Cora's Story: Congenital Heart Defects, Grief and Advocacy

The post every pregnant woman should read. (Share this, save lives)

noreply@blogger.com (Kristine Brite McCormick) — Sat, 02 Sep 2017 10:14:00 +0000

I decided to write it all down. Everything I wished I'd known about the most common birth defect. I know when I was pregnant, reading information about SIDS or car seat safety was tough, but after realizing that knowledge might save my child's life should they have one of those conditions, I powered through.

Reading about CHD is something every pregnant woman should take a few moments to do. Knowing the signs and symptoms and researching detection methods saves lives.

I know sharing Cora's Story with pregnant friends and family isn't always easy. But, I hope that you'll help. That you'll share this post (share on Facebook or Twitter using the links in the footer). No family should ever be blindsided by the most common of all birth defects, occurring in about 1 in 100 births. Just remember, I'm not a doctor. Just a mom.

I present to you, a crash course in congenital heart defects (CHD), or what I wished I'd known about CHD before giving birth.

I found out after my daughter died that she had a congenital heart defect. When I first heard about it, I thought it must be something rare, for me, an educated woman that read everything I could while pregnant to no nothing about it. Turns out, it's not rare at all as far as medical issues in children go. Congenital heart defects are a leading cause of death in children and infants. Some places, name CHD as the leading cause of death in infants. But, and this is a huge but, most CHD children live. In fact, medicine has improved outcomes for these patients so well, that more adults currently live with CHD than children. It's a hidden disability for these adult and children patients.

About CHD
Over 35 different types of CHD are known, and each defect looks a bit different in each patient. So, each CHD heart is like a snowflake, no two alike. Chances are you know someone with a CHD. Some defects require nothing but an extra doctor's visit every few years, while some are more serious and require a series of surgeries. Often someone figures out that they or their child has a CHD after talking to me about Cora's story. They just weren't aware because the doctor never used the term "congenital heart" with them.

While we're on the subject, congenital heart means simply born with, so a person with CHD is always born with the issues.

The exact cause of CHD isn't know. There's a genetic link, but CHD can happen to anyone. For example, there's no known CHD background on either side of Cora's family.

Nothing detects congenital heart defects all the time. But, early detection improves outcomes. The defects can go undetected into adulthood.

There's not really a cure for CHD either. Surgery can mend the heart and medications can keep things under control.

This makes CHD even more scary. Awareness doesn't mean much unless there's a reason to make everyone aware. And, there are things that pregnant woman can do to reduce the odds of having a CHD baby, having a child go undetected, and picking up on the signs of a CHD.

While pregnant
Take a folic acid supplement. In fact, talk to your doctor about starting this before you're pregnant. There's a link to folic acid deficiency and CHD.

Don't smoke even if you're thinking about getting pregnant. Quitting when you find out isn't really an option. The heart develops early in pregnancy.

You know the ultrasound? The big one around 20 weeks where you find out if you're having a boy or girl? It's also to look at the baby's development. Ask your ultrasound technician about the heart and if all chambers are present.

After birth
Ultrasounds, fetal echos, and doctor suspicion after noticing irregular in utero heart rates all lead to detection. But, many defects aren't found until later.

Ask if the doctors or nurses hear a murmur. A murmur often occurs and can be harmless, but can signal something else.

Request your child be screened with pulse oximetry after 24 hours of life. Your baby should be calmed and anything below a 95 might signal a need for extra testing. Talk to your doctor about adding the pulse oximetry in while your child is at the hospital. Some hospitals routinely use this simple, cheap, noninvasive test, but others don't. This easy test saves lives. Ask for it.

Memorize warnings signs of a possible congenital heart defect. In a newborn, dusky coloring, turning blue, trouble feeding, rapid breathing, sweating along the forehead, and tiring easily are warning signs. Report any symptoms to a doctor and request an examination.

Please share this important post to bring us one step closer to making sure every mother, father, and expecting parent knows about the most common birth defect.

Transferring to WordPress: Google Friend Connect Followers, Please Read

noreply@blogger.com (Kristine Brite McCormick) — Thu, 16 Aug 2012 23:35:00 +0000

I've said I was going to do it for the past two years at least. I've finally started the move. I'm packing it up and moving this site to a self-hosted Wordpress site. All my other sites are there.

This site has long grown out this space. It was after all, at first my pregnancy blog when I was expecting Cora. I've started this move several times, but put it off for a few reasons.

1. I'll lose my Google Friend Connect followers. If you're following me on Google Friend Connect, please like the Facebook page, sign up to the RSS feed or continue to follow this blog.

2. I might lose some of my "Google juice." I've worked hard on this site, and could potentially experience short term loss, however in the long run, Google loves Wordpress sites and some of the features that I can use there.

3. After three plus years here, it feels comfortable.

Here's to a new home for Cora's Story. If all works as planned, you shouldn't have to do anything to keep following this blog, all of my old content will be transferred to the new site and the URLs will be the same (corasstory.com and corasstory.org).

Wish me luck!

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

Moving from "Call Me If You Need Anything" to Calling the Bereaved

noreply@blogger.com (Kristine Brite McCormick) — Thu, 16 Aug 2012 03:28:00 +0000

My life has been one of great loss. My father when I was a child. Cora nearly three years ago, my grandmother and father-in-law this summer. However, death isn't something you grow used to it. It's not something that gets easier to handle with more loss.

When someone dies, people want to help. And they do. I know people are good because I've been through enough loss to know. The best of humanity comes out when you lose someone.

When Ben's dad died, people showed up with food, stories and a shoulder to lean on. It's been amazing. They've been great.

I'm going to talk about something today I want to be careful presenting. It's something I do too, but I hope it's something to think about.

We get a lot of "call if you need anything." It's super sweet. Truth is, we don't know what we need. We probably won't remember you saying so. Sadly, some of the people coming around, we might not ever see again. It's just how it goes.

I know people want to help. I get it, and I'm so grateful and appreciative.

However, when someone dies, just think about how you can help and do it. We won't call people for things, it's just not how we are.

I know people become afraid to call or to stop by fearing they're imposing or interrupting. You won't be.

Call us.

Tell us you'll call us (and by us I don't mean this situation in particular with Ben's dad, I mean the bereaved in general). Set a date you'll call us and do it. Even if it's a short phone call. Even if we don't answer the phone. If we don't answer. Call again in a few days.

I'd love to see people change the normal, "If you need anything, call me" to "If you need anything call me, and I'll be checking in on YOU." Don't put it on the bereaved to reach out.

If you really want to help, keep checking in.

Call us. We might not answer today or tomorrow or next week, but we will see that you called, and one day we will answer.

Thanks to everyone that's been there for us. Again, this isn't a personal post, it's about something I've noticed with grief in general. I just want to help grieving people.

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

Remembering Cora's Grandpa

noreply@blogger.com (Kristine Brite McCormick) — Tue, 14 Aug 2012 05:25:00 +0000

What follows is the eulogy read at Cora's grandpa's memorial service yesterday. It's long, but I want to share his life with the world. Thanks to everyone that's sent notes, cards and has kept the family in your thoughts.

Norman Palmeter McCormick was born at home in Detroit Michigan on December 27, 1947. His mother Cora and father John had five older boys together.

