Cora's Story

Dear Cora: Ten Things You Should Know About Mommy

noreply@blogger.com (Kristine Brite McCormick) — Sat, 26 May 2012 00:39:00 +0000

Dear Cora,

I've written you a few times with ten things I thought you should know about daddy. But, I realized the other day, there was so much I wanted to share with you about me. I wondered if you would pick up any of my quirks and imagined sharing the stuff I loved with you. This is my chance to do that.

Ten random facts about mommy:

1. I hate rice. If you were here, I would tell you that hate is a strong word and should be reserved for only times when you really, really mean it. I mean it. I hate rice.

2. I'm a geek, and I'm proud of it. I'd rather stay in curled up with a good book than go out. I love geeky stuff like Wordpress plugins and finding the perfect hex code for a blog design color.

3. I won the fifth grade spelling bee. See number two.

4. I've always wanted to be a writer. Thanks to you, I finally feel like I'm writing how I want, for me, and the results have been soul soothing.

5. Pickles, basil, tomatoes, mozzarella and mashed potatoes are my favorite foods. Not necessarily all together, but I might try it sometime.

6. I'm messy. Okay, so I'm an absolute nasty slob. Good thing Daddy's neat, so let's just hope you would have picked up his tidiness.

7. I knew what school I wanted to go to and had selected my intended major since I was in about seventh grade (Indiana University, journalism). I graduated with a B.A. in journalism from IU.

8. My favorite classes in college were: History of the Beatles, Yoga and Communications Law.

9. While in later years I wanted to be a newspaper reporter. I found a piece of paper from kindergarten that asked what I wanted to be when I grew up. My answer? Waitress. I served tables through high school and college and worked at a newspaper after college, so my childhood dreams were accomplished.

10. Above all, compassion and empathy are most important to me. They're my guiding values.

Love,
Mom

Put Away the Dead Baby Card

noreply@blogger.com (Kristine Brite McCormick) — Sat, 19 May 2012 01:50:00 +0000

When our babies die, you don't get to use them for your cause. It's wrong and horrible in every sense.

I've seen it happen personally more than once. I'm not going to link to posts or write names. I don't want to acknowledge them. I've seen it by more than one cause. I've seen it from natural childbirth causes, and I've seen it from those that support highly medicalized birth.

They dare to pick up on a snippet of a story about a child that dies spread on the Internet and run with it,claiming to know that the child died because of X, which is of course the opposite of their cause.

I know one blogger, who happens to be a health care provider, who even brags about handing moms "dead baby cards."

A baby's death is not fuel to your fire. A baby's death is not something to be twisted and used. I know what you're all thinking, well, if the baby died from that, it needs to be reported. Here's the evil thing, these people get the facts wrong. They read a few sentences and jump to conclusions and report it as fact.

We get to pick our baby's "cause." That is, if we even want to. Unless of course a mother hurts her baby, then the law gets to sort out justice for the baby.

Pulling the dead baby card is low and despicable. Using a deceased child for a cause that the parents don't believe in is just wrong.

I don't care if you're anti-homebirth, anti-circumcision or believe that baby's should be born in rocket ships, it's low.

You don't know the facts. You don't know what happened. You haven't researched the story. You haven't interviewed the health care providers, parents and others. Quit playing armchair detective.

Put away your dead baby card. You're just as bad as a so called "shock jock." But worse, because you're getting page views on the backs of my friends' dead babies. Stop.

30 Months

noreply@blogger.com (Kristine Brite McCormick) — Wed, 09 May 2012 03:07:00 +0000

Here's the thing about your baby dying suddenly. All it takes is one triggering article. One horrible flashback and bam you're in a tailspin.

A few weeks ago (I think it was a few weeks ago, it might have only been days), I read an article that talked about a baby that died when her mother fell asleep breastfeeding her. I know that the timing of Cora's death was a fluke. I know that it just happened to be that moment her heart gave out. I know that the death was investigated. I was told over and over that it was impossible she smothered in my breast. But, still sometimes I still have the guilt.

Today I'm linking up to "The Journey," a feature on Still Standing Magazine about where you are in your journey. It's been 30 months since Cora was born and died. Most of the time, it feels like 4 months. The stuff that's happened in between now and then seem like a blur.

My husband and I have been together for four and a half years. We've been together longer after Cora's death than before, yet my memories are more crisp from before. Everything that has happened since Cora's death is a blur.

At the same time, I start to worry that I'm doing something wrong. Should I still be grieving every day?

I know the answer, because I tell it to so many other grieving moms.

I definitely feel different than the first months after Cora died. I don't feel "stuck."

This Sunday is Mother's Day. It's my fourth Mother's Day as a mother. The first I was pregnant. But, I feel like less and less of a mother the further out from Cora's death I get.

I don't feel like a non-mother. I'm something in between.

These are just some thoughts, 30 months out.

Twenty Twitter Accounts to Follow for Maternal, Fetal and Newborn Health Information

noreply@blogger.com (Kristine Brite McCormick) — Sat, 05 May 2012 00:59:00 +0000

This is primarily a memoir blog. A place where I remember Cora, talk about my feelings and hopes and dreams for the future. Today, I'm doing something a bit different.

When I was pregnant with Cora, I read constantly. Yet, I never came across congenital heart defects. I read all of the mainstream resources. After Cora died, I've stumbled on so many wonderful resources that I wish I'd known about before she died.

It came to me that when I was pregnant, I would have loved to see a list of Twitter accounts to follow for newborn and maternal health. I never did come across one, so I'm creating my own here. Hoping it helps other mothers.

I put thought into all of these resources, some of them are other moms like me that are interested in keeping moms and babies safe. Others are professional and government resources. All are accounts I follow and trust for information. Of course, you shouldn't depend on any of them for medical advice, but they're a place to start a conversation with your health care provider or to arm yourself with evidence-based studies.

Twenty Twitter Accounts You Should Follow for Pregnancy and Newborn Health Information (in no particular order):

1. @MarchofDimes- The March of Dimes is a nonprofit organization focused on prematurity, birth defects and pregnancy. Each month, the account hosts a #pregnancychat focused on a different subject, all helpful to pregnant or new moms.

