Memories…

Memories.

They flood back in droves. Sounds, smells, conversations. My heart flutters, bordering on panic. I feel the buzzing in my head get louder.

The memories have been suppressed for months now.

Until yesterday.

Until someone walked into a school in Connecticut and crushed the hopes and dreams of a couple dozen families. Hundreds of lives — CHANGED. Never to be the same.

I have cried for them. I have cried for the parents who have gifts wrapped under trees and who now have to choose caskets instead of Wiis and Barbie dolls.

I have cried for me and my husband and my son and for the anger that fills my heart when I think about all the babies and children I know who won’t fulfill their potential.

I’m at a loss for words, really.

I’ve written many times about finding your Roses in December, most recently at Still Standing Magazine. Imagine my surprise when I realized that our climbing rose, that hasn’t bloomed in weeks, has bloomed during a week where we have had freezing temperatures.

It’s a reminder to me that life, like nature, is precious. We can survive the worst, just as the rose can survive the cold. But just when we think we can’t go on and that life will never look the same, we’re reminded that there is hope. It may feel far away, but there is hope.

To the parents and families who have lost so much… I pray that you have Roses in the weeks and years to come. I pray that you find some peace over time. I pray that you feel the love from people around the world who are wrapping you in their arms. I pray for your community, that it may heal and learn to trust again in time. I pray for your other children and the other children of the community, that they may grow up without feeling guilty about it not being them instead. For you I pray, as a mother who has had to choose a tiny casket and a mother who will never feel her child in her arms again. For you I pray for Roses. Amen.

Pin-Up Girl

Each of us has a story.

You have one, you have one, even YOU have one. (yes, you, the one in the back saying “I’m just a normal girl.”)

If you’ve been around very long, you’ll know that from 2010 until just recently, I worked on a group site called Band Back Together. It was a labor of love, one that started from a little seed in Becky’s brain, and one that came to life quickly and successfully.

People come from all walks of life and submit stories – THEIR STORIES – of life, love, loss, abuse, addiction, special needs, special circumstances, and both hope AND fear. The stories are real. The stories are raw. The stories are LIFE.

For 2013, Band Back Together has produced a beautiful calendar. This calendar will feature the faces of different situations and conditions. There’s Bipolar, Domestic Abuse, Post Traumatic Stress Disorder, Special Needs Parenting, Organ Donation, and others.

I don’t want to give anything away, but Jason and I will be featured as the Faces of Child Loss.

While I wish our situation was different and I didn’t have to be the pin-up girl for losing a child, it’s the hand that Jason and I were dealt. We play that hand and sometimes it’s an even an honor for us to be able to share our story and share our Charlie with others around us. I feel like we offer hope to those who have suffered a loss, helping them realize that life CAN go on. It’s not easy and it surely takes time to be able to see the other side, but life is still beautiful, even through the sometimes foggy lens of grief.

Here’s where I ask you to buy a calendar.

But I’m not asking for me. Though I think you’ll love having a picture of me and my adorable husband on your wall for the entire month of May!

It’s for the Band. It’s to help continue providing a safe place for people who feel like they don’t have a voice, to have a voice. It’s for those who want to speak their truths without fear. It’s for some of you. It’s for all of us.

In addition to selling the calendars, Band Back Together will be offering calendar bundles. The bundle includes a calendar, BB2G stickers, BB2G temp tattoos, and while supplies last a BB2G button as well. For just a few dollars more you’ll be able to snag some cool extras. We have enough supplies to offer the bundle during pre-sales, and will continue to offer them until supplies run dry. We cannot guarantee the supplies will last through regular sales.

Order now by clicking on this pretty little picture. Put my name in the comment section so they know I sent you!

Photobucket

BUY A CALENDAR NOW!

 

Proceeds from the 2013 Band Back Together Calendar will be used for outreach efforts in 2013. Band Back Together runs as a nonprofit, meaning we do not profit from any incoming funds. All proceeds go directly into Band efforts such as server costs or outreach efforts. As of this posting, federal nonprofit status has not been received, therefore purchases or donations are not tax deductible at this time.

Make Today Count

The other day, I woke up with a tingle in my skin. I wasn’t real sure why, but it just felt funny. I blamed it on the vertigo.

On the way to work it was raining. Big drops falling from the sky, high wiper weather at times.

With every drop that hit the windshield, I could feel the prickles on my skin.

My nerve endings were on fire. So close to the surface, the slightest movement tingled.

