It finally arrived.

I seriously doubt anyone at all still checks this thing. I sure don't come here much anymore. But I wanted to post a picture of her beautiful stone. I don't know if it's too tiny to read but it says,

Ray
Sleep in Heavenly Peace
Gracie Belle
Jan 9 2012-Jan 11 2012
Beloved daughter of Emily and Kendall

We love it.

In other news,

We are doing really well. Ups and downs for sure but for the most part things are stable. Every now and then, I will feel like the wind was knocked out of me, but we carry on.

I am working on a video of Gracie. When I finish it, hopefully I will be able to post it. We shall see.

I think I am internet fatigued because I just sent a bunch of e-mails and did some family website postings so I am fairly unmotivated to write much right now. Sorry, you are all just random victims of task order.

Also,
my oldest monkey, (who was fairly unhappy with mom and dad tonight), wrote us letters.

"Dear Mom,
You are doomed."

"Dear Dad,
Perhaps you are stupid."

Lovely, isn't he?

And We're Back.

It's been a rough couple of weeks. I'm not going to lie.

A couple of week ago I attended the funeral of the sweetest four year old boy that ever lived.

It was horrible. And the public part of me wants to write that I am glad he is at peace and the service was beautiful. And the service WAS beautiful but it was horrible. I felt like I was watching myself. My sweet friend was a mess and shaking and sobbing and I felt every sob rack through my heart.

These little ones.To be given a taste of heaven and then having it torn away. It's excruciating.

I wasn't going to go to the cemetery because honestly I didn't know if I had any more than the service in me. But we went. And I stood behind the casket and I could see my friend's face. And she had this stare. This stare I know intimately. The same absent, numb, stare on my face at Gracie's funeral.

And it broke my heart and it brought back waves and waves of feelings and memories that I can't say I care to relive. It is a wonder mothers can even walk at their child's funeral. It is a wonder our hearts can keep beating at all.

They had made these little rubber bracelets that said, "Angels for Atticus" on them. And I wore mine for days after. I went to Wal-Mart and all I could think was. They don't even know. They don't even know that an amazing little boy is gone. Missing from this Earth. And it was all I could do to push my cart down the aisle and not sob like a lunatic for some person's "people at Wal-Mart" photo montage.

The feeling of pain and loss isn't as intense for me as it was at first. But it is always there, stumbling around in the background.

When I braid my niece's hair, I wonder what Gracie's hair would have been like. Would it have been long enough for a ridiculous looking tiny little hair spike by now? Would it have stayed as dark as it was?

I don't even look at the girl's clothing section.

When I think about going to my boy's sporting events, (and I'll be honest I haven't really gone much at all), I sometimes feel resentment that I won't be going to any dance recitals. Won't be searching etsy for the cutest tutus.

I meet new people now and they don't even know. And right now I don't even tell them because I don't like the way it puts them off. Makes them frown and apologize. I don't want others to feel sad. I feel sad enough.

My hope chest is full of little pink things and smells and memories and I can't even bear to open it. I can barely stand that it is even in my room sometimes.

There is always a little baby girl that sticks her head up over the pews at church and I have to look away. I avoid baby blessings like the plague. It's hard to hear a blessing full of life and exciting expectation when I don't get to expect anything.


Okay. Sorry. Sometimes I get carried away but it feels good to just get it out sometimes. I do expect things. Great things. I know I will get to be with my little Belles again someday. I cannot wait for that day. Death is not such a scary thing to me now. I know I have my little baby girl just waiting there for me and that is a wonderful and peaceful thing to know.

I have an amazing husband who is STILL carrying bits and pieces of my heart for me. He is a rock and I sometimes wonder if I deserve someone so good and kind.

My monkeys are still crazy and probably will always be. I was at the grocery store today and I had just a few things left to get and I told the boys, "We're almost done. We're almost at the checkout. Just a few more minutes." And then I realized I was repeating to myself over and over and over, "We're almost done. We're almost there." Insane Mother aisle 8.

James prays that we can all be with Gracie again someday. Harrison prays that she will come back. Bennett just snuggles. I thank the Lord EVERY day for giving me that little boy. I believe He knew that I would need a little baby to love on. Every now and then I sneak into his room at night and pull him out of his crib just so I can rock him. It is all I can do to ease the ache in my heart sometimes.

Anyway. And last post I was telling you to check my other blog. Haha. Someday.

Room with a View

I haven't felt like there has been much to say lately. I had a little bit of a blue period which I wasn't entirely prepared for. I don't know, she passed and I was sad and it was a slap in the face but then I felt peace and closure and I thought, maybe I've survived this. Maybe I'm okay. And then I just sort of slipped. Partly me but mostly my husband and good friends kept me from slipping too deep.

I have one friend who for whatever reason is just acutely aware of me and my needs. (and lies).

a few weeks back I was supposed to be somewhere and I just told her I was tired/not feeling well/busy ALL at the same time so I wasn't going and she said, "me too. We should probably go to dinner and a movie instead."

And we did. And it pulled me back a little closer to the surface. And today I am good again. I guess that's how it will be. Ups and downs. I know people have told me that but for whatever reason I like to think I don't belong to THAT club. That's for OTHER people.

