Last week, I posted my Congenital Heart Disease Awareness Week schedule. I’m pretty much not going to shut up all week. And, I hope everyone will continue to listen and spread the word. We just might save lives.

Congenital Heart Disease is the number one baby killer, according to the Children’s Heart Foundation. An estimated 1 in 100 babies are born with CHD. CHD kills more children than all forms of childhood cancer combined.

Awareness can make a difference. Before Cora died from an undetected CHD, I had never heard of it. I don’t want that to happen to any other mother or father.

Better, yet we can do something. We can make a difference. Just by talking and learning about congenital heart disease. We can work together to make sure all babies get screened, raise money for more research to save more little ones, and support the hundreds of thousands of children and adults living with CHD. Currently NO test can find every CHD in every infant. But, let’s start somewhere. Let’s screen every baby with a pulse oximetry test and keep working hard to find new tests and save lives.

I’m guest posting all over the blogopshere this week, but leaving the blogs a surprise. Follow me on Twitter to learn where I’m at each day, or check back here. I’ll be editing this post with my guest post secret locations.

• Day One: The Bloggess Army
• Day Two: Garibay Soup
• Day Three: Baby Dickey
• Day Four: The Angel Forever and The Spohrs Are Multiplying
• Day Five: Atlanta Mother’s Guide
• Day Six: Momotics and The Bluemoon Girl
• Day Seven: Seven Hearts in Seven Days

Are you participating in CHD Awareness Week on your blog or Web site? Leave your link below! Read each other’s post. Spend a few moments learning about CHD, and SAVE LIVES.

Thanks Single Mama Central for the CHD Awareness Week button!

Add your post about CHD here, can’t wait to read

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P.S. To read great blog posts about CHD every week, visit http://www.blog4chd.com

You know the feeling when someone says something that makes you see the world in an entirely new and exciting way?

A non-mom friend made me realize just how much fun being a mom was going to be when I was just a few months pregnant.

Independence Day.

One of my best friends and I were talking about how I felt Cora kick for the first time during the fireworks.

“Aren’t you excited to see everything through your baby’s eyes,” she said to me. “You get to be excited for parades and all of the fun things from childhood. Holidays will never be the same.”

I realized she was right. Suddenly, I was hit by the force of my life to come. A huge smile came to my face at the idea of enjoying the park, or watching a silly movie with my child (we didn’t know baby was a little girl, yet). All the fun stuff.

I refuse to miss out on that. I can’t happily dive in and enjoy every moment as if Cora were here, and I were parenting her here. But, Ben and I decided to still do some of the plans we had for Cora. Like most expecting parents, we had many.

And, as most of you know, we love to remember her life with acts of good. So when I read about a Bloganthropy project to provide “Sew Much Comfort to a Wounded Veteran,” I couldn’t resist combining our love of acts of good with our need for child-like fun.

Ben and I made and colored Valentine’s cards for wounded veterans, with help from Cora. We attached the bows we’ve been making in memory of Cora. And signed them all from Cora. We didn’t tell the veteran’s her story. They’re in the hospital. All they need to know is that they were made with love from a little girl named Cora.

We’re going to deliver the 12 Valentine’s next week to a local VA Hospital.

The best part? Bloganthropy teamed up with Dollar Days to donate $50 in clothing to Sew Much Comfort for every blog post as part of the Valentine’s for Veterans project. A huge thank you to Dollar Days.

Sew Much Comfort makes adaptive clothing for injured veterans at absolutely no cost to the veteran. The organization depends on volunteer seamstresses and donated cloth.

The best part, YOU can help! Dollar Days will donate another $50 if at least 10 of you leave a comment on this post. So, start talking! What else can we do to support veterans who need adaptive clothing? Had you heard about Sew Much Comfort? Did you get a chance to check out their Web site? Can you believe Ben actually helped me make Valentine’s cards, pink hearts and purple smiley faces and all?

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Yesterday’s post, “Six little words” made me weepy all day. Reading your comments and the six word memoirs to your loved ones really touched me.

What helps me get over a case of the weepys better than arts and crafts? Thought I’d show you our bow making operation up close.

Ben and I worked so hard before Cora was born to prepare. Cora was a “surprise,” but we became responsible parents from the moment when we knew I was pregnant.

We spent my pregnancy making sure I was getting good health care and that our home would be ready for a baby.

Money was an issue, but we found ways to get by.

When Cora died, we couldn’t stop working. For so many months, we’d woken up thinking about what were going to do for Cora that day.

We wanted the funeral to be fitting of the shimmering beauty queen that was Cora so we worked like crazy to pull it off.

One idea someone had was to make everything pink, like her nursery. We decided to pass out pink bows for everyone to wear that night. We never stopped making those bows. We’ve been using them to tell Cora’s Story every since.

I even got Ben involved. He, of course, found some sort of bow making gadget to make the project manly. I have no clue what he’s doing there, only that it involves an old coat hanger, clamps, string, and glue. He make bows in a Ben sort of way

We ask people to wear the little pink bow in honor of Cora and to spread CHD Awareness. The cards tell Cora’s story.

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I really liked this article from npr.org.