2. @AnnDouglas- Ann wrote the book on pregnancy and babies. No, really, her "The Mother of All..." series is a thorough but easily digestible resource for moms and caregivers.

3. @KristineBrite- Yes, so this is me! But, I pride myself on being a responsible information curator, sharing info for pregnancy, postpartum and keeping babies safe.

4. @WHO- The World Health Organization tweets about various public health matters from this account, but is the leading authority when it comes to reliable, evidence-based information for moms and babies.

5. @postpartumprogr- Katherine Stone writes the most read blog about postpartum depression. She tweets about mom's mental health during pregnancy and behind.

6. @KeepEmCookin- An online support group for women on bedrest and education about the signs of preterm labor.

7. @DailyMomReport- Links to news articles and important posts for moms. Includes some pregnancy/new baby information as well.

8. @Unxpctdblessing- Host and creator of #PPDChat, and always helpful if you're suffering from perinatal or postpartum mood disorders.

9. @ScreenBabies- The only all volunteer newborn screening advocacy group. Follow for newborn screening information and tips.

10. @myText4Baby- A program of the National Health Baby, Mothers Coalition. A free text message service for pregnant women, also helpful tweets about maternal, fetal and newborn health.

11. @RobinPregnancy- Author of the About.com pregnancy resources, a go to source for vetted information.

12. @aMillionMoms- A project by ABC News and the UN Foundation, connecting people focused on keeping moms and babies healthy.

13. @PhDinParenting- Author of the blog by the same title. If doctorate degrees were handed out in parenting, Annie certainly would be the first to matriculate.

14. @AccustomedChaos- One in four women will experience miscarriage, stillbirth or neonatal death. Devan is there for you.

15. (Redacted).

16. @BabysFirstTest- The Newborn Screening Clearinghouse, funded by a government grant.

17. @StVincentHRisk- From a hospital local to me, does a great job of providing information for high-risk patients.

18.@HealthyNewborns- The Healthy Newborn Network.

19. @DesirreAndrews- A doula and educator. Tweets information for birth educators, and pregnant women and their families.

20. @KellyMomdotCom- One of the best resources for breastfeeding information and help.

What It's Like to Try to Conceive a Baby After Your First Baby Dies

noreply@blogger.com (Kristine Brite McCormick) — Tue, 01 May 2012 03:15:00 +0000

Time for one of those raw emotional posts again. A glimpse into my world these days.

When you're trying to conceive your second child after your first child dies, you'll worry endlessly that your next child will have a birth defect or other disorder. You'll take folic acid supplements, probiotics, prenatal vitamins for months, and if you miss a dose, you'll convince yourself you're a horrible mom.

You'll take a pregnancy test daily as soon as you are nine days past ovulation. With every negative test, it will feel like a little part of your hopes and dreams died all over again.

If your first baby was conceived effortlessly, like Cora, you'll worry that she was your only chance. That you won't be able to conceive another child.

A small part of you will hope the pregnancy test is negative because you worry that something will happen to another baby.

You'll think about your baby's last night and worry it will happen again. You'll want to breastfeed more than anything, but worry so much that you won't be able to because of flashbacks and fears.

When you see other babies, you'll smile and when you get to hold them you'll think about what it might be like for you to have another. But, after a few moments, you'll freak out on the inside, you'll worry that something will happen to the baby you're holding.

You'll start nesting and getting your house and shape before you're even pregnant, determined to have everything in order as early as possible.

While losing weight and watching what you eat are good things, it's an added pressure to life trying to conceive.

Random people will ask if you're pregnant. If you say no, they'll ask when you plan on it. You'll slam your jaw shut, curl your hands into balls and try your best to refrain from punching them.

You'll worry endlessly that Cora will be forgotten.

You cannot imagine life with a newborn. You only had five days with your baby, so you imagine that life with a child is like those first five days. It's all you know. You remember the lack of sleep, hormones and general frazzle of those first few days and wonder how you can live like that for 18 years.

Other children won't feel that Cora is more loved than them, you're determined to make it so from the start.

You look through baby things and envision getting everything as different as possible this time. You're triggered when you see outfits and toys for sale that you once bought for Cora.

Every possible symptom sends you to Google to see if you could in fact be pregnant, like Google knows.

Some nights you don't know how you'll ever be able to handle having another baby. Other nights, you don't know how you can go on without another child.

It isn't all bad. You realize this time that the best gift your baby will receive from you is your love. You don't doubt for a moment that you won't be able to love this baby.

Standing

noreply@blogger.com (Kristine Brite McCormick) — Tue, 24 Apr 2012 04:01:00 +0000

When Cora died, I expected to be cut down to my knees. I thought I would crumble, and rise one day. I thought I would rebuild.

I never fell. I stood. Tall and strong. I'm rebuilding in every moment. I sometimes rested in a curled up ball. I at times felt weak like I might fall, but I stood. The longer I stood, the more I realized just how strong and powerful I was.

When my friend Fran from Small Bird Studios wrote me asking to be part of her new online magazine, and told me the name of the project, I didn't even have to think about my answer. Still Standing Magazine launches May 5 and from now until then the magazine contributors are posting on our blogs to talk about what we'll be writing about in our monthly posts.

I'll be writing about losing a baby from congenital heart disease, one of the most common causes of infant loss. I'll also write about doing good in your baby's name. It's been my way of coping, and remembering Cora. I'll also write about writing, which will be totally weird. I'll talk about writing and blogging after loss.

Still Standing is a site for baby loss mamas to show their strong roots, to show others that baby loss doesn't have to cripple you, and to show other baby loss mom's just how strong they are. At least it means all of those things to me--and so much more.

For those of you struggling through infertility, the site also has writers talking about that struggle too.

I hope you'll check out my monthly posts on Still Standing and support the project--loss mama or not. I think everyone will be moved by the posts there. The writers are incredible, and the community even more amazing.