But maybe not.

But to the point....

Here is Gracie's place. Isn't it beautiful. In the spring Wildflowers are just EVERYWHERE. It is magical.

This is a headstone I really really wanted to replicate but we are finding it difficult to find a stone cutter that won't charge A LOT. We'll figure it out someday I guess.You can see Gracie's plot in the background with the pink flowers. I love this headstone because it is tiny and beautiful. At the bottom it says "Weep not papa and mama for me for I am in heaven waiting for thee" I love it. 

This is her spot. In the background you can see a little bell. My boys call it her door bell and when we go visit we ring the bell to tell her we're here and then she comes to be with us. At first it was kind of just a special story to tell the boys but I don't know. I ring it when I am alone and I can tell you that I know I have felt her spirit very close. A bell for our Belle.

I plan on continuing to write on here for thoughts on Gracie and this experience but I think I am going to try to start writing on my old blog again. www.ejray.blogspot.com I have three crazy monkeys disguised as boys to think of after all.

Love, Emma

Brave Like Gracie

I've been into reading lately. Little portable escape routes.

But reading pre-Gracie and reading post-Gracie feels different to me. Like I understand something there that I didn't before.

I love to write. It is a hobby and it helps me escape a little. But I've always struggled with protagonists. Specifically protagonists in tough situations. I could just never really get behind them emotionally. For example, in a lot of these hero stories, Lord of the Rings, Harry Potter, pick your poison, I would read about these protagonists who were the "key" to saving whatever world they had to save.

They were the only ones who could do it. And to me, I was like "come on! Buck up Harry! YOU are the chosen one so just do it!"

And when they were frustrated or reluctant I always thought, Well geez. It's for the greater good you know. Pull it together.

Call me insensitive. Call me immature. I probably was both and more.

But I feel like I get it now.

I was the chosen one. I was chosen to be Gracie's mother, to be the vessel that got her here and back to her Father in Heaven. And I can say that many times I didn't want to be. I didn't want to carry that ring to Mordor.

I would sometimes lay there at night with my husband and throw a tantrum like a five year old and just keep saying, "I don't want to do this. I don't want to be this. I don't want to do this!"

Sometimes I would hope I would miscarry. They told me every dang appointment I was going to. Please, just end it, I thought. Or can't this be happening to anyone else? ANYONE else?

But it wasn't. It was me. It was happening to me. It was my "quest".

And now she's safe and sound and things are returning to that quiet stability I once knew. And I feel different about life. I feel older, sure, but I feel stronger. I feel sad, but I feel great hope.

I guess I can see now that I am the protagonist of my story. And I will get discouraged and I will get beaten down but I feel like I can be brave now, something I had never really felt before.

The Benefits of the Doubted

Sometimes I can't sleep at night.

Last night was one of those nights. I wasn't having a particularly hard night or anything I was just restless. I think My husband was too because he was silent as the grave. Whenever he is silent, he is awake. It's the snoring that lets me know he's asleep. (and in his defense it isn't snoring, it's just breathing but I need silence to sleep dangit! Can't he just not breathe?)

But anyway. I was laying there and my thoughts were drifting all over and back and I began to wonder why. The question of all questions. I don't really ask it in a "WHY??????-insert tears-" kind of way anymore. I just wonder why.

What was the purpose? What was the point?

Well I know, for Gracie, at least she needed to come here and get a body and become part of our family. But for me. Why for me?

And I don't think I know the complete why, or the rippling effects she will have in the years to come but I do think I have learned one thing.

Everyone has hard things.

It's simple, obvious even, but I think we forget. We all know... but we forget.

I am now an advocate for the doubted and am constantly fighting for their benefit.

Everyone, everywhere gets the benefit of the doubt from me. Whether it is someone who said something seemingly rude or someone who cuts me off in traffic, they are now recipients of my benefit.

I can tell you this though. There is nothing like a personal tragedy to bring people out of the woodwork who want to share their tragedy with you and give you the beautiful gift of empathy. EVERYONE has hard things. EVERYONE.

Most people just don't wear a name tag that says, My name is Veronica and I am currently struggling with [blank], the hardest thing I have ever had to do in my life.

I cannot even count the number of times I was driving home from a doctor's appt in  Dallas just trying to keep a grip on the edge of the precipice I was hanging from. I was distracted. Sometimes tears were blurring my eyes. Yes there are road rage jerks out there, but I like to think that often times there are people like me. Just hanging on.

I am not sure why I wrote this. I am debating whether or not I should even post it. But I probably will. Maybe everyone that reads it will remember it and be a little kinder, a little softer to others. And I think that would be good.  

People Who Don't Know

My phone just rang from our bank's fraud prevention department because I just paid all the medical bills. Guess it's good to know they are aware.

I was on the phone with our insurance for a while and they were so confused about billing and neo natal services and we finally whittled it down. She said she was going to have to forward me to something something management. Apparently at least at this hospital, as long as your baby leaves with you their costs just go on your bill. If they stay in the NICU then they get their own bill.

It was really frustrating because I kept getting put on hold and shuffled and I would try to cut in and explain and then some obnoxious music would cut me off.  I don't know why there was such great confusion but there was.
And the lady was finally like "How long was your baby in the hospital after you left?"

