Tuesday, March 09, 2010

Layla Grace




I thought I would be writing about my baby today. He turns one tomorrow.

Instead, I'm blogging about another baby. One who I've never met - in person, anyway.

But that's the thing about the internet, isn't it? You don't need to know them to, well, KNOW them.

Layla Grace.

Maybe you've heard of her. Possibly you're one of the more than 43,000 followers on Twitter who've waited anxiously for updates from Shanna, her mother.

I knew of Layla Grace through Shanna. She used to post over on MommieswithStyle.com. I remember when her comments were simply about getting a new car. What baby names she liked.

The usual stuff.

That is, the usual stuff when your baby doesn't suddenly get diagnosed with Stage IV Neuroblastoma.

Layla Grace was a happy, healthy, chubby toddler when she lost her appetite, not entirely unusual for a 18 month-old. And then she became severely constipated.

Soon after, late last Spring, came the diagnosis we all fear - for ourselves, but mostly, for our kids: cancer. It wasn't good. It had metastasized, taken over, wrapped around her aorta. There was a tumor behind her eye and ones behind both ears. It was in her bones, her bone marrow.

The Marshes chronicled much of Layla Grace's battle on their blog and through Twitter, from which I got the above photo.

When you go back, and read some earlier posts, the hopefulness is painful - because you know the eventual outcome.

Layla Grace.

She died this morning. She was two.

There are thousands of kids who die every day. Not just from cancer. Mostly, from hunger or diseases related to that. From malaria. From war.

And yet, this particular child has touched so many people. Shanna took to Twitter (where she was trending #2 worldwide at one point today) and Facebook to not only help raise awareness for this despicable disease, but also to ask for prayers for her baby. If one person was moved, became closer to their faith, learned about Neuroblastoma, then Layla Grace's life would mean something to more than just her family. It HAD to mean more, because how else to comprehend the incomprehensible death of someone so young?

Was it just the image of a beautiful little girl, wearing a hat with the giant fuchsia flower on top, that attracted attention? Was it the family's strong Christian faith that drew people in?

For me, it was in part because of a small connection via the internet message board world.

I became riveted. Would Layla Grace beat this? How were Shanna and her husband, Ryan, handling this?

Why, why did it matter to me so much?

Because I could be Shanna.

I have little kids.

I could be the one hearing that shocking diagnosis.

I could watch my child go from an active, exuberant whirlwind to one who thinks it's normal to have a tube going into her chest. When a good day is one in which she doesn't vomit - much.

And then. Then. All you have left is to pray for a miracle, if you believe in that sort of thing.

Layla Grace came home and into hospice care.

There was a final outdoor photo shoot, where a pale and slender Layla Grace rests her head on her Daddy's shoulder while her mother and sisters gather around.

She was allergic to morphine and all its relatives, so it was difficult to manage the pain (Layla Grace had to have morphine AND an antidote).

The Marsh's last couple of tweets and blog posts were exceptionally heartbreaking and gave us all a glimpse into what it's really like to watch your precious, precious baby slip away.

"Layla's breathing is very shallow, her breaths are getting further & further apart. Laying next to her watching her sleep. She's beautiful." - Shanna tweeted on February 28th.

You learn that watching a child die isn't at all like you see in the movies. It's not comfort and peace. It's not quick.

It's seeing your child spend her last moments not wanting to be held because it hurts too much. It's crying more tears than you thought possible - but not in front of your baby, who is still aware of what's happening around her.

It's reading her favorite stories aloud as she sleeps.

It's wondering if the last time you saw her open her beautiful blue eyes was, in fact, The Last Time.

It's shaking your fist at G-d while still praying for a miracle.

It's counting her breaths, noting that she takes eight a minute.

It's feeling her feet get cold.

It's knowing.

"Layla went to play with the angels early this morning. Rest in peace precious Layla. 11/26/2007 - 3/9/2010."

It is now up to the rest of us to decide how we want to honor her.

For me, I'm truly appreciating my kids are healthy. That if the worst things that happens to X is his double ear infection then we are incredibly lucky.

I'm hugging my them more. Enjoying the noise of them. Watching them play and laugh and shout.

I'm holding my baby tighter, picking him up with joy when he cries for me yet again.

I do these things for Shanna, who can no longer do that for HER baby.

I do it for Layla Grace.

What will you do?

32 comments:

Aimee @ Ain't Yo Mama's Blog said...

Beautiful, beautiful post about Layla Grace. You had me in tears.

I think that, as moms, a story like Layla's is especially poignant and riveting. We all know how precious life is and that another day is never a guarantee, even for our children. A mother should never have to bury their child. But it does happen. For those of us with healthy children, every day should be a reminder that we are fortunate. We should all hug our children a little tighter today, but today should be no different than any other day. I thank God every day for my child. I hope I never know the pain that Layla's family knows right now. But all I can do is hope. All I can do is spend every day of my life enjoying and loving my child and never take him for granted.

