New neighbor

Drew's stone was set beside John's (properly) and I was elated. We planted daffodil bulbs all around for springtime and landscaped with fall mums and scarecrows. All looked as adorable as could be in Dead Baby Mama World, where you landscape around granite instead of fill sippy cups.

Because I work from home two days a week, I'll often swing by the cemetery for a "drive by" in the mornings. Last week there was a new neighbor right in front of our two cemetery plots - a fresh grave.

I'm a bit ashamed to admit this, but I was distraught. I'd just gotten the grave to how I wanted it. The stones were in place and I'd gotten to plant flowers - and I didn't want anything to disrupt the little bit of peace that came with that - not even a very nice dead old lady.

It reminds me that so much of my grief is still far out of my control and that I am capable of feeling the weirdest forms and wisps of sadness spurred from all sorts of weird circumstances.

I also feel the gravity of things harder than ever before. This old lady is now my eternal neighbor. Someday in the (hopefully) distant future, when I am cremated and added to the family vault, it will be behind Mary Lu.

How about that?

?

"ohn and 'dew"

I wear my necklace with my children's names on it everywhere I go. I have a charm for each child and each charm has their name and their spirit animal on it. John's has a footprint.

Anyway, I don't think there is a day in Clark's life that he hasn't seen me with that necklace. I never take it off. The other night he was standing on my bed and put his little arms around my neck to hug me. Then he had this very serious look on his face and he was looking at my necklace. So I showed him "Emily" "John" "Drew" and "Clark" on each charm.

"Emmy!"
"Ohn!"
"Dew!"
"Aark!"

And then he said it all again, going through all the charms.

I can't describe the feeling of hearing my miracle baby say the names of his brothers out loud. It was as if I had never heard their names before. Like a song sung in a different tune.

I swear, I swear, I swear, I will never let the world forget about my boys. Hearing Clark say their names makes me even more resolved to their memory.

Oh, my heart.

Headstone drama

It's a headstone. Exactly like the other headstone. Why is this so difficult?

We ordered Drew's headstone recently. It is exactly the same as John's. Exactly. Same size, same color. They are buried in the same vault on the same plot in the same cemetery. John's stone is raised instead of sunk into the ground.

The stone was supposed to be here last week, but the monument company called to say 7-10 MORE business days. Then this week, I go out to the cemetery and they dug the spot for Drew's stone.

Two problems with that: They dug the footer BEHIND John's stone instead of beside it.
AND THEY DUG IT, like to sink it down. Not like John's stone.

I am irrationally beyond upset about this. The stone is important. It is forever. It must be right. Now there is some bullshit about how they don't think they can put Drew's stone next to John's stone. I don't want it in the plot next to John's, I just want it physically next to John's stone!

I'm so frustrated. And sad. And mad. I should not have to deal with this because I should not have dead babies. I should not have to deal with this because this is not rocket science. Because I have been clear on my wishes about this. And because it is important.

Ugh!

Off the emotional wagon

I just can’t keep doing this. I just can’t keep being OK all the way up until I’m not OK at all.

I’m not OK, and that’s not OK.

Long story very short:

I got drunk

I cried

I embarrassed myself

I suck

I’m sad

So there are a few things that have to happen here. First, I have to identify what is actually wrong beyond dead babies. Dead babies will always be the thing that’s wrong. End of story. But the emotional stuff that kind of lives around the dead baby emotional stuff is the stuff that is the problem right now. Got it?

That stuff includes:

Forgiveness of my family

Forgiveness of my husband’s family

Forgiveness of myself

Letting go of guilt on SO MANY LEVELS

Being able to be in a room full of people without needing pills or even wine to cope

I was a little stunned to realize that I have not seen a counselor in two years. No talk therapy for TWO YEARS. Stupid deferred emotional maintenance. Keri (my counselor) quit and I just stopped going. So basically, I was diagnosed with PTSD and my response to that was to stop therapy. Not smart.

OK, then.

So back to therapy.

A big question: do I need medication? Inside, I say yes. I need help. This is bad. It can’t keep getting good and bad like this. I’m almost OK with being always sad, but having these very random, very unpredictable emotional breaks is exhausting. Would medication even the ship a little bit? Or capsize the whole thing?

And the forgiveness…well…I’m going to work on it. There are certain emotional cinder blocks that I have to carry with me wherever I go. The boys and the terminations and the sadness – I can’t put that cinder block down. But if I am going to emotionally move forward from the me that I hate so much, I have to be able to forgive people even when they are not sorry. I can’t think of anything harder, to be honest. But I know that I have to do it for me, not necessarily for them.

Forgiving my family for treating my boys as if they didn’t exist is going to nearly kill me. Forgiving my husband’s family for treating my boys like their lives weren’t as important as children who lived is going to kill me.

Not forgiving – or at least not moving on – is killing me.

How much of this is about the boys? How much of it is about thoughtless family members? How much of this is about me?

It’s time to find out. I don’t want to be the girl I hate so much anymore.