And I said, "She wasn't."

And she said, "It has her listed her as having been in the NICU with blah blah blah staff."

And I said, "She did have a NICU nurse but she died so really, she left before I left."

Silence.

Shuts them up every time.

And it's weird. Because most of the time I am so grateful to come across people who don't know. I don't have to talk about her. I don't have the identity of girl-who-lost-her-baby. And then sometimes I just have this inexpressible urge for people to know.

Like the guy at the tire shop or a random lady I'm chatting with at the park. Or on a plane.

Which brings me to another story.

I recently went to Utah to visit one of my best friends for a little down time.

On the flight there, there was a woman sitting next to me and we made small talk for a second and then I got out my book and she reclined to sleep. I looked down at my locket that has pictures of Gracie in it and I turned to her and said, "Can I ask you a weird question?"

She said, ".......Yes"

me "You asked me just now how many kids I had and I said three boys. I actually had a little girl too, but I didn't mention her because she died.  But what I am always wondering is would you, as an objective stranger feel uncomfortable if I had said that or would you be fine? I just don't know what to say to people."

By her expression think I pretty much shocked her pants off.

"No, it's fine. It's sad, but I don't mind that you told me."

I told her a little of the story and showed her the pictures in my locket and then said thanks and went back to reading.

And then she starts crying. I mean crying. For like ten minutes. I apologized and she said, "no, no it's fine it's just touching and a little sad"

So. What do I learn from this? Maybe don't mention her??? Or maybe don't break out the pictures? I really don't know. But most of all I think I learned that there are still so many good caring people in this world and I'm really touched that she, a total stranger, would cry for me and my baby.

And to all of you readers who have cried with me too, friends and strangers a like, I'm so so grateful for you too.

The Funeral Part Two

I'm not going to lie. I've put this off.

Sometimes the days are easier when I don't relive things. Sometimes I can't control it, out of the blue a heart wrenching horrific memory will assault my mind and I can see everything with excruciating detail causing me to lose it. But sometimes I can, for example the blog.

I don't want too much time to pass though because I want to remember.

So. Funeral Day.

I wore pink. And I carried her blanket. When they took her away at the hospital I clutched onto that blanket like it was the only thing keeping me tied to this Earth. I clutched it for days. I slept with it, ate with it, basically all but showered with it. I still sleep with it but I suppose that will pass in time too. Just not yet.

We went to the funeral home. I was apprehensive. We went into the foyer and off the foyer were all these double doors. We were pointed to our doors and went inside. And there she was. Laying peacefully in a cradle. She could have been sleeping. I ran to her and held her and sobbed.

We prepared her coffin. Her sweet little coffin my dad made. It was perfect. We filled the bottom with rose petals. There was a little white pillow for her head. It was as lovely as it could be.

I don't think I can write much more about that. It was a deeply personal and sacred time. I think this picture pretty much sums it up.



Kendall and I had to part ways before the funeral. He had to go home and pick up some of his family members and I needed to stop at the pharmacy first so I went with my mom.

The time for the funeral was getting closer and closer and I started feeling more and more nervous. I didn't want to be there. I didn't want to go in and have everyone stare at me and look sad and say they were sorry. So I told my mom I wasn't going.

I wasn't.

Let me just pause a second to express my gratitude for my parents. For everything they have done for me. Without them I would be....I don't have words.  

But my mom. She is my best friend and often times a second self closely aligned with my thoughts and needs. She just anticipates--me.

Anyway. She turned to me in the car and said, "You need to put on your big girls pants and go. Gracie would want you there. You go, you bear it and then you can go home and fall to pieces. But you go."

I felt like a little child again. She was right. So I went. 

But when I walked in the foyer and I saw people standing there I bolted for an empty classroom somehow grabbing my youngest sister by the arm as I went. She was like a shield. I pretended to be engrossed in a conversation with her until we closed the door. 

I collapsed onto a chair and she sat down next to me. Now. She is ten years my younger and still in high school. Let's just say, her life experience is a little different than mine. But she was exactly what I needed. She said, "What do you need? Do you want a hug? Do you want me to tap dance? Because I can do that." (and she literally could because she had been practicing for her school musical)

I laughed and said no dancing was necessary and then we somehow got started on planning this amazing junk food fest for after the funeral. It was very very detailed involving a handful of establishments and carefully ordered food and the creation of a junk food pyramid balancing the salts, and sweets, and sours. It distracted me and made me laugh a little. 

And then my mom flung open the door saying "there you are. Everyone has been looking everywhere for you!" 

I hadn't relized no one witnessed us going into the classroom but oh well. It's not like they would start without me.

We went to another classroom where all family members were and held a little prayer. My monkeys and the other cousins were running around laughing and screaming and everyone kept telling them to be quiet and tried to restrain them but I liked it. I imagine that if Gracie was with them she would be doing the same thing  

Now. This what I think about funerals. It's like a wedding except there is no honeymoon at the end. I had expected there to be my family and maybe a handful of others. But I was wrong. The entire chapel was packed. I was not prepared. I suddenly felt self conscious and emotional. I don't even know who was there really because all I could do was stare at the ground as we walked the long aisle to the front. 

