Dear Cora: You’ll Never Die

Dear Cora,

This is another of those posts that I write with my eyes closed. My heart talking directly to you. Some days it feels like you’re so close. I can still feel you in my arms. Other days, it seems like you were but a whisper and only existed in my dreams. I grasp and grab for you but can’t reach you. I remind myself that you were here. You existed.

I’m so struck by how profoundly you changed me. While I’m so sad and grief-stricken over your death, I’m also so much more happy with myself. I don’t waste time wallowing in self pity anymore. I give everything my 100 percent. More than anything, I fully realize that I am good enough. You freed me in many ways. Although, I would have rather learned these lessons with you by my side and here still.

I’m content where I am, no matter where that is. I’m not always seeking, seeking, seeking. I’m living. Sometimes I just stop and breath, knowing the fact that I’m breathing is wondrous.

Bad days still happen. Sometimes my mind takes off in directions I can barely control. A few days ago, I had a severe gall bladder attack and went to the emergency room to make sure it wasn’t infected and for pain control. I told daddy not to bother coming in since we knew exactly what was wrong. I relived that night with you. I was there for a while because I was in so much pain. Daddy came in many hours later. I asked why, and he said he was worried. I could tell he too must have relived that night.

As I sat in that little room, I began to tear up. I’m at an odd stage. While once the tears came often, now I rarely cry. I know I’ll cry again and this is just a dry season of sorts. I know it’s okay to cry and okay not to cry.

My grief and pain are the only tangible thing I have left of you. Well, that’s not true, I have one other thing, my love and hope. I turn to that more and more now. Part of me is afraid to give up my sadness because it’s one of my only links to you. I’m working on strengthening my other bond, working for you and spreading the love and compassion you brought into my life. It’s how I can still be connected to you. It’s how I parent you always. In that way, you’ll never, ever die. Even after I’m gone, I hope the work I do for you lives on forever. I think it will.

I know that the love I feel for you doesn’t just leave suddenly. From you, I learned that love isn’t something we close off in our hearts and minds. It’s something we throw out and that’s felt in the air and in all we do. It stays. It’s active. It’s more than an emotion or feeling. It’s an active force. I have no doubt of that.  I think hate is the same way. Anger is an emotion, and I think something that can be snuffed out, but hatred is like love and will multiply. For that reason, I make it a point to never release hatred. It doesn’t leave either, instead it festers and bounces off other people.

I don’t know if I would have believed that before you. You proved it for me.

Your love will never, ever die.

Love,
Mom

I’ve Got a Case of the Punchies

The grief anger is unlike anything I can describe. It comes on with a force. It turns me into a force. A whirlwind of emotion.

You’ve probably noticed. As my good friend, and Aussie sister of my heart, Sarah wrote to me, my writing becomes punchier. She meant it as a compliment. I’m a person always willing to compromise and think about what someone else is going through. Rarely do I stand up and say this is what I need now and there’s no compromising about it. When I get in the angry moods, I do. I’m glad I’ve written my punchy posts.

However, those moods aren’t best to be worked out through social media where communications can easily stray.

Just so happens next week I’m having a minor surgery. (Gallbladder, and now that I think of it how removing an organ might be routine, but it’s still sorta creepy and seems not so minor). So expect my presence to be less for a week or so starting late next week.

I’ll be back, probably less punchy, but maybe even more punchy, and ready to work again.

Earlier today, I figured out Queen and Kristine rhymed. I’ve insisted Ben call me Queen Kristine ever since. Trust me, you’re glad that I’m taking a break while I work through this grief angry diva phase. As for Ben, he can’t take breaks, because I’m totally getting a bell after surgery and ringing it every time I want my pillows fluffed.

I don’t even know if I’ve mentioned it here because I’ve been so busy, but have you seen this site for pulse ox advocacy? Awesome work is happening on that front, by probably hundreds and hundreds of people at this point. 

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).

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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