A Trip to the Middle of the Atlantic

noreply@blogger.com (Kristine Brite McCormick) — Sun, 22 Apr 2012 19:18:00 +0000

Sputtering and flailing, I fight with all my might to stay above water. Weeks like these are exhausting, and I can barely move from the couch. At first I think, it's not grief. It's been two years, of course it's not grief. But then my dreams become full of autopsy reports, baby girls and memories of Cora. My subconscious tells me it is grief.

Two years later and some weeks, it's all I can do to stay above water and breath.

There's an essay called "Welcome to Holland." It's about having a baby with a disability or medical condition. You think you're headed to Italy and all of the sudden, your plane goes off track and heads to Holland when you get that diagnosis.

As a loss mom, the plane crashes into the middle of the ocean. At first staying above water is a seemingly impossible task. You wonder how you can possibly tread water for days and months and years. Eventually you get really great at it. So great, from the outside, all your family and friends think you might just swim to Italy yet, like they're expecting you to. They think your life will go on like normal--eventually.

But, it doesn't. You fight every single day against the immense weight of the water. A task no one could think possible. It is possible, and you are great at it. But, every once in awhile, your arms and legs get so tired, you think you're not going to make it. I've learned when that happens to stop fighting and to let myself gently float on top of the water, resting and rejuvenating to come back.

No guidebook exists. You cling to your fellow swimmers, other moms that lost their babies. You lean on them, and they lean on you. Eventually, the weight of the water doesn't seem as cumbersome. People from the outside stop by and let you rest on their shoulders and listen to you describe your fight before heading on. If you're lucky, they come and visit often. It's a dangerous trip for them sometimes, who knows when your emotions will swirl into a hurricane, but still they come.

I will never end up in Italy or Holland. I'll forever be in the middle of the ocean. It's not as horrible as it seems. Cora's light shines brightly down on me every single day. I wish we were in Italy or Holland, but I'm thankful that Cora was in my life, and to that I cling.

Photo by Slightlynorth Flickr Creative Commons

Aware

noreply@blogger.com (Kristine Brite McCormick) — Wed, 18 Apr 2012 16:42:00 +0000

For the past three days, I've sat down and started to write a post on this blog. The words never really came. I had something to say, but I didn't know what it was. I'm writing through it today to perhaps discover just what is in my heart. That's what writing does for me, it shows me my heart.

My words are guarded because I'm growing ever more aware of the people reading them. People that I had falling outs with. People I don't know. People that don't like me. People that love me. People that read my blog out of fascination, like onlookers to a car wreck. I think those people are few really. Because I think most people that read this blog take something away from Cora's story. A bit more patience. More understanding of grief. A better grasp of newborn screening for congenital heart disease. Something.

I worry about offending someone unintentionally through my words all the time. For years through journalism school, it was pounded in my head to think about the reader when I wrote. I've found to be a good blogger I have to do the opposite. I have to tune that out and write like no one will ever read my posts. When I become suddenly conscious of the people reading, I become so much more guarded. I'm in total awe of the love and support that draws people here. That became evident when I wrote about being ready again. Within moments, the post had 100 Facebook likes. You all are here, with me. It feels nice.

My world is filled with thoughts of trying to conceive, but I find myself not wanting to share the feelings and thoughts that come with trying again after losing a baby. I might spill it all out in my next post, or I might never talk about it here. It's like it's all on the tip of my tongue.

I don't know all of you. Some of you will read this post and never come back. Others have read all of my posts. I'm sorry that sometimes I block you all out. Today, I'm aware of you all, and I'm thankful. I'm thankful Cora is remembered by so many. I'm thankful so many people care enough to read what I write.

Intentions

noreply@blogger.com (Kristine Brite McCormick) — Fri, 13 Apr 2012 03:06:00 +0000

My baby died. I don't want any other babies to die.

My baby is not here for new memories to be built. I want her to always be remembered.

I grieve. Doing good in my daughter's name keeps me focused and healthy.

I'm far from perfect. The imperfections others point out, believe me, I've already seen them. Up close, many times over.

My baby died. My intention is to save others.

My intention is to make sure Cora is remembered forever.

At the end of the day when I curl up with a book in bed, before my eyelids start fluttering signaling sleep, I always know that I'll sleep with no guilt or shame. I know my heart. I know my intentions. I know my love for Cora. I know her love for me.

At the end of the day, that is all that matters to me.

A free printable I made for fun on one of my side blogs, based on a quote I found. Thought it went well with this post.

Saving Babies...

noreply@blogger.com (Kristine Brite McCormick) — Tue, 10 Apr 2012 23:28:00 +0000

I usually write about congenital heart disease on the Cora's Hopes and Dreams site, but today expanded out to write about another hope I have for the future--that all babies are screened with all available and viable newborn screening tests and parents are aware of the results.

Follow THIS LINK for the post. I share what I learned from Save Babies Through Blogging Foundation.

Ready

noreply@blogger.com (Kristine Brite McCormick) — Sat, 07 Apr 2012 01:23:00 +0000

I haven't posted much about giving Cora a brother or sister on this blog. I've been fairly private about our journey to having more children. I've felt like I didn't need any outside pressure and frankly sometimes the questions hurt.

Yes, we are hoping for a sibling for Cora--and soon. I'm breaking my silence because I feel like everything is lining up now. Before I got pregnant with Cora, Ben and I were seriously getting our stuff together moving from flaky mid-twenty somethings to responsible adults. The few months before I got pregnant were full of doing lots of adult-like things like paying car insurance for six months in advance. Once we found out were pregnant, we continued to work, and hard to become responsible and get our life together.

Then she died, and we slipped. Not completely. But slowly our house was as neat. I didn't cook. Ben started smoking again. We couldn't work as much and struggled to pay for insurance every month. Paying it months in advance was out of the question. Our mental and physical health deteriorated. We lived off of fast food and fell into a restless sleep only when our bodies demanded--sometimes that might be 10 p.m. and other times 10 a.m. That was the first year or so.

One day I started cooking more. We both starting working more. Ben even started his own business. Things slowly started to come together. The past few months I've started to feel like we really were back on track. Don't get me wrong, it's a different track than the one we are. But none the less, we're back on a track.