The radio was on the news talk channel.

War this.

Economy that.

Hate here.

Unemployment there.

A high school boy collapses at school and dies a few days later.

A middle school boy collapses and is in critical condition.

Mothers lose sons. Fathers lose their pride and joys. They pick out caskets instead of cleats and pads or birthday presents They sit at bedsides willing their child to wake up.  

Cousins and friends and neighbors grieve. Grandparents wonder why it wasn’t them. They would surely trade places in an instant.

Families are forever changed. All that’s left are memories, an empty seat at the table, and a giant hole in the hearts of so many.

Tears filled my eyes and burned as they fell down my cheeks. I turned the station.

All day, my skin tingled.

Late in the day, a Facebook post from my high school said that a girl I went to school with had died.

My heart fluttered and ached. My own realization that tomorrow is not promised was underlined.

Too much loss.

It’s just too much some days.

Some days grief is like nerve endings that feel every whisper of a breeze and every single touch. The contact can be feather-soft, but the lingering sensation it leaves feels endless.

I want to scream for it all to stop. For children to stop being taken from parents. For people not to suffer.

But that’s not the way it works. We’re not promised tomorrow. We’re not even promised five minutes from now. Nobody even promised that our children are ours to keep.

That’s not fair.

For now, I choose to live life out loud. I may not go skydiving or climb Mt. Everest, but I will try my best to live like tomorrow may never come.

I want my days to count.

How will you make every day count?

Sitting On My Shoulder…

Today was a second “first day” at Buck Jones for me.

Nearly 14 years ago, fresh out of college and freshly married, I started working at the Woodstock location. There were no nerves at all. I was young, smart, and probably pretty full of myself.

A lot of things have happened, good and bad, in the last 14 years. Some of them caused me to be a little anxious. Some things gave me extra confidence in certain areas. A few of the things made me feel very unsure of myself. But at the same time, I feel very confident in my ability to do this job.

This morning, after dropping Henry off for his first day of 2nd grade. He wasn’t nervous — after all, he’s pretty young, smart, and full of himself! I didn’t have a whole lot of time to think about what he was doing today because I knew he was having a great day. He always does.

But I felt my little angel sitting on my shoulder. I knew he was with me. Charlie was perched in his usual spot — right on my left collarbone, snuggled up against my neck, in his blue and white seersucker gown.

There were a few times today when I talked to vendors I had worked with way back when and they asked what I’d been doing all these years. “Raising a family” is of course, my standard answer. It’s not the time to lay it all out. I’m sure it’ll come up in time because it’s a part of my daily life. I talk about it and it’s just not a secret.

I came home and picked Henry up at his new after school program. He loved it. I knew he would.

But when I pulled out his work and looked at his “All About Me” page that he filled out at school, I realized I was right when I knew Charlie  was with me. He was with both of us today.

family image

I’m always amazed when Henry draws his family for others and includes Charlie (always bigger than him and with wings). It makes me happy and at the same time, extremely sad that I didn’t have a 2nd grader AND a 4th grader today. But I don’t question it. I just hold on to the knowledge that we’re doing the right thing in making sure Henry knows that his family is bigger than it seems.

It’s not surprising that while he was with me today, he was also with Henry. They’re connected in ways I’ll never understand.

Our family will continue to celebrate firsts.

And our boys will celebrate many more firsts together… as brothers… in their own way.

 

July is Group B Strep Awareness Month

I struggle with being extremely vocal about Group B Strep awareness. I would love to scream, “DANGER DANGER” from the rooftops, but for me personally, I don’t like to frighten people.

I struggle with knowing when to step in and say, “You really should head to the doctor since your baby has x, y and z symptoms because those are signs of GBS.” I’ve done it a few times on Facebook and Twitter and in real life, but the bottom line is, I don’t want to say anything because I don’t want people to think their baby is going to die just because mine did.

I struggle with being able to spout statistics, because statistics are bullshit. Yeah, the chances of a baby contracting early onset GBS are slim. It’s even more slim to contract late onset GBS. And it’s downright rare for a baby to die from late onset GBS. But when YOU are the statistic – the rare one – it’s often hard to tell someone of your experience without causing sheer panic.

I don’t struggle with talking about grief. But I do struggle with talking about Group B Strep.

July is Group B Strep Awareness Month.

So I’m here to talk about it.

For those who don’t know and who may stumble across this page, let me first tell you about Group B Strep.

What is Group B Strep (GBS)?

