I am so lucky that I got to hold James in my lap for 8 months. I always thought that at some point, I would be like that mother who made tapes for her daughter when she was dying. I would record every piece of advice, every subject, that I wanted James to know if I were to go before him. I never thought that he would go first. I wish I could have gone first. It must have been so scary for him to go first. And although I know he was not alone, I so very much wish he didn't have to go.

So we will celebrate James on Wednesday. We will celebrate his life, his legacy. We will celebrate the person that he was. I'm planning on wearing a giraffe print dress. I don't want people to wear black- I never dressed James in black one day in his life!

We are working on a charity to donate to in honor of James. I know we are so behind on this. In lieu of flowers, we would really prefer that people donate to a charity to honor James. (Which if you feel led to donate in honor of James somewhere, please do! I really feel like James' legacy is one of love. And if you feel like to honor James means volunteering your time or money at your local children's hospital, we would love for you to do that.)

Thank you all for letting this blog be an outlet for me. I hope that by being honest about my feelings, it will let someone else who is going through this that it's ok to feel all sorts of emotions. There is no one "right" way to grieve. And even though we take comfort that James is with Jesus, we still miss him so and grieve our loss. We miss him so very much.