I'm so reminded of the months before I got pregnant the last time. We just signed a two year phone contract and got new adult phones compared to the temporary pre-paid stuff we'd been doing--we signed our last two year contract right before I got pregnant. I just got my hair cut in a similar cut to one I got just before pregnancy last time. Today we both ordered glasses, and yup, you guessed it, I did that three years ago, too. I started Weight Watchers and have lost weight, just like I had three years ago.

It's time. We are ready.

Following My Own Advice: When My Friend's Baby Died

noreply@blogger.com (Kristine Brite McCormick) — Sun, 01 Apr 2012 22:51:00 +0000

I've written about this topic so many times, I wondered if I should revisit, but I think this is an important post.

A few months ago, I published a short eBook about helping your friend when her baby dies, based on many of the posts I've written on this blog. I was nervous to publish it, and sat on it for several weeks. See, baby loss moms are all different. There is no manual for how to treat us.

But, every day the searches poured in from people looking for information about how to help their friends. Every day, I read at least one status or note from a baby loss mom that felt unsupported by her friends. I knew I had to do something to help. So I published it. And held my breath. I was blown away by how well received the booklet was. It was needed.

Sadly, just weeks after I published it, one of my friend's baby died. It was unexpected, and fairly sudden. All of the sudden, I needed to use my own advice. At first, I worried the book was a load of rubbish. Some of the things I said almost seemed to upset her. She didn't answer my messages sometimes, was it because she hated me? I didn't know what to say most of the time. I thought about just going away and waiting for her to reach out. But, part of me knew that was absolutely the least helpful thing I could do.

I followed my own advice. I thought both of my experience, and mainly of her. I kept reaching out. I let her lead me. I asked her questions.

I remembered her daughter. I honored her daughter. I loved her daughter, whom I never got to meet.

I didn't judge her. I didn't prod her to move on or do anything at any pace but her own.

Later, she told me in such a genuine and loving way how much I'd helped.

I've been on both sides of this, and have a new appreciation for the difficulties of being a friend. Believe me, nothing compared to actually going through it.

I think the number one lesson learned is that you have to set aside your own ego. Don't dwell on if your friend is "mad at you." She's almost certainly not. You're thinking too much of yourself. I made that mistake. This isn't about you. I think this is universal advice for helping a friend through any sort of hardship. Give up yourself, and let it be 100 percent about what is best for your friend. Bend over backwards. Your back will be much stronger for doing so, and so will your friendship.

After Your Baby Dies...

noreply@blogger.com (Kristine Brite McCormick) — Sat, 31 Mar 2012 03:25:00 +0000

Last month, my friend Fran wrote a raw, emotional and beautiful post called "When You Lose a Baby." She was open and honest about what life is like, and some of the truisms when a baby dies. I have to give a nod to her post before starting mine because this is related.

I was in an airport when the beginnings of this post came to me. I don't think I'll ever get used to some of the strange realities of this life. I never, ever imagined I'd do some of these things, but here I am.

After your baby dies...

You'll become almost immobile with fear when you worry you forgot your daughter's ashes in the form of a necklace you were around your neck. You'll be halfway through the body scanners at security when the thought will come to you, "Did I put that necklace in my bag?" You'll want to scream and rush to your bag to check. But, you can't, the TSA will jump all over you. Instead, you barely breath and think that you might pass out until you can race to your bag to check for the necklace. When you find it carefully tucked into a zippered pocket, you'll clutch it and breath a sigh of relief.

When a television show or the news talks about a baby dying suddenly, you'll scream at your husband, "Change it! Change it!" You won't stop shaking for several moments after the channel is flipped. If there isn't time to change the channel, you'll stuff your fingers into your ears and time will stand still until the story passes.

Some days you won't leave the house because you can't. Even a few years after your baby dies.

You'll scream out in your sleep, even after your baby has been dead for a few years.

You walk around in a perpetual state of fatigue, not from late nights rocking your baby, but from the restless, nightmare sleep combined with the feeling that you run a marathon during the day, missing your baby.

Conversations with friends don't focus on celebrities, gossip or the weather. You regularly talk about different ways to decorate your baby's tombstone, or how to find a urn that you like for your child.

I don't write this for pity. I know that if you haven't lost a baby, you probably don't want to read about this side of things. But, it's my life. All of the above have happened to me. Almost one on a daily basis. From understanding springs compassion, and I hope that this will give you an idea of why your friend that lost a baby might seem spacey some days, or why she doesn't want to meet you for coffee anymore.

Cora's Butterfly by CarlyMarie

Dear Cora: You Saved a Life

noreply@blogger.com (Kristine Brite McCormick) — Fri, 23 Mar 2012 16:13:00 +0000

Dear Cora:

I have someone extremely important to introduce you to. He wouldn't be here today if it weren't for you.

Meet Gabriel.

Gabriel was born February 1, 2012. One month to the day Indiana started screening babies in Indiana because of you and Cora's Law. Like you, no one knew he was sick. The pulse ox probe was strapped on him, and the numbers were off. That set off a series of events that kept Gabriel with us here today, and in the arms of his loving parents.

His family lives 45 minutes from the nearest hospital in a rural part of the state. If he'd gone home...well, I don't think anyone wants to think about that. He had a serious defect, and once his fetal circulation closed (this happens usually at about five days of life, hence why you died so suddenly at the fifth day), his heart would not have been able to keep up and keep him alive.

Because of Cora's law, he was rushed to Indianapolis, where doctors saved his life.

He's doing great today! Just look at him!

Mommy cried when she met him. She got to hold him, too.

In this baby and this family, my love for you lives on. It was our love that created this pulse ox law. It was our love that saved Gabriel's life.

Love,

Mom

P.S. Everyone else will be able to see Gabriel again, too. WRTV6 was on hand to interview his mom and me. That clip should air Monday, probably in the 5:30 p.m. and 11:00 p.m. newscasts. It will be online, too!

An Open Letter to the March of Dimes: Thank You

noreply@blogger.com (Kristine Brite McCormick) — Wed, 21 Mar 2012 21:21:00 +0000

I super duper swear no one at the March of Dimes asked me to write this. They definitely aren't paying me. In fact, no one from there knows that I'm writing this. I had to get that out of the way. I've been thinking of writing this for sometime. I think it's important to recognize groups doing good. In the nonprofit world, unfortunately all groups are not equal. The March of Dimes stands out in my mind. Here's my experience.