When Dad was young, the family largely resided on his grandparents’ farm in Vassar, Michigan, a little town just outside of Saginaw. Dad used to share stories of working on the farm and often talked about how strong his mother was for raising six boys, all less than ten years apart in age. His brothers, Jim, Ted, Charlie, Bill and Rich were a huge part of his life up until he passed away.

Dad briefly moved to Indianapolis, joining some of his other brothers who made the migration to Indiana. Here he took up night school at Arsenal Tech High School. A huge testament to his love of learning and bettering himself, he graduated valedictorian of his class. Eventually he made his way out to California where he settled for over 20 years.

Shortly after coming to California, Dad became extremely ill with hepatitis and was hospitalized. His illness was serious. Many of you have this story because he told it as his experience, or how he became introduced to Buddhism.

After leaving the hospital, he was met on the street by some people spreading the word about Buddhism. They took him to his first meeting and he learned about chanting. He was hooked. From that point on, religion was a huge part of his life. He attended meetings at least weekly. And while in California he often hosted meetings at his home. Throughout his time in California, he held various positions including District Leader and Chapter Chief.

When he lived in California, one of his first jobs was at a gas station. Some of you might have noticed the picture here today with him a smiling dad at the gas pump. There’s a great story behind that photo. One day, a photography student at a local college came to the station and explained to Dad that he’d been given an assignment. He’d been asked to find someone that was always happy at their work. He said that he immediately thought of our dad, who always pumped gas with a spring in his step and a smile on his face.

He never lost that spring in his step. He was by far the most positive person any of us have ever met, and was quick to smile and laugh. He was happy, no matter where he was.

The photo taken by a photography student in California.

He met his first wife in California and became a father, to Cass, the oldest of his five children. A few years later, his second daughter, Frances, was born. More than anything, Dad loved being a dad. He was always so proud of all of us. He told everyone he met about our every little accomplishment. But, all of you know that, because you’ve undoubtedly heard updates and news about all of us. His love for all of us was so evident to anyone he met, and was definitely known to each of us.

Dad married his second wife and another child was on the way shortly after, this time a boy, they named Ben. Not even two years later and Patrick was born. Eight years after that and Johnny was born.

Norman with his children, daughter-in-law and two of his four grandchildren.

Eventually, Dad moved the three youngest back to Indianapolis, leaving his beloved California. He always talked about going back, and sold the state on all of us at one point. He’d turn to one of us and say, “If I were a young man, I’d head back to California. It’s the place to be.” Dad will return to California one last time. We’ll gather to release his ashes over the state he loved so much later this year.

When he moved back, Dad soon found himself as a single father with three boys, the youngest still in diapers. He worked full time and raised them. Luckily for all of us, he soon got help though. He began dating the woman he said “he wouldn’t trade for any other,” Michiko. She stepped up to help raise the boys. They were together for 19 years, up until he passed away.

Norman and Michiko, December, 2011, St. Petersburg, Florida

Ever the romantic, when Dad noticed a beautiful sunset, he’d call Michiko to tell her about it. She was truly the love of his life.

The stories and memories of our father come flooding back to us, but some of them stick out. Some of Cass’ earliest memories of dad including helping him bottle and label the merchandise at the business he owned, South Bay Polish, a car wash and detail supply company. Dad took us with him everywhere.

While he was at South Bay, he had a van that he used for work. The van didn’t have any seats in the back so he could easily load his product. When Dad wanted to drive the family around in the van, he simply set up folding chairs in the back, skipping seat belts and all and off we went.

Dad loved to travel, and loved taking us with him. Camping was a usual activity. At one point dad owned a tiny compact car, or Le Car. The car barely fit two people comfortably, but dad would pile five or more people and take us on trips around California. And we always took the scenic route. He loved to take his time and point out things along the way.

For Dad, everything was always an adventure; rather he was taking us on a surprise trip, or just going on a drive around the neighborhood. He was also so excited and happy.

All through his life, his brothers remained a huge part of his life. The stories from their escapades are endless, and they became old men together, laughing together in Rich’s alley, Charlie’s backyard, or around a bonfire at Dad’s house.

Norman (2nd from left) with his brothers.

Dad loved people. He had a motto, “everyone’s always welcome.” People were constantly over at his home. After he held meetings, people would stay late into the evening. Dad was always there to offer help and advice to whomever needed it. People looked up to him, and for good reason. Dad never judged. He invited anyone and everyone into his home, no matter their station in life or background. He was a great person to seek for advice too. He was so smart.

Parties were a constant in his life. Bonfires in the backyard were a tradition. Everyone was his friend, and they were all made to feel welcome. When Cass was young, ten or eleven, she’d tell her dad she wanted to throw a party, he’d tell her to get on the phone and start inviting people and soon the house would be full.

He always gave and never said no when someone needed something. He expected nothing in return. He gave because he wanted to help. That’s how much he cared about people, rather he’d known you since he was a young man growing up in Saginaw or had just met you a few moments before.

All of our friends were welcome too, and we often gathered at dad’s house.

In our family, we have something called “Dad-isms.” Dad-isms are words and phrases unique to our dad that he said often. He was known for his quotes, some his own and some he’d read and remembered.

Some of the Dad-isms we remember most include: “You can’t change other people. You always have to look within yourself. You have the power to change yourself, but no one else.”

He’d tell you, “You’ll be thanking me on the reorders” if he knew you’d want seconds or would like something he suggested.

He’d often answer us when we told him about a new idea or experience, to “Go Strong” and to “Take Charge.”

When the time came to leave somewhere, he’d say, “Let’s blow this pop stand.”

Other words of advice include, “The truth is what is. Not what should be. What should be is a dirty rotten lie.” And “The one ingredient one needs to obtain his or her enlightenment is a seeking mind.”

He liked to debate, and one of his arguments that sticks out is: “I believe in the law and cause and effect. You don’t have to believe in it, but it’s a law. Like gravity, you don’t have to believe in gravity, but if you go jump off the top of that building, I guarantee you, gravity will work.”

Friday night was pizza night when Dad lived in California. He’d buy a frozen Celeste’s or Gino’s Pizza for us to enjoy, after the Friday night Buddism meeting. Problem was, those meetings could run for hours after the scheduled time, so we’d be starving while we waited for the last members to trickle out.

The phone pass around is something else we all remember. Dad would answer the phone, talk for a little while and then pass it off to us saying, “Here talk to so and so from some distant state.” Didn’t matter if we’d never met them, or for that matter if he’d only known them for two days. Sometimes he’d pass the phone to everyone present in the house, even if he’d just met them.

When dad made a friend, he remained friends with them for life. Every year, he flew to Las Vegas for what he and his buddies called “The Chum Fest,”where he met friends he’d been friends with in California.

Whenever we asked for something within reason, dad always got it for us. If you really wanted something, he made it happen. When Cass and Frances were little, dad had a strict no animals in the house policy.

Imagine their surprise when rescued pets started to show up at the house when they visited their dad in Indiana. Dad caved to Patrick and Johnny, the perpetual animal lovers.

Another of dad’s loves was pictures. He loved to take them whenever people gathered, which was of course often. He’d get excited and say, “Take our picture,” or “Let’s take a picture” and get everyone to come together. If we didn’t have a camera on a trip, he’d explain “Let’s get a couple of throw aways (disposable cameras) and pull off the the nearest Walgreens or CVS. When the time came to narrow down pictures, we pulled out thousands. He loved showing them off too. He’d pull them out when people came over.