The service really was lovely. We sang an opening hymn and then Kendall's dad offered a prayer.

And then....Kendall spoke. When Kendall had said he wanted to speak I thought he was crazy. I knew that if I had tried to speak I probably would have sobbed until I blacked and out and they would have had to carry me out of there. But he did. And he did it with grace.

He wore a hot pink tie. If any of you know my husband, you know this is highly irregular. The only reason he possesed a hot pink tie was that he was forced to wear it for one of his brother's weddings. He is just not a pink guy and definitely not a softie.

But oh, Gracie Belle. She was only with us for a matter of moments really and he will eternally be wrapped around her little finger. He wore that pink tie with pride for his little girl. It was all his idea. I love that man.

He somehow managed to speak and then a family friend, Eric sang a beautiful arrangement of 'Silent Night'. My dad accompanied on the piano. I found out after the fact that they were very very nervous about the performance because they had never made it through the song without mistakes or without breaking down once. Not ONCE. But I believe the Lord strengthened them because they performed it PERFECTLY. I am almost certain not one eye was dry afterwards.

Then our stake president, President Riding spoke. I have known him since I was very young and he helped guide Kendall and I through this trying time and I just felt he would be perfect. And he was.

We had a closing hymn at which point my children were about to bounce off the walls and my father said the closing prayer.

I know this took forever for me to post and you to read but I do have more to say about the burial. HOWEVER. I will have to have a funeral part three because I am done for now. 

Until then.

Watch your Pews

I'm fine a lot of the time now. I go long stretches without crying or feeling overwhelmingly sad. I do miss her.
A lot.

But I feel a great peace about her and the knowledge that we will be together again someday.

I've been finding ways to keep busy though. Every door in my house needs to be painted so that's been SO fun. The monkeys are, of course, all consuming with peace treaties that need negotiating and the literal entire gallon, of spilled milk (the morning after I mopped the floor), to clean up. And at our house we DO sometimes cry over spilled milk.

This weekend my brother blessed his new little baby boy (born about 3 weeks before Gracie). I felt no apprehension about it. Seriously. None at all.

Sunday morning went something like this. I got up, the boys had colds so I was going by myself. I woke up a little late so I was rushed, James spilled an entire gallon of milk on the floor, tears ensued, stress levels rose, but I got out the door and on the road.

I arrived at the church about 20 minutes early. I searched for my family and my sister-n-laws family and couldn't find them  so I went ahead and reserved two huge long pews towards the front. I felt so proud for being early and productive. I shooed people away looking for seats. I was saving them for MY family. WE were important. MY brother was blessing HIS baby today. I relished in the quiet and peace without my circus. And the time passed. And passed.

And finally it was five til so I texted my brother and said, "where are you? I have two rows saved!"

he texted me back and said "we're all here... where are you?"

At the wrong church apparently.

I was so embarrassed I grabbed all my things that were strewn across the two rows and ran out. It was fine it was just embarrassing.
*(my brother has decided to call this pew terrorism. He thinks we should show up at random churches, save a handful of prime pews and then abandon them right before the service starts. I think it could catch on, no?)

Anyway. I booked it to the correct church and got there barely in time. I was flustered. My brother got up to give the blessing. I tried to settle myself after rushing there. I bowed my head and closed my eyes and he started speaking and I started crying. Like serious crying.

Here's the thing. It wasn't like I could feel it coming. There was absolutely no warning. I wasn't apprehensive. I didn't feel the tears threatening to come. My throat didn't tighten up. NOTHING.

I was fine and a split second later I was not. Like a slap in the face.

I concealed myself the best I could and when he was done excused myself to use the restroom. I made it into the bathroom, into the stall, locked the door and lost my mind. I had to keep it quiet for the first few moments while a lady finished washing her hands and the second the door clicked I cried.

It's a fine balance because I am so so happy for my brother and their healthy little baby. He is darling and I love him. I love holding him. It fills the little hole in my arms.

But I guess, it's still hard. By the way I lost it, I apparently wasn't aware of just how fragile I still am but I guess I am.

Church is hard in general. Lots of little babies. Lots of people asking you how you are. You are close to the spirit and I think that makes your heart tender. It also didn't help that in that particular meeting a man got up and spoke about his new little baby girl born with a heart problem. He described watching the oxygen monitor, watching it decrease little by little and it just brought back such a flood of memories. Vivid vivid memories.

When I got home, I explained to Kendall how shocked I was that I went from zero to 160 emotionally and of course, as Kendall usually is, he wasn't surprised. He said that he thinks surviving something like this leaves physical wounds but also spiritual ones. And that I can see the physical ones and monitor the progress and see when I am healed, but the spiritual ones are little bit trickier. And someday, the spiritual ones will heal too, but there will always be a scar.

He's probably right.

   

I am Pariah.

Or at least I feel like one. It's like I am in this semi-existence. Half-in, half-out. Wanting to resume business as usual but also not.

Harrison's Valentine's party was today. My attending it hadn't given me a second thought until I pulled up to the doors. This is a place where everyone knows what happened, but I don't really know anyone there. As if trying to make small talk isn't hard enough.