Dear Staff Members of the March of Dimes:

You've been there since my daughter died, in so many ways and on so many levels. Your organization is huge. I'm sure many of you don't know each other, especially on the state level. So it's come as a huge shock to me that act as one. Your treatment of me and your actions have been like one giant cocoon of love and kindness.

After my daughter died, my sister understandably took about a week off from work. On one of her first days back, she told me how hard it was to go back, but ironically, March of Dimes was there. Some of your staff just happened to stop by the restaurant where she was working. She told you about Cora. You gave her some small care package items, and you told her that I should store my story on your site. So I did. It was one of the first places where I wrote it all out.

On Twitter, you came across my story as I poured my heart out, so lost and confused. You shared my story. You gave me resources about congenital heart disease. You shared grief resources with me. And, you remembered me. You reached out to me more times than I count over the next days, weeks and months. In fact, eventually, you became more than a Twitter profile, and I developed a friendship with the person behind the profile. She supported my advocacy efforts, and invited me to Twitter chats to talk about my work.

When it came time to testify for the pulse oximetry newborn heart screening bill in Indiana, I showed up along with a few mom friends. I was scared and overwhelmed. I never contacted anyone with the March of Dimes to testify. I wasn't as savvy about these things as I am now. But, you showed up anyway. You were the only people that showed up to speak out for babies like my baby that day. You testified in support of the bill. I was so relieved to have you on my side that day. Most importantly, I was relieved to have someone on the side of Indiana babies.

See, people from the March of Dimes have just been there for me. They haven't dismissed me as just a grieving mom, or ever given me the impression that we're anything but a team.

Last year, a friend nominated me for Indiana March of Dimes Mom of the Year. You treated me like a rockstar. I got my hair done, had a lovely evening with dinner and dancing and felt so special.

In other states, you're working on getting pulse oximetry mandated, and I get emails from some of your state advocacy representatives. You don't dismiss me. You come to the table as a partner, and you're appreciative and cordial. Furthermore, you are inclusive of parents in the process in your state, from what I've seen.

Just last week, I finally got to meet Beverly, the woman behind the Twitter account, which was like visiting with an old friend.

Thank you for being you, all of you. I always knew the March of Dimes was there for babies. This experience taught me that you're there for their mothers, too.

Sincerely,
Kristine
A Grieving Mom in Indiana

Why Us?

noreply@blogger.com (Kristine Brite McCormick) — Sun, 18 Mar 2012 19:49:00 +0000

In all of this, I haven't taken many, "Why me?" moments. I know that moments like those will only increase my suffering. I also know others suffer much more than I. Sure, losing a child is the worst imaginable tragedy, but that doesn't mean I have to suffer the rest of my life.

The moment Cora died was a tragedy. Her life was not. What has happened after she died is not.

Despite the moments of pain and sorrow, I know I'm much luckier than a lot of people. I feel so much compassion to people that do suffer each and every day, from the pain of addiction, from narcissistic personalities, from abuse or neglect and any other sources of pain and suffering. I see others get caught up in a cycle of "Why me?" and I see the suffering that comes from that. I've been one of those people at various stages of my life.

I had one of those self-pity moments this weekend, only it was just about me. I finally got to meet up with two of my fellow grieving moms for an afternoon and evening together (time that flew by like it was just 15 minutes by the way). These women are incredible. Strong. Compassionate. Kind. I never got the "Why me?" vibe from them at all, that's not what I'm saying.

But I looked over at Heather smiling at a baby boy and wondered, why? Heather has lost two children, and is a beautiful, kind and smart woman. Why her? She's just so thoughtful and sweet.

I turned to Michelle, enjoying her baby boy, knowing she wanted nothing more than to do all the things she was doing with her youngest son with her middle child. The one that died a few days after birth. The one that will never laugh. The one who will never play with spoons at the breakfast table. Michelle is incredibly charismatic and thoughtful. The type of person everyone naturally flocks to and the woman that always gives me the most thoughtful beautiful gifts. Why her? Why? Why did she place her son in a tiny coffin and bury him?

And me. The baby lover. The woman who has always mothered everyone in her life. The woman that doesn't run out of patience with children. The woman that's always loved them. The woman that tries to always be kind and caring. Why me? Why isn't my daughter here?

Truth is, no one deserves this. No one deserves to lose their baby. Not even the most selfish, spoiled person alive. I literally wouldn't wish this on my worst enemy.

Today I'm taking time to ask, "Why us?" I'm acknowledging that none of us deserved this. I'm sad for my friends, and I'm sad for myself. I'm sad for strangers, and I'm sad for relatives.

Why us? Why anybody? How can this even happen?

To all these beautiful souls, now forever broken.

By So Sylvie on Flickr Creative Commons

Dear Cora: Just Some Thoughts

noreply@blogger.com (Kristine Brite McCormick) — Thu, 15 Mar 2012 02:20:00 +0000

Dear Cora,

It's been such a long time since I wrote to you. I think about you every day, almost every minute of the day. I think a lot about your pretty, soft blonde hair and the way you felt in my arms.

Sometimes, I think about what you'd be doing right now. Daddy and I started to have a conversation about it, but then we realized it was just too hard to even think about. Speaking of Daddy, he's the sweetest dad ever. One evening, he came out of the spare bedroom, where we keep many of your things safely stowed away from our dogs. We don't really use the room so I asked him what he was doing, and he said sometimes at night he goes in there, just to touch some of your things. He's sweet, and he misses you.

I'm constantly in awe of the strength I've gained from your short time with me. While something so horrific, so terrible might seem to be a drain (and I am tired and drained), it only made me feel stronger and more confident. I'm still working on the confidence things.

In many ways, you're helping me reach a dream. From the time I was a little girl, I've always wanted to be a writer, and now I am. I'm working on several things. People actually read my writing and feel something. People like it. I've started, quite timidly, answering "writer," or "author" when people ask what I do. I always wanted to be an author, I just never thought I was good enough. After you died, I realized it didn't matter if I didn't think I was good enough. I should write anyway because I had something to say. Thank you for everything you gave me.