-Aimee

Kathy Sprinkle said...

In tears over here. What a beautiful tribute. I only learned of Layla Grace this past week... under a rock in my own little mommy world. This is what we all fear. I am shocked by her death even though it was expected.

I will definitely hug my girl a little tighter today. Thank you for writing this marvelous post.

Kathy

Janine said...

I am going to hug my children too. Thanks for posting this.

Andrea said...

Way to make me cry. I wasn't sure I had more in me after hearing she died last night - but you captured the thoughts so perfectly.

Kristina said...

I am crying out to God, literally. I know that I am not supposed to be afraid, but I am so afraid. I can't imagine going through what this family has gone through. I pray that God takes this fear away from me. I pray that God comfort this family that has just lost the most precious thing. I pray that He be with the family of Penny, who I just read about last night with the same condition.

Please pray for Layla Grace's family and for Penny and her family. They just found out 2 weeks ago. You can read more about Penny here.

Kellene Maynard said...

Beautiful Post about Layla Grace. Thank you for sharing this story. I recently lost my son Leo this past July after I had a placental abruption. It is the worst thing watching your little one slip away, and knowing there is nothing you can do about it.

I had heard of Layla Grace before. I am aching for her family right now. Isn't it amazing how God uses these little ones to touch the lives of so many of us.

Since the death of our son I haven't taken one day for granted. I know how precious life really is, and I give thanks every day for my loved ones.

Thank you for sharing such tragic news and for writing such a beautiful tribute. Blessings to you and to Layla Grace's family.

Cheryl said...

Aimee - Thank you so much. Thank you for sharing your thoughts.Beautifully said. It's just unimaginable, isn't it?

Kathy - Thank you for your kind words. It's scary, scary stuff. I can't even go down that road in my thoughts.

Janine - Hug all THREE of them..

Andrea - Thank you..I'm still teary over here.

Kristina - Just awful about Penny and her family. I am keeping them in my thoughts and posted their button on the front of my blog.

Kellene - Terribly sorry for your loss. I have no words..You are in my thoughts..

MiniMe Mom said...

This is seriously the best blog post I have ever read. You expressed exactly what I am feeling and why I have been on my knees praying for the last few weeks.

It could be me.

It could be any of us.

I am doing the same things as you- holding my kids a bit tighter and for longer, not rushing through bedtime, naptime, storytime, etc.

Thanks for the awesome post.

Fashionably Organized said...

Cheryl,
Thank you for this post. Really I can't thank you enough for putting it into words. Last night I held Addison so close to me and couldn't imagine the absolute pain that Shanna and family were going through. There are no words, well besides yours. Thank you again.

Cheryl said...

Wow, Jamie - thank you! It's tough not to be moved by Layla Grace's story.

Candice - I know. I've been just gazing at X, and sometimes through tears..I feel so lucky all my kids are healthy..

Pamela said...

I just read about Layla on another blog. Heartbreaking. Your post is moving. God be with this family....

Lucy said...

Beautifully written! I know that since learning about Layla Grace a few weeks ago I have really been more present with my baby. Last night as I sang to him before I put him to bed I choked up thinking of Layla's mommy. I can't imagine not being able to tuck my little one in again. It's truly heartwrenching.

pillowthrowdecor said...

Beautiful post Cheryl. Many of you have said so well what we are all thinking. I have a big favour to ask of all of you if you are of mind to help get the word out about some fundraising. Many of us artisans have donated items and giving 100% proceeds or almost all net proceeds to help the Marsh family with the $100,000 medical bills that insurance didn't cover. this isn't meant to be a commercial we just want to help... somehow. Thanks, Christine Reid

http://icraft.ca/blog/part-1-paying-it-forward-for-layla-grace-charity-laylagrace-157.php

Jen said...

Cheryl, what a beautiful tribute to Layla Grace and her family that you wrote. I feel the same way -- every time I read about her, I am in tears. It is just heartbreaking. Thanks for this and going to go hug my kids again.

Cheryl said...

Pamela - Thank you so much for commenting..

Lucy - I know EXACTLY what you mean about being more present. I'm feeling the same way.

Christine - Thanks for your words and for the link. I tweeted it and posted it on fb. I hope everyone continues their good work to help more families like the Marshes..

Jen - Thanks for stopping by. And enjoy those hugs!

Natalie at Mommy on Fire said...

Cheryl, I hopped over here last night from SITS and was moved beyond words. I did not know the family but of course, saw her button all over the place (I'm new to the blogosphere) and was heartbroken by this story. Your post moved me and has haunted me since reading it last night. I'm going to post some thoughts related to this loss and will be linking back to your post. So beautifully written - well done!