It was about ‘Six word memoirs’ collected from writers, both famous and little known in a fourth installment called It All Changed in an Instant.

The premise: write about your life in six words. I immediately started thinking about Cora’s six word memoir. I wanted to write her one since she never got the chance.

Cora’s five days in six words:

Can’t get her off my mind.

After two hours and hundreds of revisions, I think that’s the best way to describe Cora.

Because who could ever forget her?

What’s your six word memoir for someone you’ve loved and lost?

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I was online when the first reports of the earthquake in Haiti started coming across news feeds. At first I read a 7.0 earthquake hit Haiti and didn’t give the news much thought. Then I started to read the first hand reports, children dead in the streets, trapped people screaming for help, and hospitals collapsed.

Panic. I felt physical pain. My chest constricted and tears streamed down my face. I told Ben about it. Explained to him how bad the situation really was and I noticed tears trickle down his sweet, caring face. My husband is the most caring person I’ve met.

I physically felt I was with the Haitian women that night. I was with them as so many of them watched their children die in their arms. I knew their horror in a way no one else could.

Their children were Cora. All of their children were my precious daughter dying or clinging to life in their mother’s arms.

Immediately, I went to work. Early in recovery efforts, social media became the best source of communication for the people of Haiti. I did alll I could to connect people with needs and get the word out about how dire the situation was and still in fact is.

I think about the Haitian women every day. As I type this, I picture more children dying in their mother’s arms from hunger and disease. One day, I hope to go to Haiti to comfort these women. I’ve looked down to my dead child in my arms. I know the terror, the feeling of helplessness, and the surreal thoughts that float through a woman’s head as her child dies in her arms.

Their children are my children. These women are my sisters.

I will go to them to comfort them when many have left. These women stay with me forever, and I will never forget.

Through my online work, I met people working to help the people of Iran. Iran executes people for being homosexual, I learned.

One day a woman sent me an article about a teenager executed in Iran for being gay. I thought of his mother. She’s probably too terrified of the government to even grieve in public. I don’t think she even got to say goodbye. Iran murdered a child. A teenager is not an adult. Iran is murdering children. And, getting away with it.

Every day, I read a story about a sick baby. Babies born with the same child killer as Cora: congenital heart disease. I don’t tell Cora’s Story just for her. I tell Cora’s Story for them, too.
For years, I’ve read articles about children in need and thought “how sad.” I’ve stopped just thinking I wish I could help. I’ve started to try to help with all my might.

While visiting friends, I play with their daughter. Their daughter is beautiful and so are they. Amazing parents. Attentive, loving, caring, warm. The daughter is so happy and so are they.
She is still mine.

I help them in any way I can. I tell the baby she is beautiful. I tell her parents how good they really are. We hug and give kisses. Sometimes I’ve learned the best way to help the babies is to help the parents. Offer support and a genuinely caring ear.

These children are mine now.

I’m a mother. The only child I gave birth to died, but I have many children.

They belong to me. I fight for each and every child.

Every baby is my sweet Cora.

I care for them like I care for her.

In the hospital with my baby in my arms.

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Dear Cora,

Yesterday you would have been two months old. I thought about writing a long letter to tell you how we celebrated. We asked people to act with kindness and compassion in your name, and I was overwhelmed with the response.

Mommy donated blood at the local Red Cross for the first time. It was so quick, pretty much painless, and easy. I’m going to be donating again and again. That night, we lit a bunch of candles and talked about you.

Last night, Mommy sat thinking about this letter, twiddling the heart-shaped necklace I wear for you, and realized that more than anything, I wanted to show you how we remember you everyday.

This is my birthday gift to you. We celebrate you each and every day.

The nurses at the hospital where you were born gave us this. The inside of the necklace made another heart and goes with you. You have a piece of my heart forever. I wear this every single day. Your dad and Aunt Megan bought the chain for me as a surprise last month.

I wear this pink bow on my jacket for you. Never take it off. I’ve also been mailing them across the country for others to wear in remembrance of you. Look in the background, there’s Daddy! Told you he’s always here, too.

This is you. We had you cremated. You sit on a bookcase in the middle of the living room. One day, we want to transfer your ashes to something a little more you. I hope to wear you in a locket around my neck. But, this works great for now. See the shadow box on the wall next to you? That’s my memorial to my Dad, your Grandpa Alan. He died when I was a little girl.

This is my pillow. The wadded up bunch of cloth is a receiving blanket you actually used! It still smells like you. I started sleeping with it just last week.

Look! That’s you on the fridge.

A few days after you were born, I changed the background on my phone to this picture of you and haven’t changed it. Almost did the first few days after you died. Wasn’t easy at first, but now I like having instant access to your pretty little face.

Dear Cora,

I took a break from writing about your five, sweet, life changing, live improving, and amazing days on this planet. I wish I hadn’t. I want every detail to look back and remember someday. I fear I’m already forgetting much.

So, when we left on day one, it was late, Mommy was starving and you were surrounded by all whom loved you most, grandparents, an aunt, and of course Mommy and Daddy.