I'm sorry for rambling baby girl. I told a lot of people about you this week. I needed to tell you that.

Love,
Mom

The First of Many

noreply@blogger.com (Kristine Brite McCormick) — Fri, 09 Mar 2012 22:38:00 +0000

Today I was honored with that beautiful award today, the Spirit of Service Award from the Indiana Perinatal Network for my advocacy work in Indiana and across the country with pulse oximetry screening, or screening newborn's hearts.

I knew I'd won, and honestly wasn't going to write about it here or make a huge deal. It's a huge honor, and amazing that I was recognized in front of professionals working with pregnant women, newborns and trying to make life better for babies. I wasn't going to write about it to keep my own head in check. I never want to get off track of what this is all about--not awards, saving babies.

The day was so amazing, I'm telling you, but quite humbly.

I was introduced, beautifully. I rarely ever cry when talking about Cora publicly or listening to others talk about her, but the introduction was just so sweet and perfect, I teared up. And then stood to make my way to the stage.

Everyone else in the room stood too.

The recognized me with a standing ovation. The remembered my daughter. They stood up and showed that they support what I've done to make life better because of her. It doesn't take the pain away, but it makes me happy. It makes me proud of her.

After, something else happened that made me even happier.

I can't be descriptive, yet. I can't share details, but I'm bursting to do so. I got clearance (privacy laws, ya know) to share this one simple powerful sentence.

Cora saved a baby in Indiana because of the new screening law.

The circumstances are such there is no doubt the screening saved this baby's life.

As sad as I am that baby has heart disease at all, not knowing would have been even sadder to me, and to that baby's family.

She saves lives now.

I wish no baby was born with a broken heart, but know that many will be, and thanks to Cora, the future for some of these babies got a whole lot better. With privacy laws as they are, there might be more babies. I know there have been some others in some other states that were diagnosed earlier, or had other problems found after asking for the screening because of Cora.

The Stranger Is Me

noreply@blogger.com (Kristine Brite McCormick) — Tue, 06 Mar 2012 02:51:00 +0000

I came across this picture tonight while working on a project. I could remember that day.

It was the day of my baby shower in November 2009, just a few weeks before Cora was born. I remembered how I'd unwrapped everything with care, and how excited I was to meet Cora.

I remember my worries and thoughts from then, and that girl, me, seems like a different person.

She might look the same. Same glasses. I still smile the same, when the smiles come, but so much of this person I don't recognize.

This lady, me, knows pain and loss. Her father died when she was young. But, she doesn't know what it's like to lose part of your soul. She hasn't been through the pain that I have.

She's pretty lucky, actually. All of her prenatal appointments went so well, and she's not had to spend her pregnancy in worry.

She's much more superficial, worried that her baby has every "thing" she needs. She doesn't realize all her baby really needs is someone to check her heart.

This woman is me, but she's also a stranger. I wonder if we would get along should we meet. Of course, that's impossible. But, I do feel like a different person. Finding this picture tonight confirmed it.

I was reborn. The day Cora died, I was reborn.

A Letter to Cora's Grandma, From Cora

noreply@blogger.com (Kristine Brite McCormick) — Fri, 02 Mar 2012 02:22:00 +0000

Today, I was talking to Ben (Cora's daddy) about everything my mom, Cora's grandma, did for us after Cora died, and how I don't know if we would have made it without her. I realized a letter to her is well past due. I decided to write it as I might imagine Cora would see it, so it's a letter to her from Cora. I haven't cried while writing a blog post in months, but find the tears already welling up.

Dear Grandma,

I loved it so much when you snuggled me. I loved that you sang songs to me, just above a whisper so they were between you and me. I knew I was loved when you showed up at the hospital when my mom was in labor with me--even though my mom told you to wait. I can't believe you sat patiently in the waiting room all those hours--just waiting for a few moments with me!

The first time you held me, I could tell you loved me. And, I loved you. I loved you so much. My mom thought it was so cute and sweet how you and Aunt Megan fought over a few moments to hold me. You even fought about changing my diaper. My mom says she's never, ever seen you happier.

That night, when I died, wrapped in love in my mommy's arms, you were there for her. She asked the nice police officer to come and get you, and he did. You walked into the little room, where my mom shook her head, and then you knew. You cried, but you stayed strong, for her. You cleared off everything on the coffee table in front of mom and dad, and when they were close to losing their minds, you held them and you told them everything would be alright. Without you, I don't think they would be alright. My mom gets all kinds of credit for the things I help her do, but people don't realize that you, daddy, Aunt Megan, Uncle Johnny, Uncle Patrick and the rest of my mom's and dad's family keep her going.

I saw when you cried over my body when my mommy was in the next room on the stretcher after she collapsed. I saw how the doctor man that tried to save me started crying with you. I saw you hug him.

When mommy went home without me, she went home with her mommy, which is the only way she thinks she could have bared it. You rode home with them. You were there as she had to replay the entire awful event to the nice coroner woman.

After they left, you moved the stuff like my sleeping spot, my paci (which I looooved so much, you 'member, right?) and my diapers--all that day to day stuff into the other room. You lead my mommy and daddy into their bed and you pulled the covers up tightly over them. My mommy thought there was no way she could ever sleep, but you came over every little bit to check on them and after she saw you peeking in, she felt safe and she did drift off for a few hours.

First thing when she woke up, she went to find you, and she cried and cried and cried. Over the next weeks and months, she'd wake up and go right to find you when daddy wasn't near. She felt really lucky that you lived next door.

You are the best grandma ever. I'm really glad that you got to hold me. Now, I stay close to you and hold you when you're feeling sad. I hope you can feel my love around you always.

Love,
Cora

Cora and grandma. I really don't think I've seen my mom happier than she was with Cora.

