A Familiar Face

As I’ve written numerous times, when I first heard the phrase congenital heart defects from the coroner, my husband and I reached for our dictionary to look it up. The dictionary was no help, but I surmised it was a heart problem present at birth.

A few days after Cora’s funeral, my search to find out what happened to her started. I screamed out for help through social media, and my pleas were echoed and carried by retweets on Twitter and sharing my blog. People reached out, and I started to learn a bit, but still felt alone and confused.

Then finally a familiar face popped up. Someone I could trust. Someone I knew from before. Lisa and I first chatted because we both were freelance writers, at least a year before I was even pregnant with Cora. I think I knew her son was ill, but didn’t know the details. We lost touch, but through my pleas, she found me. She hasn’t left my side since. When things get confusing, I know she’s there. She was the first person I remember reaching out to me from the congenital heart defect community. She helped me find answers and lead me to more support.

She shared my story over and over because she knew it’s what I wanted at the time.

I wish everyone that so suddenly finds out about CHD, rather from a surgeon about to operate on their baby or from the coroner had a friendly face familiar with that world as a guide.

Today her little Owain is having open heart surgery. I can’t be with her to pace the halls or silently sit in the waiting room. I can’t be that light that she was to me. But, I can ask everyone to think of her today as her 3-year-old son undergoes the Fontan. I can return the favor and let her know that I’m a familiar face, out here, thinking of her.

I know Friday’s are frantic, but if you have a moment, could you stop by her blog to let her know you’re thinking of her and praying for Owain?

Ten Things Not to Say to Baby Loss Parents

After a child dies, inconsiderate words sting like bullets.

Most of the time, the person means no ill and has no clue that the words sting. Unless you’ve walked in these heavy shoes, it’s hard to know what to say. Honestly, I’m usually at a loss of words when I reach out to newly grieving parents, but do know some things really are better off left unsaid to grieving parents. I’ve seen a lot of “Ten things not to say to such and such group” articles circulating the last month or so, and thought I’d include a list for parents that have lost a child. I wrote something similar last year, but think this is one message worth repeating. My heart aches when I read how a fellow grieving mom has been stung by words.

1. Your child is in a better place.

Because a coffin or urn are better than living and breathing. I understand the religious sentiments behind this one, but this is a loaded statement. Are you implying that my child didn’t deserve to live? Are you trying to make me feel better? Are you trying to make yourself feel better?

2. At least she wasn’t older/younger.

I was actually told this once. At least she wasn’t older, I can’t imagine losing my daughter. So because she was just a baby it doesn’t hurt? I’ve also seen people claim that losing a baby is harder because you never get to know the child. That’s a ridiculous statement. What sort of macbre person sits around and thinks about the pain level associated with a child’s age?

3. You’re not the same. 

No, I’m not reacting in the way you want, so you’re throwing it back at me. Of course I’m not the same, and you implying that these changes are bad simply comes from your laziness/unwillingness to know the new me.

4. God wanted her.

This one is really bad. I’m not even going to go there.

5. She’s no longer suffering. 

But, I’m suffering. Also, please don’t remind me of the pain my child was in while here.

6. It’s time you move on.

What are you the grief police? Most grieving people read about grief and loss and know what’s normal and not. I have no choice but to move on, with every breath I take time keeps moving.

7. Are you going to have more children?

I honestly think that asking anyone about future children is rude. So many people battle infertility and suffer silent miscarriages. You never know what’s going through the person’s mind, so refrain from asking. When and if I get pregnant, I’ll tell you whenever I’m ready.

8. I know what you’re going through…

Unless you have lost a child, you really don’t.

9. When my pet died….

Keep the comparison to yourself, even if you start with, “I know it doesn’t compare.”

10. Everything happens for a reason.

No, really, this didn’t happen for a reason. Once in awhile, there’s no reason or explanation for things. Nothing can explain away the death of my child.

Dear Cora: Ten Things You Should Know About Daddy Part II

Dear Cora,

Last year around Father’s Day, I wrote to you with 10 things I thought you should know about daddy. I’m doing it again this year.

1. When we found out we were having a girl, I bought some little pink shoes. Daddy squeed when I showed him. I’ve never heard him squee before or since. He still has them, tucked away into a drawer.

2. Daddy said that he was going to take you with him everywhere he went. I think he would have.

3. Sometimes, daddy falls asleep with Lucy on his chest. I love to watch him sleep with a little puppy on his chest.

4. In general, daddy gives mommy whatever she wants. I think he would have done the same for you, too.

5. I’ll never forget daddy whispering “she’s so cute” in total awe to me at the hospital after you were born.

6. When he asked mommy to marry him, he got down on one knee in the snow.

7. Daddy is a great cook.

8. He’s mommy’s best friend.

9. Daddy couldn’t wait to teach you how to play softball. He wanted to coach your softball team.

10. Mommy told daddy you might not like softball, and it was okay if you didn’t. He said it was okay if you didn’t, but that you would like softball.

Hope you wish daddy a Happy Father’s Day!

Love,
Mom

I created a link up for other grieving moms to write letters to their husbands from their babies.

Father’s Day Baby Loss Mother’s Post Link Up

Father’s Day is this weekend, and I find myself in constant worry for my husband.