Frances remembers dad as always the best of salesmen. He once went for a job interview. And at the end of the interview instead of asking when they’d follow up, he looked into the interviewers eyes and said, “Okay, I’ll let you know if I want it or not,” and walked out.

When he moved back to Indianapolis, dad worked delivering pizza at different pizza places. He wasn’t afraid to stand up for the injustices in the world and sometimes when a customer didn’t tip him, he’d turn around and knock on the door to ask why he wasn’t tipped.

Another of his loves was playing games. Hardly a night went past without a game of Dominoes, Poker, backgammon or another game going on.

Dad didn’t believe in traditional medicine. When asked to name his primary care doctor, he wrote down the name of his chiropractor who he went to at least monthly. He was a vegetarian. For a while he was vegan, and refused to miss out on any of his favorites. He’d walk his own soy-blend cheese to Pizza Hut and convince them to make him a pizza using his special blend of cheese. He believed in homeopathic remedies. He was also a fan of reflexology and remedies like taping garlic to the bottom of our feet to cure our colds. Dad liked to pick ginko straight from the tree but didn’t like to share the secret location of trees he and Michiko scouted out somewhere in Indianapolis.

Three brothers preceded Dad in death. He lost his brother Charlie four or five years ago, and within the past 18 months, Ted and Rich also passed away. He missed and remembered them, planting trees in the back yard for each of them.

Dad lived a happy life until his last day. Many of his neighborhood friends told us about seeing him on his evening walk around the block just the night before he passed away. He was joking and laughing with his sons the night before he went to sleep only to never wake up again.

Dad lived a life with an inquisitive mind, a large heart and a belly full of laughter. He lived a life well lived. Because we share his jokes, remember the debates we had with him and think about all the wonderful things he did for us, dad lives on in all of us.

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

No Day Is a Normal Day

noreply@blogger.com (Kristine Brite McCormick) — Sat, 11 Aug 2012 16:41:00 +0000

It was just like any other day. So routine and normal for us.

I woke up and immediately opened my lap top to get to work. I often work from when I wake up until I go to bed so it was starting out to be just like almost every other day out of the year.

At some point, my husband left to get some work done too. It was such a routine day, I don't even remember him leaving.

I do remember him coming back at about 3 p.m. with arms full of a few groceries. I helped him put everything away. He popped something in the microwave for a late lunch, and I curled back up on the couch with my lap top.

He sat his lunch down on the end table when the phone rang.

The phone call lasted probably seconds, and from Ben's reaction, I could tell something was horribly wrong.

I started my normal wife badgering, "Who is it?" "What's the matter," I asked.

He had already sprung up from the couch and was already half way out the door, abandoning his lunch on the table.

"It's Johnny," he said. I immediately knew something was wrong with his dad. John (or Johnny as we call him) is Ben's little brother who lived with Ben's dad.

"He says my dad is dead," he said. I was already up and running after him. I shouted, "Wait, I'm right behind you. I'm coming." Somehow I managed to slip on flip flops and grab my purse. Ben was already half way out the back door to unlock the back gate.

My knees felt like jello. Surely Johnny must be wrong, I thought. It's a mistake. He'll be revived.

I literally fell out the door. I fell on my head. My husband didn't see because he was already at the back gate.

I started to see stars, but knew I couldn't slow up my husband, so somehow I got back up quickly and got to the car before my husband even knew what was wrong.

We raced out of the driveway and arrived almost right after the paramedics.

As we neared, I unbuckled my seat belt and grabbed the door handle prepared to leap out of the van. We rolled to a stop, and we bolted from the car. Our entire world caved in. The paramedics had immediately determined that Ben's dad had been deceased for at least a few hours.

He went to bed the night before and never woke up again.

I'll stop with the details of this normal day turned horrific because the rest of it isn't my story to tell. It's Ben's family's story.

Ben's dad was his dad, his mother, his best friend and so much more that words and titles can't even start to explain.

It was a normal day, except my husband lost his daddy.

It was a day like any other, only our family lost an important piece.

I've had so many of these normal nights and days turned into life-changing moments. When Cora died suddenly. When I got the phone call that my grandmother was taking her last breaths. Even going way back to when I was pulled out of school by my aunt and driven to my grandfather's house to be lead to a couch and where I got the news that my dad died.

I'm learning to treat no day like normal. I'm learning how much meaning and importance every single day has. I thank Cora, my grandmother, Ben's dad and my father for teaching me the beauty of seeing each day as not something to get through, but something to treasure and live in.

From now on, there is no normal day for me, because you just never know.

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

Things Not To Write Under Tragic Status Updates

noreply@blogger.com (Kristine Brite McCormick) — Wed, 08 Aug 2012 19:06:00 +0000

I don't know how many times I can write about this. But, apparently it needs to be said, again. Perhaps over and over and over and over. Until it stops.

When a child dies, at whatever the age or whatever the cause, do not take that as an opportunity to further your cause. Maybe your cause is related to their death. I know there are some passionate advocates chomping at their bits for "family stories" that support their viewpoint. However, if that family doesn't explicitly give you permission (and please don't ask for it days or weeks from the death), don't use the death to further your cause.

I deleted a comment on my page under a status update today about a loved baby passing away. The comment completely veered off topic to talk about circumcision. The commentator wasn't even connecting the circumcision to the death, but basically making an argument that hospitals are evil for circumcising babies and not giving other babies the care they deserve. Maybe they are. Maybe they aren't. But, seriously? Stuff it.

Yep, a child died, perfect time to promote my unrelated cause under status updates the family will probably read, said unfortunately lots of people lots of times.

While we're at it and I'm ranting, let's talk about the things you talk about under the post about a sensitive status update, like relating to a child that passed away. I can't tell you how many times people have shared Cora's story and I've clicked over to the share to find all sorts of just inconsiderate or weird stuff posted. Assume that the family could read. When it comes to dead children, just stay away with anything besides love, support and true compassion.

Back off.

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

BlogHer12: Smiles, Cute Babies and Saving Lives

noreply@blogger.com (Kristine Brite McCormick) — Tue, 07 Aug 2012 19:08:00 +0000

I was able to get lots of sleep last night and after I wrote the post about all the swirling emotions during BlogHer, I was really able to close that chapter and move on.

As promised, now I'm going to talk to you about the amazing parts of BlogHer.

I was part of the social media for social good panel by Bloganthropy on Friday. I finally got to meet some friends in person that really helped me after Cora died including Devan and Aurelia. I also met some amazing woman that were nominated for the Bloganthropy award.

Half way through the awards, Debbie, Bloganthropy founder, totally surprised me by awarding me the first every achievement work for my work after Cora died with social media for social good. And, yes, she made me cry, but in a good way!

Debbie Bookstaber, Lisa Lightner, Emily Vanek, Devan McGuiness and me

I nominated Devan for the award because she knocks my socks off. She's constantly advocating for baby loss moms, and she's amazing.

So when it was announced she won, I think I smiled so big it almost broke my cheeks! Seeing her recognized was definitely one of my favorite blogging moments of all time!