'Dead Kids' Do Not Make Bad Legislation, An Open Letter

noreply@blogger.com (Kristine Brite McCormick) — Wed, 29 Feb 2012 08:55:00 +0000

Yesterday, I stumbled across an article about a family in New Jersey seeking to add legislation in that state that would place an AED in every school. I read with interest, because I'm a firm believer that AEDs should be in every school and at every sporting an event. If you don't know what an AED is and are interested, it's a device that saves lives in the event of sudden cardiac arrest. This family lost their daughter, Janet, a cheerleader, when she collapsed suddenly at an event. Having an AED on site is important, because to work, it ideally must be used within four minutes, according to the Red Cross.

That's not what I want to talk about today. I read the entire article, and thought both, "Kudos to them, and I wonder how I can help their mission." I should have stopped reading, but I browsed through the comments. Yes, the comments are often a mindfield of ignorance and rudeness, but these comments have spurred me into action. Just a sampling:

DJ_Jaws, who is in favor of this legislation, had this to offer, "Usually, dead kids make bad laws." While a commentator named IFHTC said this: "I understand that parents want a place to focus their grief but putting laws into place every time a child dies seems like overkill. Not everything should have to be a law, somethings can simply be done out of the art of common sense." Several of the other commentators mentioned how they were against laws that came as a particular tragedy.

For the rest of my post, I'd like to speak directly to these commentators, and everyone that rolls their eyes and dismisses a grieving parent standing in front of a camera urging for some sort of legislation. I'd like to speak to everyone that thinks that "dead kids make bad laws."

Dear Uneducated Commentator:

My baby died. Now, society benefits. While from the outside you might think my crusade is about getting justice, wanting some obscure situation legislated for, or think that I'm so clouded by judgement that I could never advocate for legislation because it's needed, will help solve a public health problem, and won't cost a lot of money.

My baby died, and in her name, new legislation was added in my state.

You are welcome.

Your children, your children's children and so forth for the rest of history until a cure for congenital heart defects is found are welcome.

Advocating for new legislation in the face of tragedy is not easy. I did not rashly jump to find something, anything I could introduce as a bill that was related to my daughter's death.

I found out that something quite simple could have saved her life. I realized that the quickest way to get babies' help in my state was legislation. I realized that every baby needed something, and that in some places, delivering that to babies would mean legislation.

You are welcome.

I researched. I flew across the country to speak to researchers. I studied the evidence. I asked myself and others the hard questions. I went through the process of convincing a legislator. I sent that legislator more and more information, which he looked over, sent to research teams and sought out the opinion of other lawmakers--before the bill was even considered for introduction. I learned about the challenges. Was a realist about both the problem and my proposed solution. I didn't sleep some nights. I volunteered my time to save other babies.

You are welcome.

Families that lost a child are powerful force. One that you will never ever be able to curb. And for good reason. Emotion drives action, yes. However, we're not stupid. We don't want to harm other children or to create a bad law in our child's name. Our child's legacy is too important to us. We're smart enough to weigh our emotional needs to create something everlasting for our child versus our need to make sure our child's name and memory are remembered in the right way. We allow our child's memory to be remembered by the public, which opens up the door to people, like you, that don't get it.

You are welcome.

Dead children do not make bad laws. Bad legislators make bad laws. Bad information makes bad laws.

My baby died. A law was created in her name.

The law was made not because my baby died. A law was made because it was the right thing to do, and because I had the courage, dedication and strength to make it happen. Without people with courage, strength and dedication, nothing good would ever get done. It takes a whole lot of people with a whole lot of courage, compassion, and strength to make change. Lucky for everyone, there are a lot of us out here--many of us have lost a child.

You can never match the desire of grieving parents to do the right thing, bring change and do good.

You are welcome.

Guided

noreply@blogger.com (Kristine Brite McCormick) — Sun, 26 Feb 2012 07:38:00 +0000

I ask myself every day, multiple times a day, "am I doing what I think best, am I setting aside personal gain and personal agenda to the best of my ability to help mothers and babies?"

I have to constantly give myself this gut check, otherwise, all would be lost. I would have caved to pressure a long time ago. I don't always do what's best. I don't always do what others think are right. Sometimes in the end what I thought was best and right turns out not to be, but I do what all mothers do, I ferociously protect my daughter and try to do what I can for her.

In this case, I protect her memory and I protect other babies in her name. I've made so many mistakes along the way, that if I could have quit, I would have. But, I can't just walk away from mothering my child.

I've been bombarded with people pulling and pushing different ways so many times, that if I weren't giving myself the multiple times a day gut check, I'd be so lost and confused.

But, it's easy when I go back to that question, "will this mean that babies live and is it right?" I keep that to guide me through the tough days which turn into weeks and then before I know it I've weathered more waves than I thought possible and floated through a month of tough times. I get upset, no doubt. But, the waves, no matter how high, roll over me and I've learned how to breath under their weight.

I urge everyone to find the question then most need to ask themselves, and to ask it daily. What's important to you? What guides you?

More than Just a Broken Heart

noreply@blogger.com (Kristine Brite McCormick) — Mon, 20 Feb 2012 04:31:00 +0000

In this month of hearts, it's easy for me, and I'm sure most people, to lose sight of the fact Cora was much more than just her broken heart. Cora was born with a heart defect, but that's no who she was. I'm an activist and advocate for other newborns born with heart issues, but "Congenital heart disease" doesn't even begin to describe my relationship with Cora.

She was my entire life. She is my entire life. It's hard to imagine that she'd be talking, walking and perhaps starting potty-training now.

Our short time together meant so much. I'd do it all over again just for the 9+ months and five days I had with her. I'd go through every moment of this pain again, just to have her.

I looked at her face, and knew a mother's love. The world looked different during those five days. An inner peace infiltrated, even when I cried to my husband when hormones took over.

That love and compassion I felt for her, and felt for everyone, is why I started doing good in her name. I want that love to multiply. I want the world to be better because Cora was here. The world is better because Cora was here. Cora's love hasn't left. Her beauty is still her. I'll always be an optimist because of her. I know the world is beautiful, because of her.

Free eBook: When a Friend's Baby Dies (Helping Your Friend After Babyloss)

noreply@blogger.com (Kristine Brite McCormick) — Wed, 15 Feb 2012 07:07:00 +0000

Sign up to get the book "When Your Friend's Baby Dies," emailed to you for free. (Scroll down past the cover of the book for instructions.

