The Photographs

The Photographs

We had been talking about getting a fancy digital camera.

In 2003, there weren’t a million choices like there are now, and the choices that were out there were either expensive or Capital E Expensive. We’d done our homework and knew which one we were going to get.

But we had time.

After all, the baby wasn’t due until June.

Until it was time.

As I moaned and groaned in the L&D room, my husband gave his work-wife instructions on EXACTLY which camera it was. The lens size. The case he wanted. The extra memory card he would need so he could fill it with memories of this day. And to hurry. Instructions to take his credit card and hurry.

She came back with our camera.

Lucky for the camera, labor took for-freaking-ever so the battery had time to charge and Jason had time to read the instructions.

A couple hundred pictures were taken with that camera over the next few days and weeks. We had enough memory in the card and computer to hold many more days and weeks and months and years of memories.

Little did we know…

Yesterday morning I woke up to a notification that a photo had been shared on my wall. I figured it was a meme of some sort that I was tagged in so I could share with my favorite people so I wouldn’t have bad luck.

But no. It was a photo. A real photo. Of Charlie.

Well, I take that back. You couldn’t really see him because he was in a front carrier and it was from a distance. But it was a photo of him. And us. The three of us. A family. Because something that’s even more rare than photos of him are photos of all three of us together (there are now two).

Screen Shot 2014-10-09 at 4.14.37 PM

My friend’s mother in law had snapped the photo at Relay for Life and it’s spent the last 11 years in an album in her home. Now it’s headed my way and will be added to the handful of tangible memories we have.

And now I have to wonder if there are more pictures out there… maybe there are. Maybe I’ll be lucky enough to see them one day.

Until then, when the photos in my head start getting blurry, I have one extra one to pull out to remind me that he was once here with us.

Eleven. 11. XI. Part 2.

Eleven. 11. XI. Part 2.

I have seen death. I have held it in my arms. 

I have seen the beauty that comes after the darkness.

I have seen the light that shines brightly on those who remember. 

I have witnessed the transition from a perfect child to a perfect angel. 

I have seen death. I have held it in my arms. 

I have experienced the most perfect love. I continue to hold it in my heart.

 

I love Me wm

Happy 11th Angel Day, Charlie.

Group B Strep Testing: What We Know

Group B Strep Testing: What We Know

A little over 11 years ago, I was told by the OB I would “have a swab test taken and it will determine whether you need antibiotics during labor or not. There’s a common bacteria caused Group B Strep that can sometimes make babies sick and this will protect your son from it.

Later that day, my contractions started. They continued every 15-30 minutes for the next 9 days. They weren’t supposed to be “working” contractions yet. It was too early. I was only 35 weeks at the time. I needed to let Charlie cook for a few more weeks.

But the next Tuesday night, May 20, my labor kicked into gear. I spent the night in the hospital, water not broken, ambient making me hallucinate, contracting and being monitored. At 7am, the doctor came in to check me. Feet in stirrups, I remember asking my GBS status. They said negative. And then my water broke. Without anybody touching me.

I was negative. That was good. So that’s all I thought about that.

Labor lasted forever. Charlie was sunny side up so he was turned. Manually. Need I tell you how awesome that felt? His heart rate was hard to hear, so an electrode was screwed into his scalp. Hours went on and epidurals were administered. 14 hours after my water broke, Charlie was yanked into this world. Literally. Little bugger didn’t want to join us here.

But honestly? He wasn’t supposed to.

Four weeks later, we held a funeral for our 24 day old son. Group B Strep. That little bacteria that was tested for during pregnancy took my baby’s life.

Now. I feel like I have to tell you here that Charlie contracted Late Onset Group B Strep at 21 days of age. Anything after 7 days old is considered late onset and isn’t directly related to your GBS status during labor — it can come from labor OR just from “life.”

Group B Strep, Late Onset or Early Onset, is ugly.