Saturday, I held a small event for bloggers that are trying to conceive, pregnant or have babies to talk about newborn screening. I was awarded a Challenge Award from Baby's First Test for blogger outreach, and the Blogger Baby Shower was a culmination of that award.

It went so spectacular! All these woman took time out of their busy BlogHer schedules to talk about newborn screening...wow, right!?

I was even able to show many of them just how easy pulse oximetry screening is by putting a monitor on my pulse ox model Rebecca, my friend Emily's daughter.

Rebecca showing how easy pulse ox screening is. Thanks to Masimo for proving probes and a machine to show moms that it is simple and doesn't bother baby.

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

BlogHer12: An Emotional Recap

noreply@blogger.com (Kristine Brite McCormick) — Tue, 07 Aug 2012 01:53:00 +0000

I almost didn't write this post. I still might not publish it.

I sat down to write a post about the amazing places and invitations I've gotten because of my work for Cora. How humbling it is. How it feels to get an email in your inbox inviting you to speak at the 6th World Congress on Pediatric Cardiology and Cardiac Surgery in South Africa (Yes! That happened this week!).

Ever since Cora died, I've not held back on this blog. I've written honestly and painfully at times about how I felt. I haven't hidden the ugly times.

This weekend was one of those times. I probably should keep it all in, but I've been bawling most of the night.

I went to a little blogging conference you all may have heard about, BlogHer. By little, I mean huge. It's the event in the women blogging world.

I have been to larger conferences. I've spoken at conferences that were triple the size.

Before I talk about how I feel, I have to stop to say some amazing things happened at this conference, and I'm saving them for another post. They were that great. I was able to see my friend win an award for her use of social media for social good. I talked to lots of woman at an event that went AWESOME about newborn screening. I don't want to make it seem like those things were bad. I don't want them mixed up in the ugly I'm about to unload on this post.

We left a day late because of a huge financial fiasco that popped up last minute with deposits that we didn't know about, and fees that we were told were paid that were suddenly due. We basically found out about one huge chunk of change hours late at night, hours before we were supposed to leave.

I missed an entire day of plans and events.

On our way over, we locked our keys in the rental car somewhere in the middle of Ohio.

Believe me, I know about keeping things in perspective. Since Cora died, I genuinely don't get as upset about this sort of thing, but combined with stress over having responsibilities during the conference and anxiety about meeting people for the first time, I was a basket case.

We stayed that night with my sister, which was totally and completely awesome. Besides the whole fifth floor walk up apartment thing. I had to take a break half way up. New York never fails to remind me that I'm super out of shape.

The next morning, I decided to sleep in a bit since we got in so much later than planned. I set off with directions from HopStop to lead me to the Hilton. Only I walked the wrong way, hopped on the wrong train and had to transfer a bunch of times after sitting on a non-moving train for at least 30 minutes.

Again, I'm completely whining about stuff that isn't a big deal, but I need to get it off of my chest and behind me.

At the conference, I felt like I was spinning my wheels.

I know that I'll get at least "the conference is what you make of it" comment. And, believe me, I tried to have a positive attitude, but it was all too much for me.

I thought a lot about how I felt and recognized a lot of feelings that I haven't had since I was in high school, feeling perpetually out of the loop and out of place. I'm not saying that the conference is like high school or that anyone was directly rude to me, I'm just being honest about how I felt.

It spurred a lot of anxieties and self doubts.

Something was just really off with me. I'm still having trouble articulating it.

I loved seeing all of the blogger babies, but couldn't help thinking about my little girl.

Most of all, I spent a lot of time thinking about how I wasn't supposed to be there at all. I was supposed to be home with my 2.5 year old. I wasn't much of a blogger before Cora died, and I have a feeling I wouldn't have been much of one had she lived. I feel like I'm living someone else's life. I feel like the life I should be living with Cora isn't a dream. I feel like it's truly what was supposed to happen. I can see it.

Life throws curve balls. I understand that. However, children are not supposed to die. When Cora died, it wasn't a bump on the road. It created a new road. Somewhere, even if just in my mind, that other road still exists.

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

Dear Cora: The Top Four Biggest Days of My Life

noreply@blogger.com (Kristine Brite McCormick) — Sun, 29 Jul 2012 00:27:00 +0000

Dear Cora:

Sometimes I think about the stories I would have told you. I remember my mom telling me the same stories over and over. I liked hearing them. I liked listening to who she was before I was born.

This is my place to tell you those stories.

For some reason last night, I started to think about the most "epic" moments or events in my life. The top five experiences. These experiences are really beyond words. The times in your life that you never forget.

Here are mine:

1. The day you were born and the five days we had with you. By far the most monumental days of my life.

2. Our wedding day. It was a small, quick affair, but we became one.

3. The 2009 Presidential Inauguration. It truly was one of the biggest moments in history, and we were witness.

4. The night we saw Paul McCartney live at Wrigley Field. Huge Beatles Fan here. It was amazing.

I'm glad I got to tell you about them, even if just on my blog.

Love,

Mom

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

Giveaway! "The Mother of All Pregnancy Books" by Ann Douglas

noreply@blogger.com (Kristine Brite McCormick) — Fri, 27 Jul 2012 01:40:00 +0000

Last Fall, I wrote to my friend Ann Douglas. She's a renown author and loss mama herself. I asked her to include pulse oximetry screening in her pregnancy book, "The Mother of All Pregnancy Books." Turns out she was working on a new edition, so it was perfect timing.

I gave her the evidence backing screening every baby for heart defects with pulse oximetry and she ran with it, even linking to this site in her book.

I want every expecting to read that book. It's a great read. I can't give away copies to every pregnant woman, but I can give away one.

I'm paying for the copy. It's not being provided by Ann, her publisher or anyone else. In fact, I didn't even tell her I was doing it.

Enter for you, a pregnant friend or family member or someone else. Good luck!

Please help me spread the word about this giveaway. I never do them on this blog, so could use your help.

Open to the U.S. only (sorry, paying for shipping myself) and the giveaway will close on Wednesday, the day I leave for BlogHer!

If you want to buy Ann's book, it's available on Amazon and many other retailers.

To enter, fill out the rafflecopter. Winner will be chosen at random.

a Rafflecopter giveaway

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

Baby's First Test Blogger Baby Shower for a Cause

noreply@blogger.com (Kristine Brite McCormick) — Mon, 23 Jul 2012 18:02:00 +0000

My favorite thing about blogging is the infinite power to do good, to help, and of course to make a difference. Next week, I'll be traveling to New York for a huge blogger conference. I'm so excited this year to be able to reach out to fellow bloggers, specifically those that are pregnant, have babies or are trying to conceive to talk to them about the importance of newborn screening.

Cora's Story won one of the Challenge Awards from Baby's First Test to promote newborn screening awareness among digital moms. Five bloggers have posted about newborn screening, and the program wraps up at BlogHer.

It's going to be an awesome event, with prizes and gifts from the following organizations:

Comments are closed on this blog. I would love to hear from you though, don't hesitate to reach out on the Cora's Story Facebook page.

Parent Blaming and the Colorado Theater Shootings: Grieving Parents Deserve Support

noreply@blogger.com (Kristine Brite McCormick) — Fri, 20 Jul 2012 21:37:00 +0000

This morning, more than a dozen people lost their lives and several dozens are injured after a shooting at a movie theater in Aurora, Colorado.