Cheryl said...

Thank you so much, Natalie! Link away! ;) And thanks so much for stopping by. Much appreciated.

Kim said...

Seriously, Cheryl, that was the BEST post I have read in a while. I am in tears here because you captured the essence of what it feels like to be on the other side. Being a Mommy and reading about poor,sweet Layla and her family. Just fits. Period.

Hugs!
Kim

Marian Cutler said...

What a beautiful post. I, too, have been deeply affected and changed by @LaylaGrace as well as the courage and grace both Shanna and Ryan showed thru it all. Yet, I've been flailing since yesterday without being able to explain why. It's as you said, "it could be me". I have three little girls (11, 3 and 1) and I have a Sasha Grace. But, I think it's Shanna's Valentine's post about regrets that did me in...the one where she wishes she hadn't rushed Layla out from under her feet or longed for a quiet house. With her regret I am adjusting my life with my girls. I'll find new reserves of patience, I'll play with them past bedtimes (occassionally), I'll pick them up for the umpteenth time and I'll read "Good Night, Moon" for the seven thousandth time as if my girls are hearing it for the first time.

But, by the grace of God we all move through this world.

@MarianCutler

Cheryl said...

Aww, thanks, Kim! I appreciate you stopping by!

Marian - that one got me too. I actually linked it in a post on here back then. I was just thinking about it today, when it was SO loud in here with the kids laughing and shouting. Definitely better than the silence..

Lee the Hot Flash Queen said...

That was a beautiful post. You feel her pain on losing her child and it does make you cherish the children you have.

Nikki said...

I'm linking your post to my blog today. It was beautifully written and more than I could have ever put down. Thanks!

Shannon said...

I too blogged about the passing of precious Layla Grace...I am so glad she is no longer suffering yet my heart breaks for her parents/family who are grieving her loss...praying for them to be comforted by God as He only knows how to do!!! Thanks for sharing this post!

Randi said...

Perfect. Beautiful.

Cheryl said...

Lee - Thank you. It is heartbreaking, isn't it?

Nikki - Thanks so much for linking me. Much appreciated!!

Shannon - Yes, I'm glad Layla Grace isn't suffering anymore, but her family will always be heartbroken.

Randi - Thanks!!

Swirvin said...

As all of the pp's have said, you captured our thoughts perfectly. Layla's story broke my heart and I couldn't put a finger on why it touched me so deeply until I read your post. MWS is such a small community and one does start to feel like we "know" each other. And also, like you said, this could have been any one of us. I am so thankful for my three healthy babes.

Beautiful post Cheryl - thank you!

Brandy said...

As a mother of a 2 year old little girl, Wilkins, you captured my emotions exactly. I, too, have been blogging about Layla Grace and like someone else said it's hard not to have that fear in the back of your mind. Who knows what tomorrow will bring or what paths God will lay out before us? I honor Layla by spreading her story and by hugging my baby a little more.
I thank God everyday that I have a healthy child and pray that I never have to know the kind of pain Shanna has had to endure. I don't know if I would be as gracious in sharing my pain with the world or have as much strength and faith as the Marsh family has had. I am truly grateful to have been blessed to "know" the Marsh family through twitter, facebook, and their blog.

Beautifully written post...
Brandy

Kat @ www.TodaysCliche.com said...

You wrote a tremendously amazing post about Layla. I could barely read the tweets, and it was often too much to bear... but HOW selfish of me.

I have been thinking since I first read about her... "THIS COULD BE ME". Other times I asked God, "Why did you choose that family, and not mine? Is my family next?" I'm terrified of the THOUGHT of something like this afflicting my family.

What an incredible post that was riveting and much appreciated. I can't even imagine. I know you can't, either.

Cheryl said...

Jen - Thank you..

Brandy - thank you so much for stopping by and posting your thoughtful comments..

Kat - You're right, I can't imagine. I don't even want to go down that road in my mind. Sucks the wind right out of me..

Lynn said...

Beautiful!! Layla Grace definetly touched my heart in her last 2 weeks of life. I'm a different mother, friend, wife for it. There's days when I cry for her..a child I never knew. Hugs are tighter at my house these days.

God bless the Marsh family.

Ryan Marsh said...

Thank you for this, it made me cry. The fact that our daughter touched so many lives brings some meaning to her struggle. God bless.

NZMoores said...

Lovely post. I knew nothing about Layla Grace, but now I know everything. Prayers said for her family. Once you've had kids, you cannot be immune to stories like this. As a newspaper reporter in Waco, the stories that stayed with me were about the wee ones: the near drownings; the abuse; the murders. Thirty years later, I can still see their faces, and feel their parents' pain. Time to hold our chillens tight, even if they are 21...

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