But I want to talk about Early Onset GBS and Testing. According to the CDC,

A pregnant woman who tests positive for group B strep and gets antibiotics during labor has only a 1 in 4,000 chance of delivering a baby with group B strep disease, compared to a 1 in 200 chance if she does not get antibiotics during labor.

I don’t know about you, but I’d rather have the 1 in 4,000 odds. That means being tested and knowing your status and demanding antibiotics. Most hospitals and doctors are on track with CDC protocol, but sometimes they don’t explain what’s going on well enough. That’s where knowledge becomes power.

I want you to know that, just like the tests for chromosomal abnormalities, gestational diabetes, and amnios, you should ask questions about the very routine Group B Strep test. It seems to be one of those tests that gets done without much explanation. I mean, it’s just a swab.

But it’s serious.

You should know what the risks are if you don’t get antibiotics. You should know what the risks are if you wait until your contractions are 4 minutes apart to get to the hospital. You should know the risks if your water breaks or has been ruptured for more than a few hours. And you should also know that if you think that having a natural, home birth, or one with alternative treatments will prevent it, it won’t. If your baby comes out of your girly bits, YOUR BABY is susceptible to Group B Strep and all that entails. So get the antibiotics.

I WANT YOU TO KNOW THESE THINGS BECAUSE I DON’T WANT ANY MORE BABIES TO DIE.

I’ve written this post 4 times. This morning, as I opened my computer to write it, there was not one, but TWO emails from people who have recently lost babies to Group B Strep in my inbox. It pushed me over the edge. I’m mad that in spite of amazing tests there are still false negatives and we are still burying babies.

If you have say-so with your OB, ask for a more advanced test than most, a molecular test. An example of a molecular test in particular is the illumigene® GBS test from Meridian Bioscience.

Screen Shot 2014-05-12 at 11.52.12 AM

via GBSAnswers Magazine, Meridian Bioscience

Ask your doctor about the test.

Ask questions when you are tested.

Ask for the antibiotics, just in case they let it slip through the cracks.

Ask for more information.

And remember, ALWAYS follow your mommy instinct.

What Happens Next?

On May 23, Lucy posted a comment on Charlie’s Story. It moved me and prompted me to respond however I could.

I am crying for you. Devastated for you. Life is so beautiful, so heartbreaking. I don’t understand why these things happen. Perhaps you have a better idea than I? I want to know more about your journey. What happens next? How did you survive?

Lucy, there are no answers. And yet? There are a million answers.

Now I’ll speak of my story specifically. This is mine. Not Jason’s and not anyone else who has lost a child. Because grief is like that. You can’t speak for others. There’s no set way to do it except to go through it. Not around… through.

Let’s start at the beginning:

I am crying for you. Devastated for you.

Life is so beautiful, so heartbreaking.

Life IS heartbreaking. Losses like mine (infant death) and so many others (stillbirth, miscarriage, childhood death, etc) aren’t supposed to happen. At least that’s what our brains and hearts tell us. Life IS beautiful and heartbreaking. Just like there is beauty in death and loss. It’s not able to be seen at first, and honestly can take years, but there IS beauty in death.

I don’t understand why these things happen.

I don’t either and quite honestly, it pisses me off. I like concrete answers to specific questions.

A common response to someone losing a child or young adult is “why did this happen? They’re such good people.” To which I respond, “then were we BAD people?” No. Not at all.

These things just happen. They’re not supposed to happen but they do. They happen. It sucks and they happen.

What a cop-out answer, Jana.

I do personally believe, even though it’s one of the worst things you can say to a person who has lost a child, that things do happen for a reason.

I believe I was chosen to give birth to a child who wouldn’t live to see a full month on this earth. I believe I was chosen to carry this heartbreak. I believe Jason and I were chosen to be the parents of two who only have one here on Earth.

I believe these things like I believe the sun is hot and the grass is green.

I want to know more about your journey.

The journey for me has been a strange one. The Grateful Dead had it right when they said, “What a long, strange trip it’s been.”