My thoughts are with their victims and their loved ones. I'm sending healing vibes to everyone involved. It's a horrific tragedy that makes no sense.

It seems in an effort to make sense of it, some people are choosing to take this as an opportunity to judge the parenting skills of some of the people in that movie theater. I don't know many of the details about the status of victims because I've had to turn away. It's just too awful.

I have read however, that a three month old and a six year old were in the theater for the midnight showing. I know this because I've seen statuses, tweets and comments about the parenting choices of their parents.

People died, and we're worried about how other people parent their kids?

Remember, people have different beliefs and morals than you. As long as they aren't abusing their kids, who are we to judge?

Why is that whenever a child dies, we immediately blame the parents? Whenever a child is hurt, it is the parent's fault. Accidents happen. This wasn't an accident, it was a vicious mass murder. None of the parents walking in would have anticipated that. It could have happened at the 11 a.m. mommy and me viewing of a cartoon. It could have happened anytime. Why can't we instead show love and compassion? Why do we waste energy shaming them and talking hatefully?

Just because you wouldn't do something with your children, doesn't make something abusive or wrong. Sure, lots of parents would never let a six year old see a movie that's known to be dark. However, some parents would.

We don't know the circumstances. It's actually no one's business.

I have a personal theory about blaming parents, moms in particular. Whenever a woman miscarriages, undoubtedly some people will wonder what drugs she took or what activities she participated in, thinking that she caused the death. However, science tells us that it almost always is not the mother's fault. Whenever a baby dies, society as a whole seems think it's murder or abuse by the parents. A child's accidental death? Let's examine every parenting choice made in the family since the baby was conceived. What does that accomplish? What if it was an accident? A "bad" parenting choice made by loving parents?

Why the parent blaming?

Because it alienates the horrific event. Your child won't get hurt or die, because you're a "good" parent.

Children die.

Even children with loving, non-abusive parents.

I weep inside today for all the parents that will bury children, and all the children burying parents over the next few weeks in Colorado.

It's not a day to judge; it's a day to mourn.

Update: After I posted, I read a post by my friend Maya about another aspect of parent blaming and this horrible tragedy. I wanted to share.

The Toughest Grief Critic

noreply@blogger.com (Kristine Brite McCormick) — Fri, 20 Jul 2012 01:39:00 +0000

Over the past 2.5 years, I've talked a lot about the pressures and expectations that society puts on mourners. I've read a lot about awful things people have said to and about people that are grieving the loss of a child.

Nothing I've heard has been as unfounded or out of line as the stuff I hear every day from myself.

I am truly my toughest grief critic.

Sometimes I still search for the old Kristine. I couldn't have really changed so dramatically all in an instant, could have I? I convince myself that I'll be back to normal and work toward it. Somewhere along the line, the realization strikes me over and over, no I will never be the same. My daughter died. In my arms. Unexpectedly. In that moment, I was reborn.

Lately, I've been thinking to myself that it's been 2.5 years, I should be doing "better." I should be I don't even know.

No one has said anything to me along those lines, but I imagine people thinking it. I hold back what I'm really saying for fear of grief judgment.

I know better. I do.

My mind plays tricks on me, and I say things much worse than anyone has ever said to me.

How Could Someone Online Bully a Grieving Mom?

noreply@blogger.com (Kristine Brite McCormick) — Wed, 18 Jul 2012 20:33:00 +0000

"You have enemies? Good. That means you've stood up for something, sometime in your life." Winston Churchill

People are shocked when I say that I've dealt with online harassment and bullying. They can't believe someone would do that to a grieving mom.

It does happen. And not just to me. I've seen my grieving mom friends bullied for all sorts of ridiculous reasons. I've seen their children called names. I've seen their future children cursed in words I won't repeat.

So why do I stay around? Why do any of us stay around? Because for every negative interaction there are 100 good ones. For everyone that curses my name, 1000 people say Cora's name and spread her story with the same love they'd use to describe their very own children.

I'm not going to lie. There are days it's brought me down to my knees and made me want to crawl in a hole and never post on social media again. Quite a few times. Once I even deleted many of my pages. I've cried. I've gritted my teeth in anger. I've felt gnawing in the pit of my stomach.

If you're a new blogger, especially a new loss blogger, know it gets better. It gets easier to handle. The more you stand up and fearlessly try to work for others, the more others will try to cut you down.

People hate me. They do. There are a handful that for whatever reason, didn't agree with something I've said or written over the years. At one point in my life, I would have done anything and everything to make sure everyone liked me. However, now I'm finding these people, the people with such hate in their heart for me, they are not good people. I'm fully comfortable asking you to stop and consider if you read something about me, look at the source.

“I ask you to judge me by the enemies I have made.” ― Franklin D. Roosevelt

Find what drives you and put your blinders on. Find people you can trust to talk things over with when things get rough. Ask the advice of others, as I did on my Facebook page.

At the end of the day, I take comfort knowing that I'm writing and blogging for good. I'm solaced by the fact that I speak the truth. Sometimes the truth will piss people off, but at least I've said the truth. I cannot control the lies others say. And if other people believe them without asking me, I cannot control that either.

No matter the situation, someone will always be rude, cruel and untruthful. All I can do is make a pact that I will never let that happen in my communities, Cora's Facebook page, my Twitter and any other group I'm a part of.

Caged

noreply@blogger.com (Kristine Brite McCormick) — Tue, 17 Jul 2012 19:03:00 +0000

When I worked in newspaper, I'd make dozens of phone calls on a daily basis to anyone from a local family with a wedding announcement to officials at the State House. It never bothered me to pick up the phone, and I always felt confident in speaking to whomever was on the other end.

At certain times in my life, my home was little more than a place I went to crash, change and get up and go out again. I wasn't fearful to get out. I spent more time away then home and would go anywhere, at anytime.

After Cora died, the phone became scary. I don't know why. I have regrets about not talking or seeing my grandmother as much the past two years. Before that, I'd call or her or go see her when I could fairly regularly. I had her phone number memorized.

I could be so much more productive and further Cora's story so much if only I didn't have my new phobias. I put off the phone as much as possible.

I think people sometimes get the wrong idea, they see my on my monthly out-of-state trips and must think getting out of the house is no problem.

Truth is, I haven't been to a friend's home in longer than I can even recall. I've canceled more appointments and plans then I could ever admit. When I go on those out-of-state trips, I do the bare minimum and crash in my hotel room. I'm full of anxiety the entire time. More than one trip has been largely spent on the phone with my husband near tears.

I'm caged in many ways. Not in an alarming way. In a way I think I'll grow out of, especially when I have more children.

After Cora died, the world made little sense. The more activity swirling around, the more confused and anxious I become.

I'm writing today to sort it out and break a cycle.

I miss a friend so I make plans. In the hours leading up to the plans, I become overcome with flash backs, anxiety and worry. I break the plans. I feel awful about breaking the plans and worry my friend will never forgive me.

I'm not a shut-in by any means, but I have changed so much.

If I've cancelled on you, I hope you know that it wasn't about you in the slightest.

