Our Story of Loss

{Joining in with Shell @ Things I Can't Say for Pour Your Heart Out}

It's that time of year again; John and I are preparing for the 2011 March for Babies.
We do this walk every year, in memory of John's firstborn son, Johnathon Wayne ("Baby JW").

The post below originally appeared on October 1st, 2008. It explains Johnathon Wayne's short life, and the reason we do this walk. You can find more posts about Baby JW here.

Thank you for reading, and if you are able to donate to the babies, thank you from the bottom of our hearts. The widget to donate is at the end of this post, as well as on my left sidebar.
(feel free to share the widget!)

You may have noticed the March for Babies widget in my side bar. You may have seen a few references here on my blog to why we raise money for the March for Babies, why we walk every year, and why we are so passionate about this cause.
But today I'm going to tell the whole story. My wonderful husband gave me permission to share this story with you all, and to 'interview' him for this post, because it is so painful that he never before shared all of the details with me. I knew the basics, and not much more. Ten years later, it is still so incredibly painful. But to help bring attention to this cause, and in honor of "Baby JW", I'm helping him tell his story here.

My husband has two sons. One of them I mention often, Andrew, my nine year old stepson. But he has another son, Baby JW. Baby JW would've been ten years old on October 18th of this year. But his life was cut very, very short.
The pregnancy was a 'surprise', but he was a very wanted and happily anticipated baby. It was an uneventful pregnancy. They were thrilled to find out they were having a boy. Then, at a routine ob/gyn visit on October 18th, 1998, they learned that C., the baby's mother, was in labor. She was dilated 6 centimeters. They rushed her to the hospital and tried to stop the labor, but they failed. She gave birth to a baby weighing just over one pound.

His prognosis was uncertain at the beginning. He had respiratory issues, as most preemies do, and was intubated.

They knew it could go either way. But of course, they hoped and prayed that Baby JW would survive.

John's family came in from all over the state to offer emotional support. C and John stayed at the hospital night and day, even after C was discharged. John didn't go to work and they rarely left the hospital. They spent as much time with Baby JW as they possibly could.
At one point, the doctor pulled John aside. He told him that he'd seen something with Baby JW that he'd never seen before. Baby JW never moved....except when John came through the door. The doctor said that even before he was completely through the door, Baby JW started kicking and moving around, and didn't stop until John left. The doctor felt that Baby JW sensed John's presence, and he thought it was amazing.

There were good days and bad days. One day things would look up, the next day he would take a downhill turn. All they had were hopes and prayers.

On November 9th, 1998, C and John were sleeping at the hospital. It had been a bad day. The baby was losing color, and his oxygen sats were dropping.

They were awoken by the doctor and several nurses, all of whom were crying. They told them that the end was very near, and asked if they wanted to come be with Baby JW. John was not able to do it, but C went in. That was the only time she got to hold him. About five minutes later, she came out. It was over; they had lost Baby JW.

John doesn't remember a whole lot about the next few days. His family planned the baby's funeral, a small graveside service. I asked him how did he cope with the pain, but he has no answers. Somehow, he just kept going. It never goes away. It's very hard for him to see pictures or video of preemie babies, it takes him right back to that NICU unit ten years ago. We visit the grave frequently, with flowers, balloons, toys, and prayers.

John thinks of baby JW every day, whether it's remembering his short life, or wondering what he'd be like today.

Every year, John and I walk to benefit the March for Babies. It will never ease the pain, but it is something positive to do in honor of Baby JW, and it helps to prevent other families from enduring this pain. That is John's motivation.

Our walk is coming up November 16th. We don't walk with a team, just the two of us, and last year my kids joined in. We set a small goal; we're not a huge organization. Just a daddy and his family, walking for his baby that never grew up. The stepson I'll never meet. The big brother that Andrew will never get to play with. We will forever wonder who he'd be today.
We would greatly appreciate if you could help us this year. Every little bit helps. The March for Babies has done so much for this cause. Prematurity effects half a million babies & families every year. There are so many stories that are happier than Baby JW's, thanks to the March of Dimes. Can you help us, help other families have a happy ending?

*Note: This year the walk is March 26th, and we are heading up a team for our church members. The only changes I made to the above post were the names: I used to use pseudonyms but I changed them to the real names.*


Erin said...

Everytime I read that story I still tear up, and I am so grateful that my preemie lived to tell about it all, regardless of all his medical problems.

You both make such wonderful advocates for your cause! I hope someday John can find peace in his heart!

Amy said...

What a touching story!

Best of luck to you, John and your church team in your walk this year

Heather said...

I am so sorry for your husband's loss. Thanks for reminding me about the walk.

Erin said...

Oh wow. What a wrenching post and I am so sorry you all have had to go through this. I think the walk is a wonderful idea and I wish you luck!

April said...

Thank you for sharing this story...I know it will touch the hearts of many, just as it did mine.

Shell said...

What a heartbreaking story. But, what a beautiful way to remember the baby, to walk each year.

Debby@Just Breathe said...

It is so sad, so many babies die each year and there are way too many broken hearts in our world.
Keeping all of you in my prayers.

Amy said...

What a sad story, and unfortunately still too common; I gave my son his uncle's name as a middle name, he didn't get to leave the hospital either. *hugs* to you and John, thank you for sharing.

diane rene said...

thinking of you and John. I walked this walk with my cousins a few years ago, just for the cousin-time together. I may need to sign us back up!

C said...

thank you both for sharing your story. i know the pain never goes away, it becomes a part of you forever. i find it very special that jw would move when daddy came into the room. to me, that means he was trying to show your hubby that he knew him or recognised his voice. you are wrong about one thing tho, in my opinion, if you believe at all in god, whoever he is to you, you WILL meet jw one day cindy... and you both will be with who he was supposed to be, because he will be that soul and all the love you'll feel for him will erase all the pain you have now. i truely believe that. i have 2 babies in heaven or the next place, what ever we wanna call it, too. you arent alone, and one day there is gonna be one hellofa celebration of which we have never experienced before. so please try to remember that, when you are hurting and longing. and do what you need to do in order to pass the time until you are with him again. but keep it in the back of your mind that it is just a temporary separation, even when it doesnt feel like it. i wish i could help but i am still not working and we are just getting by... someday i will be able to. if it means anything, my prayers are with you.

Angelia Sims Hardy said...

That is heart breaking, but what a way to pay tribute to the little guy that so obviously knew and loved his dad.
I volunteered rocking babies in the NICU for many years. It was very rewarding and moving just like your story.

Anonymous said...

This is such a moving story. Losing a child is the most horrible ordeal anyone could face.

It's good that you and your husband are so passionate about supporting the March for Babies. You are helping to make a difference in the world.

Mamarazzi said...

sad story. we have close family friends who head up a team to walk every year and we have joined them for the past 4 years and plan on joining in again! may God bless everyone helping to raise money for this beautiful cause!

Brandy@YDK said...

thank you for sharing your story. i'm so sorry for your loss and pain.

Hyacynth said...

Such a sad story. My heart hurts that your husband and step son and your family will not know that precious baby this side of eternity. Thank you for sharing this story.