He talks about Cora some. He let’s me talk about her whenever he wants. But, sometimes he gets really quiet and tears form in his eyes.

Mother’s Day wasn’t easy.

Father’s Day is twenty times more difficult.

Watching my husband grieve and hurt and not being able to fix it for him is one of the hardest parts of this. I’d take all of his pain and feel it for him if I could. But, I can’t.  Not to mention my father died when I was a girl.

Last year, I wrote a note called “Dear Cora: Ten Things You Should Know About Daddy” for Father’s Day. I wanted to talk to Cora about her Daddy. A couple of other grieving mothers loved the idea and wrote something similar.

My post will be up tomorrow (or soonish).

You can use this badge if you’d like.

Link up your post below!

The link up tool is opening in a new window for some reason, so I’m listing posts here:

James’s Project
Unspoken Grief

It Was Worth It

Ben found some work and is currently working as a courier. When he told me he had a delivery to Fort Wayne, the town where Cora was born, I was so happy. We were going to spend the night with my mom who lived about twenty minutes south of Fort Wayne in the town Cora died.

Since Cora’s died and we’ve moved to Indianapolis, I’ve noticed that I’m triggered less. So many places in both the town she was born and lived have give me such a strong reaction. I didn’t think much of this trip. We’d go somewhere in Fort Wayne, drop the package off and go to my mom’s.

Then Ben got the phone call telling him where the package needed to go. The hospital. The one where Cora was born. The one where I excitedly went to birthing classes. The one I where I gave birth to a magical, beautiful little girl and felt my heart swell. We’d already told my mom we were going, and Ben committed to taking the delivery so I had to to.

As we packed, I couldn’t find any of my clothes. I have a tiny wardrobe and everything was hanging on the line to dry. I keep the clothes I actually wear in a dresser. I pulled the drawers open and flung away everything inside looking for something that I could wear for pajamas that night. Shoved in the back end of one drawer were the pajamas. The pajamas I wore when Cora died on me. I thought I’d thrown them out. I shoved them into my over night bag and we were off.

At the hospital, I relived our entire process there. If you’re friends with me on Facebook, you know that I was already having a rough week because I realized I had this photo, of the nurse checking Cora’s heart at that hospital. I’ve cropped the nurse out here because this is not her fault.

After we left the hospital, we drove past the OB’s office I went to with Cora and took the all too familiar drive home.

We arrived at my mom’s house in the wee hours of the morning. I unloaded and plopped down. In the exact spot my daughter died. My mom moved in when we moved out. After a few hours, we crawled into bed, in the room that was Cora’s nursery.

As I lay trying to sleep, I started to relieve it all. I started to think about the pants I was wearing that night and in bed while I did all this thinking. I thought about the clothes she was wearing that night. We have them, even though they were cut up as the doctors worked on her. Before they were returned, they were laundered, because they were full of blood. They were washed with harsh laundry detergent and smell nothing like her. I thought how I’d them to smell like her. I thought about washing them in baby detergent. And then…. something quite magical happened.

I sniffed in once. Could it be? I sniffed in again. Yes, it could be. Cora. I smelled her again. I thought I’d never smell that again. A few more deep breaths and the smell was gone.

All the pain from the day, all the reliving was worth it for those few sniffs of her wonderful baby smell.

Just like all the pain has been worth this amazing five days with her.

Sisters of My Heart

On the one month anniversary of Cora’s death, I scheduled a grief massage.

As I slid out of my sweatpants and t-shirt–my grief wardrobe–my eyes were drawn to a poster on the wall. A gigantic heart took up most of the image. The heart looked almost exactly like my heart Cora necklace I was given by her birth hospital. It was even white, which struck me, rarely are hearts white. The inside of my necklace went with her while the outside I wore everyday, until it recently broke.

As soon as I saw that poster, I knew that I was supposed to be there that day. As the massage therapist, an older woman who was both gentle but firm at the same time in her movements and speech, worked my tired muscles, I told her some of my grief complaints. She told me she used to work in an hospice. She also told me about her friend, and how she was present when her friend’s baby died. She told me the friend learned that the hospital should have done something different and how her friend advocated for change, that eventually happened. I told her about pulse oximetry. She told me about growing lavender in her yard. I swooned. She was my kind of people. 
The most profound words she spoke that day came near the start of our conversation as she told me about her friend whose baby died. I doubt she even knows the impact those words had on me. She told me her friend was a “sister of her heart.” She went on to explain that from the moment they met, they were connected. I knew exactly what she meant. That feeling of meeting a new friend with an instant connection. Women after your own heart. 
I’m lucky to have found sisters of my heart after Cora died. As my heart changed and both shrunk and swelled at the same time, I found ties cut to some of my older heart sisters. This hurt my heart immensely. I worried that my heart couldn’t connect like that again. Shortly before writing this, I hung up the phone with a new sister of my heart, and thought about our connection. I remembered those words from that day I’ll always remember, and felt so lucky that indeed I am still able to connect, even with my broken heart. 
I don’t want to name names for fear of forgetting someone with my grief brain. But, if you’re a sister of my heart, you know, because you feel it in your heart, too.