I considered not going and then I realized I had his Valentine's so I had no choice. I walked in and everyone said "Hi!" and I mean "HI!!!!!" Too much. They knew it. I knew it, but no one knew how to de-awkwardize the situation so they all fell into small groups of twos and threes and chatted.

I kind of went over to Harrison and hovered, attempted to jump into a conversation which came to a stop when I came over and I eventually wandered back to Harrison. I sat on his tiny little chair and made him sit on my lap.

He was like a human shield. I acted really engaged in what he was doing and saying. And then they pulled him out of the room to play some game. So I turned to one of his little friends and acted really engaged in what HE was doing and saying.

And I've come to realize that it is much easier for me to socialize with four and five year olds. I am starting to feel much better about my plan to teach preschool in the fall. One of the little girls who had previously been OBSESSED with the fact that I was pregnant came over and said, "Is the baby out of your tummy?" I said, "Yes." She looked me up and down and said, "Okay" and started talking about Rapunzel.

Now that's the kind of conversation I can handle.

I know I never posted part two of the Funeral but I am just not in..."that place", I guess. Right now, it feels better to keep things tucked away. I think I am in a place where I don't want to relive it over and over in my mind. But sometime I will be. I'm sure of that.

My friend and amazing photographer Toni Elmer (http://tonielmer.com/) sent me the rest of the pictures and I this is one that I love.

Signing out.

The Funeral Part One

I think I will post about the funeral in two posts. This one will be mostly pictures and the next post will include pictures of the program and more my take on the day. So. This post=pictures Next post=words. Pick your poison.

Can I first just say how much I love these three little monkeys? They definitely keep me moving forward and keep laughter and love in our home. 

Bennett at the hospital wearing the angry birds pig hat his Auntie Michelle made.

Sweet brother James

Harrison stealing a peek at Gracie

Above is a picture of me and my Gracie the morning that she passed after I had fallen into an exhausted sleep, and below is a picture of the sunrise that morning. Wasn't it beautiful? I think it was meant just for Gracie. 

The day of the funeral Kendall and I went to the funeral home to prepare her casket and put her in.

We filled the casket my dad made with roses so she would have a soft sweet smelling place to lay.

This is me giving my baby girl one last squeeze before we laid her in. It was one of the hardest things I have ever done and probably will ever do, in my life.

The beautiful casket my dad made, at the church.

One of the table displays

The cemetery

James looking down into the hole Kendall and his brothers dug. Thank heaven for children because they truly keep the spirit close and bring light to dark times.

After examining her grave he turned around and said, "hey, where's my grave?" You never know what children are thinking.

Kendall and his brother Spencer carrying the casket

Putting the casket in

Kendall's brother Jason and me trying to coax Bennett into throwing his rose into the grave. He wasn't having any.

This was a picture that caught James patting his dad on the back.

The boys helping to fill the dirt back in. I love that they did this and could be a part of helping put their little sister to rest.

All of the men present helped shovel a little. I even did one (with Kendall's help since I was still so fresh from surgery.)

We tried to take a picture of the casket but you can't read it as well as you could in real life.

It says, "Gracie Belle Ray" and under that it reads, "Sleep in Heavenly Peace" It was amazing.

This was obviously pre-roses but we put a little picture of our family in the lid. And of course she would need some toys to occupy her. The Whinnie the Pooh was actually this little bell rattle and when ever we would shake it at the hospital she would quiet down. I truly believe she loved music and that it brought her great peace.

Funeral Part 2 coming soon... 

The Almost Funeral

Well I burned all of the pictures to a disc and was prepped to do the funeral post and.... I left the disc at my parent's. So. Instead. Because I was going to include it with the funeral post, I wanted to share someone else's beautiful way of writing.

"A ship sails and I stand watching til she fades on the horizon and someone at my side says, "she is gone."
Gone where? Gone from my sight, that is all; she is just as large as when I saw her. The diminished size and the total loss of sight is in me, not in her. And just at the moment when someone at my side says, "she is gone", there are others who are watching her coming, and other voices take up a glad shout, "There she comes!" and that is dying." -Bishop Charles Henry Brent
I thought it was beautiful anyway.

And to all the anonymous. I can't say thank you enough.

Bundt Cake and Setbacks

My milk is gone today. Which is a relief but also makes me inexpressibly sad. As my stomach begins to fade and the milk dries, I find I just can't shake the feeling that all the little pieces of her are disappearing.

She was just like a shooting star, and then I blinked and she was gone. I keep all of the things she wore and touched at the hospital in a little memory box, inside a zip lock bag. Her little preemie sleeper smells so much like her and sometimes I feel like that's all I have left. Her sweet little smell.

The funny thing is, it isn't all that sweet. It mostly smells like the sterile pads they used on her back but for me, that has become the sweetest smell in all the world. Except for her hair. We washed her hair with lavender shampoo so I suppose her hair smelled the best. 

This is the part where people usually chime in with heaven and how we will be with her again, and I know. I know, I know, I know, I know. But that doesn't mean I don't feel terribly sad sometimes.