By the time all the excitement cleared, it was the early morning hours of your second day and Mommy still hadn’t had anything to eat since she went into labor, on the 29th of November. Daddy rushed to Steak and Shake because nothing was open at 2 in the morning. While he was gone, I remember being exhausted, but I remember just staring at you.

Couldn’t stop staring at you. No one could have prepared me for how beautiful you would be. It was magical. You twinkled in my eyes, Cora. You glowed. You were out of this freakin world, to the moon and far away beyond that. A rock star of beauty. To this day, everyone I show your picture stares at it, captivated.

Daddy came back with the food, and I laughed and rolled my eyes at him when he started telling me stories. He LOVES to tell stories. He told me about how he gave the security guards at the hospital front desk cigars, how he told EVERYONE in the fast food restaurant about his new daughter, and also handed them pink bubble gum cigars. Honestly, I thought the bubble gum cigars were silly and so cliché when he told me he bought them. He was proud of them. He gave them to everyone.

Did you know he was at the baby shower we had for you? The baby shower is a big old long story for another post, but Mommy decided she just couldn’t stand the entire day away from him and insisted he be there. I got so many phone calls from my girlfriends and aunts and others the next couple of days. All were about HIM. How they have never seen a man so happy to help me open pink outfits. How he was attentive. How they were blown away at his excitement to be a father.

Daddy worked so hard to prepare for you. Here he assembles the crib you never got to sleep in.

He was excited Cora! He went to EVERY single one of my appointments for you. Don’t let any other baby fool you. YOU have the BEST daddy ever.

Back to that second day, the day is really a whirlwind now. Nurses, doctors, lactation consultants in and out. I never took my eyes off of of you. All I really remember is you.

I’ll never forget the way Daddy looked up at me at one point that day while he held you and you slept in his arms. He mouthed, “She’s sooooo cute.” And, the way he looked at you. Oh. That look stays with me forever. That was the look of your father being the happiest he ever has been.

Daddy is still there for you. Some days, Mommy can’t get out of bed. Daddy gently comes to her side and rubs her back, tells her she’ll feel better if she does. If it’s a particularly bad day, he’ll even help her get dressed.

He cleans while Mommy sits busily telling your story online. He hands her food when she forgets to eat all day.

Daddy is making pink bows because Mommy got too busy to keep up. We pass out the bows to spread your story. Not many men would make pink bows just because their wife asked them to do it.

He says he feels bad. He wishes he had my gift to write. He does not. But, Cora, don’t be fooled, he is here. He is here for you just as much as I am. He is the one behind all of this. He is the one who is really spreading your story.

Love,
Mom (and Dad)

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Dear Cora,

Just got an email from a brave and beautiful woman. Her baby died at seven weeks from an undetected congenital heart disease last year.

She apologized to me. She apologized to me for not fighting harder for you. She wishes she would have done more to make sure all babies are screened for CHDs before they leave the hospital. I think she feels guilty she didn’t do more to stop your death.

Now, we will fight together.

I don’t want to write any mother an apology email.

Mom

P.S. Anyone new to your story might want to know you and this woman’s baby were healthy at birth, showed no signs of sickness. I hope they read the rest of your story and help implement newborn screening for all babies.

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So pretty in pink

Dear Cora,

Am I ever glad to talk to you. I need you. I love you. You’re all that’s keeping me going right now.

People don’t quite understand right now how much mommy’s heart breaks.

I had a good talk with Grandma. I was telling her about my efforts, how I worried, what I wanted to do to help those poor moms in Haiti and those children and babies with congenital heart disease. How much I just wanted to help people.

She started to rattle on about taking care of me. Taking time “away” to focus on me. I agree I must take care of myself in order to take care of you.

But, I started to get mad. I know, I know, I’ve been spreading the patience message because of the patience you taught me. But, I’m still human, ya know?

I got worked up, yelling at Grandma, how could she possibly expect for me to stop. I’m still in shock. I can’t even look at the television and follow along. Friends call and rattle on about something. And, for the first time in my life I honestly have no clue what they’re saying. I don’t listen. Because I CAN’T listen. I can’t follow along.

I am in shock. My mind is not here.

I would love to be able to read a book or paint a picture.

My mind drifts off and becomes so smoky and cloudy. I catch myself staring brain dead out into space like the images of a drooling patient in a mental hospital.

The only thing that brings my mind back is you. Remembering how incredible you are. Then passing that on. Helping people.

I’m afraid if I stopped helping, my mind would drift off forever. Helping people keeps my mind here. It’s all that keeps my mind here.

I’m afraid I would leave, go somewhere and never come back. Just like when I collapsed on the hospital floor and almost decided to leave for good when you died. I want to stay here. I want to help.

As well intentioned as Grandma’s concern might have been, she is wrong. I wish I could take care of myself. I need people to understand that I don’t keep manically going for fun. It’s all that keeps me going. I can’t be forced to stop yet.

I am in shock. I cannot read a book. I cannot follow along the television. I cannot listen to people’s stories. I can’t focus on much.

I can focus on you. That is all.

After I cried to her and told her all of this, we made up. She does not stop me anymore. She wants me to stay here, too.

Love,
Mom

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