Since I wrote them, the posts about helping a friend through babyloss are reached every single day from people searching for information about helping a friend after her baby dies. I see the search queries, and wonder if they found what they needed. A girl needs a good friend after her baby dies, and often she doesn't get one. I don't think it's usually because her friends are jerks, but because they don't know what to do.

I came up with the idea of writing a book of everything I've written in those posts, and more. Something friends could print or leaf through on their tablets. It's been a few months since I began working on the book. It's been done for weeks. I've sat it on it for awhile.

See, we're all so different. By telling friends how to help, would I be sending the message that there's a correct way to grieve? There's no manual about how to parent a dead child, so how could there be one about helping a friend through that loss? I went back and forth about rather I would share it at all.

After much thought and internal debate, I decided I should share, with a disclaimer that I'm a. no expert and b. all moms are different and I don't want them pushed into a little grief box.

People want this information. I have a perspective they're seeking. I hope that my message is clear. I just want to help get grieving moms the support they need.

The book is free. You are free to share it, distribute it and link to it, with some caveats, you may not change any of it, you may not claim it as yours and you may not charge for it. Scroll down to get it emailed to you.

Without further ado, I present to you, "When a Friend's Baby Dies."

To Get the free eBooklet:

1. Fill out the form with your name and email.
2. Wait for the email confirming your sign up.
3. Click on the link in the confirmation email.
4. After your email is confirmed, the book will be emailed to you.

NOTE: You must confirm your email address to get the eBook. You do so by following the instructions on the confirmation email.

Update: I'm so blown away by the response to this eBook. I published it in the middle of the night with relatively slight promo, and have been getting emails, messages and comments all day. Tells me it was a needed resource. I want to make it more widely available, so I put the booklet on Amazon.com in Kindle format. Unfortunately, you have to charge at least 99 cents, so that's what it's priced at. I can make it free for five days, and when I do, I'll share through my Facebook and Twitter that it's free that day if you want it on your Kindle or tablet. The book will always be free to download and share in the method described above.

Update Again: I put the book on Barnes and Noble for Nook readers. It costs $1.00.

Drafted

noreply@blogger.com (Kristine Brite McCormick) — Sun, 12 Feb 2012 01:06:00 +0000

From Examiner.com

I'll always be Cora's mother. As I previously wrote about, that means I'll always be mothering her. I can't play with her or tuck her in at night, instead I parent her by working in her name. Other moms might parent a deceased child by visiting their grave site or talking to them--there's no right way to be a mom to a dead child.

For me, the progression to how I parented Cora after she died, didn't even seem like a choice. I saw a need. A need to make sure that she was remembered. That her love and beauty were spread. I think that's what she wanted. I felt like to be a good mom to her, I needed to help other moms and babies. That's what felt natural to me. That's what was right for me and my child. Motherhood has been a beautiful, transformational experience, even years after my baby died. It still feels like something active, not a passive title, but something I live. All of our children are different. We try to parent them the best we can.

As beautiful as this journey has been, sometimes parenting her isn't easy. Sometimes working for her is tough. I have to admit, I've thought about quitting quite a few times. I knew no one would blame me if I did. I'm quite familiar with quitting when a job becomes too tough or uncomfortable--I'm a bit ashamed to admit. Before I had Cora and I worked, I floated around from job to job a bit. When I reached a point of extreme frustration, I'd quit and find something else. I was young, this isn't too unexpected.

The past week or so has been frustrating. I've felt like I was doing a bad job. I've felt like I'd fallen behind and worried about making upcoming deadlines. I felt the pressure. It all felt heavy. I had to get caught up in the side of awareness and activism I don't like, the politics and maneuvering.

I was really honored to get the opportunity to go to a stakeholder's meeting in Washington about pulse ox--with the researchers, advocates, clinicians and others that were working on this. As much as I learned and am glad I went, it wasn't easy. See, I wasn't there because I was paid, or because I was scientifically interested or because I was networking. Unlike 99 percent of the room, I was drafted. I was there parenting Cora. I was quite upfront about my role and title there, but at the same time felt pressured. While small talk and laughs came easy to most everyone else, I laughed and smiled with extreme effort. See, I had to listen over and over and over again about a simple screening my daughter didn't get that saved her life. I had to be on the top of my gain. I couldn't show the emotion bubbling beneath the surface. One emotional crack, and I'd be chalked up as an irrational and emotional grieving mom clouded with my focus on my child.

She does cloud my judgement, but my judgement is not clouded by the things that shape the motives of other stakeholders in pulse oximetry screening. I was thinking about how I could advance my career, get a raise or increase my job security. The people working on this are amazing, and truly wonderful, and I have no doubts that for almost all of them saving babies is their number one motive, but nearly none of them were drafted into this like me. Nearly none of them have to stick it through. I think most moms have those parenting moments where they think they can't go on and wish they could quit--but they can't. Well, I have those moments too. Just like those moms can't leave their child at the mall as much as they'd like to in the middle of a meltdown, I can't abandon everything I'm doing. I can't stop being her mother. I can take breaks, like I've done today, just like other moms might send their child to a sitter or relative.

This work is different for me, as another mom helped me sort out when I called her upset. Mary Ellen was the one who likened it to being drafted.

This work is my connection to my baby now. In many ways, it is my baby. It's my way of parenting my daughter.

That's not to say my contributions are more valuable than any other at any level, they aren't. I don't have the skills and resources to begin to do most of the things people in that room can accomplish. I'm not better equipped to do this. But, there will always be a difference. I will always fight to be at the table and scrap to make sure this is doing in the best absolute way to save other babies.

By saving other babies, I'm doing the best I can to mother my baby.

I know other parents can relate to those stressed to the max moments when you just don't know how you'll possibly be able to do this. Somehow you do.

Somehow, I know I will, too. Because I have no other choice. I'm her mother.

I hold her heart with me and use it to save other baby's hearts.

While some soldiers volunteer for war, others are drafted. I was one of the unlucky draftees.