I'm two weeks out and I find I'm still paralyzed. I am not good with human interaction. Crying is almost as natural as breathing to me. And sometimes it doesn't help when people who know about our situation tilt their heads and get that look in their eyes and say, "How ARE you?"

I'm fine. I'm well. I'm surviving.

It gets a little better every day. And I don't say this because I don't want people to ask how I am and talk to me, it's just hard I guess.

By now, you're probably wondering what Bundt Cakes is doing in the title of this post.

I went to pick up a cake as a thank you present for Kendall's law firm. (He goes back to work Monday) It had been a pretty good day. We went to my little sister's high school musical and out to dinner with my parents, (kid-less! It was nice and quiet and I actually got to eat).

We made a quick stop to pick up the cake. Kendall and I went in and called in our order. Then a lady came at us with free samples and said, "You are going to love this!" Then she proceeded to bend down to my stomach (which is clearly not as faded as I had supposed), and said, "You will too, little one!"

Kendall kind of froze and I just smiled and took the sample. We paid for our order and she said, "Congratulations, honey!"

"Oh, thanks," I said and we left.

I cried the whole way home. Like I said, it's just hard I guess.

*hopefully next post will be the funeral

A Pause

It's been a week since the funeral and I was going to post about it today because it was really lovely and perfect, but I left the pictures at my mom's and so I think I will do it this weekend, instead.

I wanted to post instead about the countless blessings we have had during this time.

First of all, Kendall and I can't even really find the words to express how grateful we are for all of the donations to Gracie's account. Since we found out about her last year, up until her passing we have racked up literally thousands of dollars in debt. (Insurance? I say schminsurance. I swear it was with glee that the insurance company sent us our new statement for our new deductible this year.)
With just graduating from law school and trying to start up life again, we thought we were going to sink.

But I have tears in my eyes as I write that because of the generosity from family, friends, and sometimes complete strangers we will be able to cover much of our medical costs, the funeral costs (someone paid for it anonymously), and maybe even buy her a little headstone to replace the paper plaque we have now.

It is astounding and humbling to see how many people care and showed love for little Gracie.

It just leaves me speechless. Good thing I can still type.

Another aspect I wanted to write about is the amazing medical team at the hospital.

Our other hospital stays, while more routine because our babies were healthy, we have felt that we were mostly just tolerated by the nurses and hospital staff. When I would call for pills, or water, or whatever they would sound a little put out and often times I would have to call again after a while had passed.


With Gracie, it was a like a different planet. We delivered at the Texas Health Presbyterian Hospital in Flower Mound and let me tell the staff was amazing.

They put us in the biggest room they could muster and from that moment on we were more than taken care of. The director of labor and delivery, Nanette was amazing. She was like a mother to me. She loves photography and brought her camera and took over 200 pictures of the delivery and post delivery. I think she even assisted with the surgery in some way. I'm not sure how, but she was everywhere and everything all at once.

They kept us with the same nurses for my entire stay which was nice because I felt more stable that way. My day nurse, and night nurse were both named Jennifer, (which is so thoughtful that I didn't even have to think that hard to remember their names.;)  They did whatever I needed, anticipated whatever I did not and tried to help me smile through the hard times.

My night Jennifer knew that when I asked for grape juice I really meant a giant cup of ice with just a teeny bit of grape juice thrown on. She could always make me laugh.

My day Jennifer was just so intuitive and kind. My mom told me a story that at one point in time she was so overwhelmed that she snuck away into an empty room to cry. She said she was crying so quietly but all of a sudden, my day Jennifer popped in and said, "I heard someone crying and I've been searching and searching!"

She sat with my mom and hugged her and soothed her.

The entire labor and delivery nursing staff made this amazing scrap book with all of the pictures of Gracie they had. It's beautiful and I look at it all the time. They brought food to my family in the waiting room and extra chairs.

They brought an entire other bed into my room and put it right by mine, stuffing pillows and blankets in between so that Kendall and I and Gracie could lay together in her final moments on this Earth.

Gracie's nurse Tanya was so calm and good with Gracie. (Though Gracie didn't like her very much. She was so irritated that Tanya would take her away to change her back pad or give her a feeding. Geez Tanya.) And then, when Gracie started struggling she stayed. Her shift ended and she stayed all through the night with us.

I'm sure I've lost many of you by now, but I wanted to remember all of the little things that meant so much to me and my family. There are so many ways in which we have been bolstered up from meals, to cards, to flowers, to gifts, service, and helping with the funeral and we just can't say thank you enough.

For what we were facing and what we have gone through, it was the best possible way we could have done it. Love you all.

My Little Gracie Girl

It's the day after the funeral. I'm sitting here in bed and everything is quiet. In a way it is a relief to have everything over and in a way it is paralyzing.

It rained all night the night before I went to the hospital. I even took a sleeping pill but it didn't have much effect. My father-in-law drove us to the hospital and as soon as we pulled up I got out of the car and all but ran inside. I figured if I had enough momentum, if my legs gave out I would still end up inside the doors and they could figure out how to get me up to the third floor.

I got all hooked up and as they strapped my legs into these air pressure cuffs I had the distinct feeling I was being locked up so I couldn't make a run for it.

We had two hours to kill until the surgery so we watched The Addams Family and some cake decorating show. They served their purpose and distracted me until the doctor showed up. Then everything moved way too fast. It was all too fast.