Group B strep (GBS) is a type of bacteria that is naturally found in the digestive tract and birth canal in up to 1 in 4 pregnant women who “carry” or are “colonized” with GBS. Since levels of GBS can change, each pregnancy can be different. Carrying GBS does not mean that you are unclean. Anyone can carry GBS. (Quoted with permission from Group B Strep International)

When will they test me for Group B Strep and what does that even mean?

CDC’s guidelines recommend that a pregnant woman be tested for Group B Strep when she is 35 to 37 weeks pregnant. The test is super simple. It’s simply a swab of the vaginal area and rectum. Results are typically back at your next appointment. At that time you’ll be told whether you’re positive or negative.

A pregnant woman who tests positive for GBS 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.

Any pregnant woman who had a baby with GBS disease in the past, or who has had a bladder (urinary tract) infection during this pregnancy caused by GBS should receive antibiotics during labor.

What’s the difference between prenatal onset, early onset and late onset Group B Strep?

Prenatal onset of Group B Strep happens before your baby is born.

Early onset relates to cases from birth to 7 days old.

Late onset typically relates to cases from 7 days old to 3 months (or later in some cases, but that’s the typical timeline for GBS to infect a baby).

 What do I look for?

Symptoms of Prenatal Onset Group B Strep:

    • decreased fetal movement or no movement after 20 weeks
    • unexplained fever in mother — signals infection

Once born:

    • High-pitched cry, shrill moaning, whimpering
    • Marked irritability, inconsolable crying
    • Constant grunting as if constipated
    • Projectile vomiting
    • Feeds poorly or refuses to eat, not waking for feedings
    • Sleeping too much, difficulty being aroused
    • High or low or unstable temperature; hands and feet may still feel cold even with a fever
    • Blotchy, red, or tender skin
    • Blue, gray, or pale skin due to lack of oxygen
    • Fast, slow, or difficult breathing
    • Body stiffening, uncontrollable jerking
    • Listless, floppy, or not moving an arm or leg
    • Tense or bulgy spot on top of head
    • Blank stare
    • Infection at base of umbilical cord or in puncture on head from internal fetal monitor

What is the outlook for a baby who contracts GBS?

Babies can be infected by GBS before birth and up to about 6 months of age due to their underdeveloped immune systems. Only a few babies who are exposed to GBS become infected, but GBS can cause babies to be miscarried, stillborn, or become very sick and sometimes even die after birth.

GBS most commonly causes infection in the blood (sepsis), the fluid and lining of the brain (meningitis), and lungs (pneumonia). Some GBS survivors have permanent handicaps such as blindness, deafness, mental challenges, and/or cerebral palsy.

(Quoted with permission from Group B Strep International)

Now we’re all caught up on what Group B Strep is. So here’s where I’m honest with you.

I don’t believe in scaring people. I believe in educating people and arming them with the information that will allow them to make informed decisions.

Unfortunately, I can’t make decisions for everyone. If that were the case, nobody would ever have their membranes stripped, internal exams after finding out they were GBS+, scalp electrodes during labor, long labors without c-sections, or choose to not have antibiotics during labor with a positive GBS status.

In short, I would put everybody in a GBS-proof bubble.

As long as there is life on Earth, there will be baby loss. There will be mothers dying during labor, babies taking one breath, babies spending weeks and months in the ICU because of life-threatening conditions. As much as we want to eradicate it, it’s a fact of life.

I’m armed with more information about GBS than most doctors, but that doesn’t mean that you shouldn’t talk to your doctor about Group B Strep. Because the incidence rate is smaller and smaller, a lot of doctors do the test at 35-37 weeks and just throw out the positive or negative results without much of an explanation. Make them explain it to you. Talk to them. Understand it.

Use your mommy and daddy instincts and USE YOUR PEDIATRICIAN. That’s why they went to high-dollar schools for a bazillion years. To help you when you need them.

The baby does something you don’t like or understand? Call them. Go in.

BE THAT MOM!

I can’t underscore this enough. YOU know your baby better than anyone and have to follow your instinct. If it says, “call the doctor,” then by God, call the doctor.

Your gut is rarely wrong.

Anyway, in honor of Group B Strep Awareness Month, I want to answer your questions.

Leave a comment (or Tweet it to me or ask me on Facebook) with any question about GBS you may have. If you don’t want to do it publicly, email me at janasthinkingplace@me.com.

I’ll post a few times this month with answers to them. And together, we will make the world AWARE OF GROUP B STREP!

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