I don't know if this is "normal." I don't know if I should worry. I don't know if it's healthy. I don't know if it's a coping mechanism. I'm guessing and I feel like it's my mind's way of self protecting for now. Even two and a half years later, I'm quite fragile.

I Miss the Rain

noreply@blogger.com (Kristine Brite McCormick) — Mon, 16 Jul 2012 23:46:00 +0000

For nearly two months now, it hasn't really rained.

I didn't realize how much I missed it. Sitting inside and watching the rain hit the window, washing away the day's dust and creating new life as plants and grass grow and flourish. Without the rain, everything is dead and brown, and the entire town seems to be covered in a layer of dust.

I need the rain. As it washes away the dust and creates life outside, it lets me break down inside. It's okay to be curled up on the couch, washing away your thoughts when it rains outside.

I miss the rain. I so like curling up hearing it hit the window panes. I love thunder and lightening. They remind me that I'm alive.

Nature is so much of whom I am in on the inside. My moods revolve around the seasons, and I live to wake up in the morning to a fresh layer of snow. I love the first warm day after winter, when I can go outside without a jacket.

No matter what is going on internally, the seasons keep coming. Except when the rain doesn't come, and everything inside gets stuck.

It's time to pour.

It seems the entire city is waiting with bated breath for the next rainfall. Everything is on pause.

It's okay to like the rain.

It's okay to be sad. It's easier to be sad in the rain. And after the rain, eventually sunshine always comes back. However, to enjoy the sunshine, I need the rain first.

Photo from Flickr Creative Commons

Grief Stage: Denial

noreply@blogger.com (Kristine Brite McCormick) — Sat, 14 Jul 2012 01:32:00 +0000

I'm not a huge fan of the Kubler-Ross model of grief, the grief cycle. After all, it was made to describe the process patients go through when they die, not how their survivors feel.

Society so wants us to have a way to deal with death. We like to think that if we deal with each step, we'll be okay. If someone is acting outside of our expectations, we can say they're "stuck" on one feeling or stage. I see why this particular model became so popular.

However, I do think that some of the feelings or stages are relevant, some of the time. I'm a firm believer that we all do this grief stuff a little differently.

With Cora's death, I never really went through denial, one of Kubler-Ross' stages. Sure, I still can't believe that it happened, and don't understand how it's even possible that children can die, but I never could deny that she wasn't here or that my life wasn't completely different. After all, she died in my arms. Hard to deny that.

My grandmother died just about a month ago. I'm in total complete denial. It's just too hard to think about. When I think about it, I just stop and start pretending I'll see her again. I get the denial phase now. Honestly, I'm in no rush to move out of it.

I know that I'll slowly have to come to grips with the fact that she's truly gone, but I just can't do it all at once. I can't believe that I'll truly never hear her sing happy birthday to me or laugh at her silly jokes. It's easier to think that I will.

Denial has such a negative connotation. We are coached to come back to reality with things, but I'm starting to think that sometimes denial isn't so bad. I think I'll stay here for a little bit. I never got to with Cora's death, I was thrown right into deep, deep depression and sadness.

Until I see you again, Grandma.

Grandma with my little sister and I.

The Picture That Helped Save Thousands of Babies: How I Found Out About The Simple Test That Could Have Saved My Daughter's Life

noreply@blogger.com (Kristine Brite McCormick) — Wed, 11 Jul 2012 01:03:00 +0000

Late on a cold Minnesota December night in 2009, Annamarie Saarinen stumbled across a blog post asking for readers to wear pink in honor of a little girl named Cora. She snatched her baby out of the crib and took this.

She'd stumbled across the blog post in a search to connect with other families with congenital heart disease. Annamarie's daughter had been born with a heart defect just over six months prior. After enduring cross country medical flights and surgery, Annamarie transformed her experience with her daughter into a better future for other babies. Her daughter's condition wasn't diagnosed before birth. Much like Cora's death threw my family into the world of congenital heart disease, so was the Saarinen family. Annamarie read about a screening method for newborn heart defects in a New York Times article, and decided to do something about it.

She helped start and coordinate a pilot program for pulse oximetry screening of newborns at University of Minnesota Amplatz Children's Hospital. The pilot program was just getting under way when she stumbled across Cora's story and took that photo.

The photo means so much to me as Cora's mother to know Cora was loved and remembered. What meant almost as much to me was the comment that Annamarie left with the photo. It was the first time I'd ever heard that there was a screening that might have saved Cora's life. Better yet, that there were people out there working to save other babies Cora's fate. I had a mission. My life without Cora had meaning.

I stumbled around in the dark for many months, and Annamarie would keep me updated, helping me, sharing Cora's story in her advocacy work. Letting Cora be a part of this.

Annamarie took screening national when she helped get the condition nominated for review by the group that adds new newborn screenings to the federally recommended panel. She took Cora with her and shared her story.

After nearly a year, many phone calls, letters, meetings and lots of pounding the pavement, screening for congenital heart disease was added, setting up the addition to state panels.

I finally got to think Annamarie in person when I met her last Winter, however, I realized that I've never shared the story of how one picture snapped late at night saved a bunch of babies, and connected two families forever.

Calls to Sterilize Parents of Children Locked in Hot Car Are Wrong and Misplaced

noreply@blogger.com (Kristine Brite McCormick) — Sun, 08 Jul 2012 01:01:00 +0000

A three year old little girl remembers her parents had some candy in the console of the car so she goes looking for it. She fills her belly and falls asleep. She never wakes up. She's dead when her parents find her after a frantic search. They called her super princess.

Should her parents be locked up for life with murderers and rapists?

A man returns from an overseas trip and goes straight to his home where he picks up his little boy and girl. He's jet lagged and tired. He drops the little boy off at day care, but he usually doesn't take the little girl with him. He goes into the office and a few hours later gets a call from his wife. She tried to pick the girl up at day care, but she isn't there. He races to the car where he finds his daughter's body. By all accounts, he was a loving father, and no evidence of child abuse or neglect is apparent.

Should he be held down and sterilized?

Two teenagers sweat it out during record breaking heat. They have no air conditioning. They became parents young and try their best, but struggle to make ends meat. They're baby son is so hot he won't sleep no matter what they do. They finally put him in the car and drive around, where he falls asleep. They stop and don't know what to do. No one ever explained to them that hot cars could reach temperatures 30 degrees warmer than the air temperature. They are young and dropped out of high school. They turn to each other and quickly work it out. He needs sleep. After all, they don't have air conditioning in their home, the car with a window cracked can't be any hotter than that. The baby dies.

Should they be locked in a hot car until they die?

Children, animals and in fact all humans should never be locked in a hot car. That's a fact.

When a child dies, it's always a tragedy. When a child dies in a preventable accident, it's a tragic reminder of just how one horrible mistake can ruin an entire family.

The scenarios above are all roughly or closely based on real scenarios. Before I go on, a moment to offer my thoughts and love to the families, friends and communities of these children.

Sometimes neglectful parents leave their children in the car. Sometimes loving parents and caregivers make a horrible, horrible mistake. Yes, some of them might even be uneducated or not the brightest. Some of them might work too much. Others might make the mistake of not locking their car so a child can't climb in.

Today in Indiana two children were left in hot cars. I don't know the circumstances.

I posted about it on my Facebook page, and was completely shocked by the comments calling for the parents' heads.