They wheeled me to the OR and it was a blur of people telling me to do things and move places and they were about to insert the giant needle so I needed to curl my back and lean against the nurse. They told me to exhale and I did and as I exhaled the weight of it all came crashing down and I started sobbing.

The anesthesiologist kept asking me if everything was okay did it hurt. And I said no it didn't hurt. But it did. Everything hurt so much. If I didn't know better I would have thought my heart was going to explode.

My legs started going numb so they had me lay down. I didn't get sick this time like I did with Bennett. I just laid there shaking and crying. And everyone kept asking me if something was hurting and I kept saying no but it was. My entire being was hurting. This was the beginning of the end and it hurt like hell to know that.

I kept crying and my husband kept trying to wipe my tears but bless his heart he is such a boy and clearly does not know how to wipe tears when wearing mascara. I eventually swatted his hand away and just held it instead.

The entire room was expectant, like everyone and everything was holding its breath. The doctors were talking in low voices and I was shaking.

And then Kendall said, "There she is! There she is!" But I couldn't see her. "She is beautiful and she has dark curly hair!" he said. And I still couldn't see her.

She let out a little mew of a cry and the neonatal team whisked her over to a table to work on her. And all I could see was their backs. Just a bunch of scrub wearing backs. Kendall went to be with her and my mom came and sat by my head to keep me calm.

I couldn't see her, I couldn't see her. I just wanted to see her. She cried more and more. They had to wrap her back they said. Her legs were bent the wrong way they said but she was okay and breathing and beautiful.

And then all of a sudden they laid her on my chest. There she was. She was crying quietly but she was there and she was breathing and she was mine. I kissed her head over and over again and stroked her lovely hair. I've never had a baby with hair before all my boys have been bald and blonde.

She had a darling little button nose and perfect rosy lips. She was so soft. Her hands were perfect. She held my finger.

They tucked her inside my gown and she laid on my chest and slept. I think it calmed her a little to hear my heartbeat again.

They wheeled us back to our room and the hordes of family that loved her so much came filing in. Everyone got to see her and stroke her little curls but i wouldn't let anyone hold her. She belonged to me. she belonged with me.

The boys thought she was cute and looked at her for a moment and then they were off to play some game when she clearly wasn't going to do anything more impressive than sleep.

People eventually filed out and it was just Kendall and Gracie and me. Her breathing was a little strained so they put her on oxygen and they gave her a little feeding tube to see it eating would comfort her. It seemed to help. So I wrapped her up and we just slept and laid together the rest of the day.

In the middle of the night her back bandage started leaking the spinal fluid so they had to rewrap it. She seemed to be in pain so we eventually started giving her morphine and it made a huge difference. Her face finally relaxed and she seemed so much more content.

At 12:45 the next day she was officially 24 hours old. She had made it a whole day! We got her a little cupcake and sang her happy birthday. Her brothers blew out the candle. We were so proud of her. She hadn't opened her eyes yet though it wasn't for lack of trying. She would try her very hardest but we think she just didn't have the muscles to do it.

And then about 15 minutes after we blew out the candles she stopped breathing.

Everyone left the room except for Kendall and the nurses came in. We watched her little monitor for her oxygen levels and her heart rate. It began to slow. "What am I supposed to do?" I said. What was I supposed to do? How was I supposed to do this?

She turned purple and was quiet. We all held our breath watching this little darling. My little baby. And then she sputtered and I jumped. It scared me to death. But she was breathing again. It was labored breathing but she was breathing.

I held her close to me and cried and cried. This went on for 14 more hours. She would stop breathing and it would all start again.

It was the hardest thing I have ever done. It was horrible to watch her struggle. The worst part was when she would turn purple. I was useless. There was nothing I could do. I cried so much that my eye lids looked like they had been stung  by bees. I literally could not see at one point and they brought me an ice pack for my face.

I wouldn't let anyone else hold her unless it was when I had to get up to go the bathroom. And the whole time I was in the bathroom I would ask Kendall, "Is she still breathing? Is she still breathing? Is she still breathing?"

But she always was. She was always waiting for me. Kendall gave her a blessing and in the blessing, he asked for her to open her eyes so we could see them just once. And shortly thereafter she did. Just the right one. She cracked it open and we could see her beautiful blue eye looking at us.

In the early hours of the morning Kendall and I started to fade. We had been up for 50 + hours. We would take turns sleeping and watching.

At 3 I was woken up. It was like someone had nudged me but Kendall was sleeping and no on else was there. Gracie was still there in my arms fighting to breathe. The room was quiet and dimly lit. She made some cooing noises. I nudged Kendall to wake up and he did but he couldn't stay awake. He was so, so exhausted. I stared at my little baby girl and kissed her on the forehead. She cracked her little eye at me  and we stared at each other. Then she sighed this peaceful little sigh, and was gone.

She didn't turn purple this time or struggle. She just let out her perfect little breath and slipped away back to her Heavenly Father.

It was just me and Gracie, like it had been for that long nine months. I think she wanted that special moment to be between us and I will always be so, so grateful to have it. Me and my Gracie girl. Me and my baby.