Over the course of probably the next 24 months after Charlie died, and that included the pregnancy and birth of Henry, I went through the five stages of grief. I was angry, in denial, depressed, bargained and then finally, accepted. I rolled through them all, sometimes all in one day, sometimes for weeks at a time.

I questioned it all. How did Charlie get sick? Was it my fault? Surely this is my fault. Research. Question. Research. Feel guilty. Question some more. Oh, there’s a chance it COULD have come from me, but also a chance it could have come from life?

Then I chose life. I chose to believe it wasn’t my fault. Sure, there was a chance it could have been, but did I want to live the rest of my life with the guilt of thinking, without knowing for 100% sure, that it was all MY fault? No. So I chose LIFE.

I don’t remember much about my pregnancy with Henry or his birth. I’m not sure I wanted to get close, but once he was here, it was different. He looked like he was here to stay. He didn’t have the wise eyes and other-worldly soul. I did everything I could to protect him from the evil of GBS and from the evil of anything else that could hurt him.

But then, I carried on.

For 11 years, I’ve carried on. I’ve talked about Charlie. I’ve talked about death. I will talk to anyone openly and honestly about how I feel. Why? Because it’s my story. It’s woven into my life like the veins that carry my blood. It makes me breathe and validates that he was here and he was important.

Over the years, I’ve questioned my faith. I’ve wondered what kind of God would let this happen to a family and why was it MY family. I’ve been angry at God and wanted desperately to believe in something else. Anything else that would explain WHY.

But I believe in God and Heaven and that when I get there I will be reunited with Charlie. He’ll be waiting in a rocker for me, having saved my spot for many years. He’s waiting. Just like I am. Charlie is my protector. I feel him surrounding me every single day. He shows me signs when I need to know I’m not alone. He drops light into my world when it starts to feel dark. I believe in his pure, innocent, child-like spirit.

How did you survive?

One day at a time. One step at a time. One foot in front of another.

I’ve said this before. You survive because you have to.

Nobody wakes up one day and says, “You know what? Today would be a super day for something horrible to happen.”

We don’t get to choose these things. Maybe the universe does. Maybe God does. Maybe shit just happens. But at any rate, we survive because we have no other choice.

Well, we do, but the other choice is never a pretty one. Many people who lose a child do end up on this side though. Suicide, divorce, crippling depression… they’re all very normal side effects of horrible losses. But they don’t have to be.

(If you’re feeling hopeless or suicidal, please talk to someone. Call 1-800-273-8255 for help 24/7.)

What happens next?

Life happens next. Again, I speak only for myself.

I choose to live life to the fullest and honor and remember my son’s very short but very important life each and every day.

People will continue to ask these same questions, Lucy, and I will continue to answer them. Others will continue to not know what to say and be scared to ask for fear of making me remember.

I hope what happens next is that I live long enough and have my memory long enough to never forget the feeling of a beautiful 6 pound baby in my arms, taking his first and last breaths against my heart.

That’s what I hope happens next.

Eleven. 11. XI.

Eleven. 11. XI.

CharlieBlue

Two days old, May 23, 2003

Eleven years ago today, you graced us with your presence. You caught us off guard by coming a little bit early and taking forever to be delivered.

You caught us off guard by being so aware, so beautiful, so wise. From the moment you arrived, your eyes told your story.

They were wide and bright, inquisitive and alert. They knew too much.

They knew you had a short time.

When I look back at your pictures, so very few of them, your eyes are always open. I see wisdom and love and know that you lived the life you were meant to live.

It wasn’t to be a long life, but it was to be long enough to touch hundreds and thousands of hearts. It was long enough to leave your mark.

But no matter how many hearts and lives you touched, I would trade it all to have you back.

Happy 11th birthday in Heaven, baby boy. Every breath I take is for you.

**************************

For more information:

Late Onset Group B Strep

Charlie’s Story

 

 

 

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