The comments after the scenarios are based on real comments on my status, some of which I deleted.

How quick to judge.

Did you know when Cora died there were rumors I feel asleep and crushed her? People were talking about ME like the parents above. They probably called me stupid. They probably wondered why I wasn't arrested.

They didn't know that I was investigated, questioned, and that I was wide awake, attentive and alert when Cora died.

Instead of spewing hate at the parents, whom may or may not be be neglectful, let's focus on helping other babies.

It's easy to say it would never happen to you. Mistakes happen. This Washington Post article tells a story about just how this awful mistake could happen to almost anyone. What about the parent who does fall asleep and rolls over on her baby? What about the parent who let's her children play outside in the rain and one is washed away in a freak accident?

From the Washington Post article:

"What kind of person forgets a baby?The wealthy do, it turns out. And the poor, and the middle class. Parents of all ages and ethnicities do it. Mothers are just as likely to do it as fathers. It happens to the chronically absent-minded and to the fanatically organized, to the college-educated and to the marginally literate. In the last 10 years, it has happened to a dentist. A postal clerk. A social worker. A police officer. An accountant. A soldier. A paralegal. An electrician. A Protestant clergyman. A rabbinical student. A nurse. A construction worker. An assistant principal. It happened to a mental health counselor, a college professor and a pizza chef. It happened to a pediatrician. It happened to a rocket scientist."

These incidences need to be investigated completely and with all possible man power. However, wasting time spewing hate on the Internet after reading about a tragic, horrific death (should it be accident, neglect or purposeful manslaughter) won't do anything to make it stop happening.

For real action, take a moment not to blame the parents but to help other parents.

Share the Ava's Rule postcard so that every parent knows to set up some sort of system to check the back seat, to lock their doors and that hot cars are deadly.

I just cannot shake the sterilization comment from my Facebook. And I bet people were saying it about me, before they knew. Cora's death wasn't an accident, but it looked like one at first.

You just never know.

I hope if you're sharing the links about the children that were left in cars today that you'll also share Ava's postcard.

Advertise

noreply@blogger.com (Kristine Brite McCormick) — Sat, 07 Jul 2012 04:18:00 +0000

Support Cora's Story and promote your blog/site/product. It's a win-win-win. It's a win for everyone because I only approve ads that I love and think my readers would like as well.

Cora's Story has a large social media following (13,000 Facebook fans and 7,000 Twitter followers) and if you purchase a large ad, you'll get one Facebook mention as well.

Each month we donate 20 percent of advertising fees to a heart-related charity. If you'd like to nominate a charity, please contact me at kbrite@gmail.com.

What to Do When Your Child Dies?

noreply@blogger.com (Kristine Brite McCormick) — Thu, 05 Jul 2012 16:59:00 +0000

That's an actual search term that lands people on this blog.

"What to Do When Your Child Dies?"

It makes me want to give a huge hug to the anonymous stranger that has turned to Google in hopes of getting some sort of answer about how to go on after her child died.

I imagine her alone and barely able to breath, wondering how she'll possibly be able to go on.

She stumbles on this blog, or another blog, or a website and she doesn't get answers. There are no answers to that question.

I humbly offer some grieving mother thoughts though.

When Your Child Dies...

Don't compare yourself to any other mother--with children alive or dead. Mothers of live children will tell you they don't know how you do it and they'd never be able to. They can only say that from the other side. Grieving moms all react differently, so you'll find you relate sometimes and sometimes you don't.
Or do compare yourself and relate to other moms through being able to say, "oh yes, I feel like that, too."
There's a sisterhood of bereaved mothers for you to join. It exists in the hearts, souls and minds of any bereaved mother. You are welcome here. You are loved. We wish you weren't here, but you will always find love and support.
Don't expect it to "get better" soon. I'm extremely sorry to tell you that your pain will most likely get much worse. But also don't feel bad if you do have moments of feeling better.
Whatever feels right, is right. If you need to cry, then cry. If you need to have a night out with friends to laugh, that's okay, too.

That's all I've got. I wish there were more. I wish there was some sort of to-do list you could check off to get through this.

More than anything whatever you do or don't do, your child made an impact. Your child is loved.

You are loved.

Cora's butterfly by the talented Carly Marie Dudley.

Dear Editors and Authors of What to Expect When You're Expecting

noreply@blogger.com (Kristine Brite McCormick) — Tue, 03 Jul 2012 23:40:00 +0000

Dear Editors of What to Expect When You're Expecting:

I ran out and purchased your book, "What to Expect When You're Expecting," the day I found I was pregnant, along with a bottle of prenatal vitamins. Almost every mom and pregnant woman I talked to told me go buy your book and that I'd be set.

I read each of the monthly updates. I even skipped ahead and read what was going to happen in future months and then re-read them when I reached that point in pregnancy.

Cramming information into your book must not be easy. There's a lot to cover, and in a way that pregnant women will understand and want to read. I imagine you put a lot of thought into your books and what to include and where.

Two and a half years ago, my daughter died as suddenly and unexpectedly as possible. I was nursing her and looked up for a split second, when I looked back down she was pale, limp and not breathing. Despite getting her to the hospital within 5 to 10 minutes--tops, she couldn't be revived.

Two days later, the coroner called with a preliminary autopsy result. She said Cora had something called a congenital heart defect. I hadn't heard of the phrase. It might have been in your book, tucked away somewhere, I'll give you that. Someone said they looked in a pregnancy book, not sure if it was yours, and found one paragraph about CHD and it was called "rare."

Unfortunately, it's not. It affects 1 in 100 babies. It's the most common of all birth defects. I read other pregnancy and baby books besides yours, and spent a lot of time reading online. I also went to all my prenatal appointments. However, I never knew that babies could be born with a heart problem--and that as far as problems go, it's relatively common.

You're the most read pregnancy book. I'm not placing any blame on you, but I think that you could do so much to help save babies.

I have a dream. A dream that no other mother first hears the words "congenital heart disease" from the coroner. I advocate for more and better screening, both prenatally and in the newborn period to reach that goal, but that also means we need to get the word out.

I know that writing about the scary stuff in a pregnancy book meant for a mainstream audience isn't the easiest, but I know you can do it. I'm willing to help. I've got ideas.

Include more information about newborn screening, and newborn heart defect screening. Explain CHD in that section. While it's been added to the federal panel, many states and hospitals are not screening. Urge parents to ask for the screening, which is recommended by the March of Dimes, American Academy of Pediatrics, American Heart Association and many other groups.
The heart develops in early pregnancy, and so do congenital heart problems. Mention CHD when you mention the heart developing.
When you talk about the importance of folic acid, mention CHD--there's a link!
At the 20 week ultrasound, many families find out about their child's broken heart. When you mention it in your book, mention questions moms and dads should ask about the heart to increase detection of heart defects.
I love that you include some information about the first few weeks of life in your book. Why not tell moms to Think HEART and look out for heart problems in their newborn?

I know writing about the hard stuff isn't easy. I know it's not what mamas want to read. I know you've got to write it extremely carefully. I know you can do it. I hope you will do it.

You could help make this grieving mama's dream come true. You could help an entire community of heart families feel validated that their cause, the most common birth defect, is getting the attention it not only deserves, but needs.

Most importantly, you could help save lives.