Photos and Funeral

Here are some photos, as promised, of Gracie's first day. 

Also, Gracie Belle's funeral will be held at 2 pm on Friday, January 13, 2012.  The service will be held at an LDS church located at 902 N. Chinn Chapel, Highland Village, TX, 75028.  All are welcome to attend and join us in expressing thanks for Gracie Belle.  After the funeral, family members will proceed to the burial and dedication nearby.   

She has passed.

Gracie Belle finally stopped fighting and is now sleeping in peace.  Shortly after we celebrated her birthday yesterday (1 full day old), Gracie began to have episodes of difficult breathing that continued until she passed early this morning.  We were told that her heart would steadily falter as the ductus arteriosus closed, but we were not prepared for the number of times we thought we lost her.  In many of the early episodes, Gracie's head would turn blue (to me it looked more like purple) and stop breathing for about a minute or so.  She was connected to a pulse oximeter, so we frequently checked the monitor for heart rate and saturation.  Gracie's heart rate typically fluctuated between 130 and 160 when she was stable, with the saturation between 80 and 100.  During the episodes, we'd typically see the numbers decline rapidly until no readings were showing.  Then we would wait.  Without fail, Gracie would surprise us with what initially sounded like a loud hiccup, followed by a few gasps until she would sort of stabilize with labored breaths.  This process continued for 10+ hours.  She certainly lived up to her reputation as a fighter, but it was terribly traumatic for her parents.  As time passed, Gracie's "stable" numbers would decrease and her breathing became more labored.  She stopped turning blue as the night became later, and her face was more at peace.  We think some of the pain medication was helpful.  The episodes were less jolting, but continued the same pattern, until she finally didn't come back. 

As you can probably notice, this is not Emma, but instead you all are stuck with me today, Kendall.  I apologize to those I did not communicate with previously about our little girl.  At first, I just didn't know what to say or expect, and then I think I was paralyzed with inertia.  Finding the right moment to discuss Gracie with friends was very difficult and my sympathy weight, while significant, was not noticeable enough to give anything away.  

This whole experience has been difficult to process.  We haven't posted pictures here yet (mostly because Emma is the most tech savvy), but Gracie was not your average Full Trisomy 9 baby.  I still suspect she was mosaic, but she just looked beautiful to us.  The spina bifida lesion was very large on her lower back and her legs grew the wrong way (folded forward into her chest), but her face was all we could hope for in a beautiful little girl.  Gracie never fully opened her eyes, but we got a few treasured glances of her baby blues.  We just couldn't find a way to fix her heart.

We're working out the details for funeral arrangements, and will provide updates as soon as possible.  Thanks to so many for prayers and support.  The doctors and nurses at Flower Mound Presby were amazing.  They were/are more accomodating than we could have imagined.  We've certainly witnessed many tender mercies from God during this difficult time.  We love you all.

Kendall   

Our Gracie Belle

Gracie Belle Ray was born on a rainy, cold January 9th in 2012. 5 pounds, 9 oz, she is a beautiful little baby girl with masses of dark curly hair for Mommy to play with. We love her with all of our hearts and are making the most of our time with her. Thank you for your love and support and prayers. We have felt them and have been comforted by them in surprising and wonderful ways.

Stay tuned. Gracie Belle is a rough and tumble little girl with a sassy attitude. She will teach us all a thing or two! -Nana

Prep PS

I did want to put on here, at the great risk of being tacky or improper, that in lieu of flowers we would greatly appreciate donations to her medical fund. It's either that or pounds of chocolate. You decide. ;)

*Disclaimer* We obviously do not expect anything from anyone. We are so humbled and grateful for all the prayers and thoughts, and hugs. I just wanted people to know what they can do to help because that seems to be one of the the most common questions I get.

Prep

Two more days. It's pretty surreal. I spent the day with my mom cleaning, laundering, and doing all of this last minute stuff that just HAS to get done. I guess.

Yesterday, Kendall and I went to the hospital to meet people and see places. I held it together pretty well. Made it all the way to my car. It think the hardest part is that it just feels so close. Just one step in the other direction and we could be visiting the hospital with excitement instead of dread.

We met all of these nurses who were really nice. They showed us the room we would be in which was on the labor and delivery side instead of the recovery side so we don't have to be around all the babies. They put me in seriously the biggest hospital room I have ever seen. It will definitely come in handy if I need to do some cartwheels or something.

The nurses were nice. Don't remember their names or faces, but for some reason all the nurses kept telling me about how they have popsicles. And don't forget to bring my favorite snacks and Ipod, and robe, and books.

And I'm thinking. What exactly are they picturing me doing? Kicking back in my robe and slippers, playing Angry Birds on my Ipod while sucking down some popsicles and doritos?

Who knows. Maybe I will. I guess it will all depend on Gracie. Though I doubt if she passes quickly I'll feel like doing much of anything but sleeping.

They made it very clear that they would give me painkillers that would not make me sleepy so I could be alert and I said, "That's great. I do want to be alert but if she passes, seriously feel free to knock me out for a few days."

They all laughed tentatively and I said, "No, seriously."

Well I guess if they won't knock me out, at least there are popsicles.