Three years later, on my own terms

For nearly three years, a tiny urn sat next to our family picture in the living room. I would often pick it up and hold it in the palm of my hand, and I would remember the day I lost my little Drew. I can close my eyes and remember the absolutely wonderful nurse at the Special Birthing Center - how she asked us if we wanted to see him and we were stunned. It wasn't possible for us to see John and we somehow didn't consider that we would be able to hold Drew. I was so surprised that I almost declined - I had already been through so much.

But that moment when we held him - so, so tiny - was one of the best, most magical moments of my life. A moment of heartbreak and grace. A moment of grief and motherhood. I got to hold my son. It means so much to me, even now.

And maybe that's why I delayed burying Drew's silver urn with John's marble one (I'm beyond pleased that they have such different urns - it's the little things for Dead Baby Mamas). Everyone told me that I should bury John's ashes right away. I might never do it if I don't do it soon, they said. It helps you get on with the healing process, they said. But it felt rushed. I wasn't ready and I was pushed. And maybe "everyone" was right and I just didn't know it.

But Drew was different. I wasn't going to be pushed to it. I kept the urn downstairs in an out-of-the-way place. I kept quiet about it. Then I got pregnant with Clark, and not knowing if he would be healthy or not, we saved our money for medical expenses "just in case." There were no leftover dollars for burial and headstone.

So we waited. And somewhere in those nearly three years, suddenly, it was time - my heart was ready. It was time for Drew to be with John.

So a few weeks ago, we ordered his stone and organized the burial with the cemetery. We got dressed up - just me, my husband and our children, and we talked about Drew and about our love for both boys. I wrapped the urn in a baby blanket with monkeys on it (Drew's spirit animal). And we said goodbye.

I will admit, I nearly chickened out of the entire thing when I saw the cremation vault. I so clearly remember when we buried John, thinking that I would never see that vault again - it was only to be opened after my death to put his urn in my casket. And there I was, and there it was, like a cruel joke. And, beyond all reasoning with the Universe, the name of the company on the side of the vault was the Clark vault company. I can't make this stuff up.

The feeling now is really peace. If this is how my life story is supposed to read, then the boys are supposed to be together. And now they are. I'm very glad we did this on my terms, on my timeline. There is some closure. There is some comfort. This is a reminder of how blessed I am to have their little spirits around me always.

Dropping some knowledge

"From the outside looking in, it's hard to understand. From the inside looking out, it's hard to explain."


Well, isn't that the truth.

I wrote this post twice already, but I just can't quite hit "publish." It was a rant, a vent, and it was potentially hurtful to people who hurt me, but who I still care about an awful lot.

A few months ago I got stuck in a really, really bad place. Coming out of it now, I realize that people have more power over my grief and my life and my PTSD than I ever imagined. That gives them a responsibility to *try* not to harm me emotionally, to *try* not to damage me irreparably with their words and their well-meaning but misguided ways.

But it also gives me the responsibility to drop some knowledge. To share my experiences in a way that will help another person or prevent some of that damage.

My purpose in this now much abbreviated and much more mature and rational blog post is to share a much more concise, much better written blog post than I have the mental organization to write.

http://stillstandingmag.com/2014/06/grief-attacked/

If you're a Baby Loss Mama, share it. I hope that the people around you respect you enough to take the advice to heart.

If you're the friend or family member of a Baby Loss Mama, read it. Take it to heart. Try to understand, know that you can't understand, and then err on the side of supportive. Understand that attacking her grief will cause damage - directly to the person who is grieving and to your relationship with that person. Know that a lot of that damage will not be fixable.

Just trust me on this one, OK?

Three Years Gone

There's no easy way to start this post. I've written four sentences and deleted them. It's always so much easier to write these entries in my head. The minute I sit down to put my thoughts in order, I can't think of a thing to write.

And so it goes.

Today is a death day. One of my hardest three days of the year - the day my grandmother died, two days later when we lost John and in October when we lost Drew. I could write about the stunning pain, the overwhelming grief that is rivaled only by my overwhelming love for my lost boys, and the continued struggle for emotional solid ground.

But I think today I want to write about John. We found out I was pregnant on Halloween. I wish I could say I was the cutesy girl who did something stupid like write "I'm Pregnant!" or "You're going to be a Dad!" on the bottom of my husband's coffee cup. But I wasn't. I was stunned. I barged into the bathroom and threw the pregnancy test at my husband. "TWO LINES!" was all I could say.

"What does that mean?" he asked.

That night we walked around my in-laws' neighborhood with our daughter, holding our secret and smiling at each other. Such happiness.

After a difficult few months with my ex and custody issues with our daughter, I was at our local Chocolate Festival the night before the anatomy scan. I finally felt confident enough to tell a few people that I was pregnant. It felt good to talk about it. How sad to have to tell them all a few days later that John wasn't going to live.

I imagine my sweet oldest son was blonde. A bit stocky like his dad, with a quiet way and natural curiosity. I imagine that he would have idolized his big sister and marveled at our pets. I think of him as even tempered and well behaved, a joy to have around - much like his sister is at every age.