Sincerely,

Kristine

Mom to Cora

To my readers: My friend Ann Douglas included newborn heart screening in the newest edition of her pregnancy book, "The Mother of All Pregnancy Books," if you'd like to check it out. It's also a wonderful resource for pregnant women, and I'm so proud that Cora's Story is linked to.

I could so use your help spreading the word about this post, and getting the attention of the editors, publisher and marketing team of "What to Expect When You're Expecting." Could you share this post?

When a Joke Isn't Funny

noreply@blogger.com (Kristine Brite McCormick) — Mon, 02 Jul 2012 21:29:00 +0000

Warning to my fellow loss moms, I was triggered by something further down in this post, and you might be too, so read with care.

As a loss mom, I've learned I can't get upset and take things personally too much, or else I'd spend most of my days upset.

The rest of the world goes on. While one in four women have lost a child to miscarriage, stillbirth or infant death, most moms will never know this pain. When I read something that isn't intentionally insensitive, I try not to get upset.

Every once in awhile, I read something that hurts like a dagger through my chest. I know that the people who made this were just trying to be funny. I know that all of the moms sharing this on Facebook were just trying to make a joke, but it made me tear up every time I saw it in my timeline.

It's just really not funny to me, at all. I couldn't stop thinking about it for days after it, and it kept popping up in my news feed.

I don't like being so sensitive. I generally love to joke and giggle.

Some days, I wish I could go back to the carefree days when I wouldn't have had a second thought about this card, but I'm also glad that because of my experience with Cora, I can recognize how wrong this card is.

I am a good mother.

What Grandma Taught Me

noreply@blogger.com (Kristine Brite McCormick) — Thu, 28 Jun 2012 17:15:00 +0000

I knew I wanted to speak at my Grandma's funeral. I just felt so compelled to do so. The night before, I curled up in bed with my little sister and we worked on something together.

I'm still having a lot of trouble putting into words what she meant to me, but want to share what we came up with. We both spoke, me first and then her.

Kristine:

We've lost a lot of people in this family. Way more than our fair share. Some old. Some young. All so loved, just like Grandma.

But, they all live on through us.

Granny lived every day with whimsy and joy. The world was her playground, and we were all her favorite playmates.

There's not a person among us who doesn't have a funny Granny story. I wish we had time to share them all, but we'd be here for the rest of our lives.

Instead of sharing a Granny story, I want to share my vow, my promise, to Granny.

Granny,

I promise to laugh every day.

I promise to joke and smile, even during the hard times. Especially during the hard times.

I promise to step back when I'm angry or frustrated and look at this big game called life and giggle until my cheeks hurt.

I solemnly swear to you Granny that I'll pull ornery pranks at inappropriate times and I'll chuckle my head off doing it.

You've forever changed the way I look at the world, and through all of us, your laughter doesn't die today, it multiplies.

Megan:

Two years ago, I moved to New York. I told Granny my plans, to which she blurted out, "Now why the hell would you want to go and do that for?"

Her reaction was typical Granny playfulness.

When I first moved to New York, I was so homesick and Granny would call to check on me every few days. She always called and checked on us when we were sick, sad or had something going on. If she didn't call us to check, she'd call our parents. In fact, Granny knew what every single one of her grandkids was up to. In turn, everyone in the entire family knew what everyone else was up to. She was so proud of us all.

Every single time, she'd urge me to never, ever give up, even though I was so homesick for her and family. She'd say, "You follow your dreams, you hear me? You hear Grandma? You follow your dreams!"

I think it's the best advice a Grandma can give. I continued to talk to her at least every other week, and she got to hear how happy I was in my new home. I followed my dreams.

For the rest of my life, whenever I have a goal or dream, I'm going to hear Granny's voice, urging me to follow them. If I feel like giving up, I'll just shut my eyes and think about Granny's words, "You follow your dreams, you hear me? You hear Grandma? You follow your dreams!"

Reliving the Worst Days of My Life

noreply@blogger.com (Kristine Brite McCormick) — Wed, 27 Jun 2012 20:02:00 +0000

A few weeks ago I was reading an article that mentioned a place in Africa where African women replay the events surrounding traumatic deaths over and over. They act out the death and their reaction when they found out. I looked and couldn't find the information anywhere, but I was reminded of it this week. The women find it healing.

While thinking and reliving those moments in your head can certainly cause issues like depression and PTSD, I think these African women might be on to something. If you asked me last week, I would have told you surely those women were doing themselves more harm. But then last Tuesday everything changed, again. My Grandma whom I was extremely close to, died.

I'm completely devastated by my grandma's death. Her funeral and viewing were late last week. In the same funeral home I last held my daughter. I went in a few times after Cora's death, but just in the months after to pick up or drop off things relating to her funeral.

In the funeral home, there are two large viewing rooms. Cora was in the smaller of the two, and my Grandma the larger, the same room where my dad was when I was a little girl, one of my best friends in 8th grade, my grandfather when I was pregnant with Cora and countless other loved ones.

I walked in and freaked out. I didn't think I would be like that. I was so determined to stay strong for my mom and little sister, but I lost my mind for a little while. We arrived early before viewing hours and when I started to approach Grandma's casket, I lost it. I ran out of the room and into the basement. I paced the halls and remembered pacing before I gave Cora's eulogy. I stood outside of the door to the room where I made Cora's arrangements. Grandma's grief was fresh there too, I was making new grief memories. I love her so, so, so much.

Somehow I made my way upstairs to the place I last held my daughter. There was a different body there. Someone else loved and missed. I rushed back out.

I soon couldn't breath. I rushed outside where my sister found me. All the sudden I was overcome with anger. If you've ever grieved someone, you're probably familiar with grief anger. It's like you've been poisoned. It's uncontrollable. It welled up and I thought I might hit someone or something. I didn't see how I could possibly last two days at the funeral home. Until I realized I needed to get this poison out. Ben was on his way from Indianapolis, and I barely let him say hello before making him jump back in the car. I directed him to the cemetery where my dad is buried, and I got it all out. I screamed and screamed until I collapsed on the grass. I hit the van car seat until my hand hit. I cursed and yelled and made sure the poison was completely cleared from my system.

After that, I was able to spend the viewing and funeral thinking about my Grandma and when I cried, the tears where for her.

Replaying Cora's funeral had released something. It created some space where anger I didn't know existed bubbled over and was then released. It created space for love and healing.

The next day, Grandma's funeral was extremely tough. When the time for the procession came, we piled in our van with my mom and were towards the front since we had my mom in the car. I didn't pay much attention as the police officer escorted a long line of cars. We drove from the funeral home towards my Grandma's burial place in a small town across the state line in Ohio. We drove downtown, and passed the hospital. A large stretch of the route included our exact route from that night with Cora. The night she died and we rushed her to the hospital.

As we exited town and made our way closer to Ohio, the police officer pulled over to block an intersection. He got out of the car, and I recognized him instantly. It was the same cop that had escorted us on some of that route the night Cora died and then cried with us and waited with us as we hoped for a miracle. He led us through again and helped us give a loved one the best send off possible.

I never thought replaying parts of the worst days of my life would open up such fresh thoughts, feelings and emotions. I'm glad I was able to recognize and process them. I'm mainly full of gratitude that I loved so deeply, even though missing them is so hard.