I remember the emotional struggle of carrying John - I was going through a lot and stupidly thought I would have time to bond with my baby - time later when I could focus on him. That's the trouble, right? You always think you have time.

I remember the anatomy scan. The stoic woman who started the exam - the fight with the insurance company to get another more targeted scan. I remember my husband crying, I remember feeling like I couldn't fall apart because he needed me - we were losing his son. I remember driving to my in-laws' house because I didn't know where else to go. I remember reading the signs on the highway and thinking, "Read something. That's how you'll know if this is a nightmare or not. You can't read in your dreams."

But I could read those signs. It wasn't a nightmare. It was the beginning of everything ending.

I remember going in for the surgery. I remember feeling his last kick. I remember thinking that it was his last kick. I remember the nurse closing the curtain and saying to the other nurse, "She's so strong. I don't know anyone with such strength."

A remember waking up in a room full of beds. I was crying. I knew immediately what had happened. I realized immediately that he was gone.

Today we went to the cemetery - just me and my husband. There is an abundance of snow here in Ohio, so we couldn't even get close to John's stone. We held each other and I cried. I told my husband that even though my pain has defined me - and not in all the best ways - I would never wish to take away the experience of John and Drew. They are my sons. The own the core of me. I love them fiercely. I see them everywhere I go. When I falter - as I so often do -  I feel their presence pulling me through the pain.

A death day. Three years gone. Oh, how my heart grieves for my little lost boys. I love you both so much, wherever you are.

Leaning out?

For a long time, almost for as long as I can remember now, I have been “leaning into” my grief.

This was my plan on Day Zero – the day I lost John. The first day of the “new me.” The day I stepped over the invisible line and became this person I don’t recognize. I wasn’t going to be stoic. I decided that the best way to deal with my grief was to deal with it head-on and with my whole heart. To do otherwise would be to deny myself my true feelings and my sons their legacy.

So I went to therapy and I talked about it. And I stayed up and cried about it all night and every morning on the drive to work. And when I meet someone and they ask me “how many children do you have?” my answer is “Two living children.” And I wear my necklace with the charms of all four of my children and I let people ask me about each charm. I explain about Chromosome 22 and 1g to anyone who asks and some poor souls who don’t ask and get to hear about it anyway. I argue with people about genetic testing and early intervention. Once, in a fit of righteous indignation in a Wal-Mart parking lot, I approached someone with a particularly ardent Pro-Life bumper sticker and told them what I thought of people who limit the choices of grieving mothers. And I told them about John and Drew and 1g and mercy and choices and grief.

I “lean in” to my grief because it’s there and it’s real and it feels like something I can hold onto when the world is still spinning and I wish I could get off.

But at some point, the deep, soul-crunching grief became my default. Some people are just happy people, some people are usually sad or bitchy. It’s their point-of-start, and my point-of-start in everything I do is grief.

And I like it that way.

And it has to change.

Last week I experienced the kind of moment every Baby Loss Mama kind of knows (or fears) she is going to experience. It’s the moment you prepare yourself for: when someone says something about your lost child or children or your grief and they aren’t being clueless or simply misunderstanding the depth of the situation.

People – people who I thought understood my grief to at least some degree and people I thought cared about me and my feelings and my boys to at least some degree – said some pretty horrible things. They said things that I can’t imagine anyone saying to a stranger, let alone to a person in my family who I have watched slog through this grief journey.

So there it was, the moment I knew would eventually happen, just happening with the last people in the world I thought would put me in that situation. And what did I do? What was the big response of the girl who would verbally assault someone over a bumper sticker in a Wal-Mart parking lot to defend her choices as a mother and the legacy of her dead sons?

I ran.

I got myself out of there so fast I don’t even remember half of the details.

So my big response was my default: severe grief. I stopped eating. Completely. I had about 150 calories a day from milk and refused to eat any more. I did this for 11 days, hoping the hunger would restore me in my re-broken brokenness. I cried for two days and then every night after my husband fell asleep. I wrapped myself in blankets, hoping the blankets would shield me from the hurt. I reached out to other BLM’s hoping they could give some perspective to the situation. I went to the cemetery and cried because I couldn’t see the headstone because of the fresh snow.

I leaned in, because that is the plan. That is always, always the plan.

Then, somewhere in this starving, freezing, snotty, crying hole of my own creation, I realized that it can’t be my plan anymore. It can’t be my default. Leaning in is hurting me more than it is helping me.

I know I can’t ever let go of my grief. I would never want to. It’s as much a part of me now as my fingers and toes. I’m not looking to put down the heavy cinderblock of sadness. But now I’m starting to think that the next phase of the my grief journey is finding a new default – the new point-of-start for me. I know that, like so much of this journey, I won’t get it right for a really long time – maybe I’ll never get it right. That’s OK. And I’ll deal with my in-laws and their personal affront on my grief in my own way, in my own time. Or maybe I won’t. I don’t have to lean into everything.

In or out

You are either fucking in this grief journey with me or you are fucking out. In or out. That's how it goes. Suck it up or fucking leave.



I could care less.