22 October 2013

The things you aren't supposed to say out loud...

My husband has been writing lately about things that people have said that bug him, and it has me thinking a lot. Of course I’ve written about the top things that should never be said to a grieving parent and the stupid things people say and all the other things that bug me, but the thing that bothers me the most, that hurts the most, is probably the most controversial and misunderstood thing out there that no one wants much to talk about or think about and read about and so, well, let me just say it out loud:

A stillbirth is NOT a miscarriage, and a miscarriage is not a stillbirth.

A stillbirth is NOT a pregnancy loss.

A stillbirth is a dead child.


Now we could turn this into a political argument by left and right-wingers all day long. We could say technically in most states, a stillbirth is a child born twenty weeks or later and a miscarriage is 19 weeks or earlier. We can talk all day long about women’s rights and who’s on first and what’s on second but that’s not at all what this is about.

This is about babies dying and parents grieving, and people who want to compare that grief of a dead child to the grief of a miscarriage—and it is NOT the same.

I’m not saying miscarriages aren’t painful, horrible, undoing griefs. I’m not saying that we don’t grieve when we have them. I’ve had one. I had a miscarriage. I know what it feels like. I know how much it sucks. But no matter how much it sucks, it was not my dead child held in my arms after my stillbirth.

I’m not here to argue that moms and dads who delivered their baby at 16 or 17 weeks and held them in their arms aren’t parents. If you held your baby in your arms and you named your baby, then go ahead and tell me about it and let me grieve with you and let us talk about the child who died. I don’t care about weeks defining a stillbirth versus a miscarriage. And if you have a miscarriage, I will still show compassion and understanding, and I will long with you. I will share your grief. 

But, what I do care about is when someone asks me how old my child was when she died, and when I say “at birth” (because honestly when I say 33 weeks the look is even worse), I get that look of “oh” that look of “loss of potential” that look like “oh, well, at least she wasn’t a child.”

What the fuck? I hate that look and that inference. 

What I care about is when people refer to Grace’s death as a “late miscarriage” or a “miscarriage” or a “loss.” She was none of those things. She was a child that died.

Miscarriage and stillbirth are not the same thing.

I hate it when people post things on my Facebook page about miscarriage or people send me articles about miscarriage implying with that quiet gesture that Grace was a miscarriage, a mistake, somehow avoiding the reality that a child died.

My child was NOT a miscarriage. Got it?

My child was a baby who died for no good reason. Who was the perfect weight and height and size for her 33 weeks (and if you want to be really technical then 32 weeks and 5 or 6 days), who could have survived outside my body had she not stopped breathing inside my body. Why she stopped breathing, I’ll never know.

But I do know that holding her in my arms, her four pounds feeling like 100 pounds was a completely different experience than feeling blood run down my legs, watching my underwear and clothing become soiled, running to the emergency rooms as clots fell out of my body and watching that give way to intense cramping and pain and heartache. But it was different.

And that was a miscarriage NOT my dead child.

And those are two entirely different kinds of grief.

So if you want to sympathize with mothers and fathers who have experienced stillbirth, never refer to their child as a miscarriage. It does a disservice to the grieving parents of both.

Language matters. A great deal.

Even Wikipedia backs me up on this one when defining stillbirth, “…and the word miscarriage is often used incorrectly to describe stillbirths.”

So stop it, okay? It’s not the same.

And to a mother and a father whose experienced one or another or both, it matters. It matters a great deal.

It matters to me.

It matters to my Grace.

It matters.

19 October 2013

This little light of mine...

Sacred Heart Memorial Service, Saturday, October 19th, 2 p.m. 
What I spoke:

If I’m going to be wholly honest, I will say this: none of us wants to be in this room today.

Each of you should be at home, holding your baby, feeding your baby, feeling inextricably overwhelmed by joy instead of grief.

And…we are here.

When your baby dies, your world collapses. I remember. I remember the overwhelming sadness, the inadequacy of the responses from the doctors and nurses. The question ‘why?’ hanging in the room. And the answers always failing in some way.

I wish that I could hand you a formula for healing, a 12-step program, a guide through the overwhelming ebb and flow of emotions, but the truth is that we all fall incredibly short at offering one another solace because we will never truly walk in each other’s shoes. Even the death of my own daughter pales in comparison to your child’s death because your child is your own. And each of us has to own our terrible griefs in our own way. And I recognize how counterintuitive that seems—to in a sense embrace our grief with some kind of energy especially when our energy seems to be failing us.

There is a song from my childhood Sunday school classes that I remember well and it goes something like this:

This little light of mine, I’m gonna let it shine, this little light of mine, I’m gonna let it shine.

Hide it under a bushel, no! I’m gonna let it shine. Hide it under a bushel, no! I’m gonna let it shine.

It is a small light I hold—one that sometimes teeters on the verge of being extinguished, but I have to believe that this little light of mine, this daughter we named Grace, no matter how small a light, still shines inside of me, still guides me through those occasional moments of teetering.

And I have to believe that simply by seeing each one of you here today, you are doing what you need to be doing. Because each of us, having seen our children die has gotten out of bed today, taken a shower, dressed, brushed our teeth and hair, put on shoes and walked out the door and into our cars to drive here.

And however small that might seem, it is some kind of light.

15 October 2013

Infant and Child Death Awareness Life...

Here's the thing. It's October. October is Infant & Child Death Awareness Month. I get it. I get that we need a month. But here's the other thing...My life is Infant and Child Death Awareness Life. There isn't a day when I'm not thinking about it. There are moments certainly, and hours, but even during those times my body is keenly and highly aware. It screams out even though you cannot see it screaming that it is Infant and Child Death Awareness Life! I know it...

These past few years with Facebook so prominent in all of our lives, we tag each other, virtual hugs, virtual memories, virtual reminders that we are not alone. We tag each other in our pictures and in our memories and on each other's pages and it makes me feel like someone, somewhere remembers and that makes me feel so loved.

And yet, this year, this day, this month, I find myself afraid to tag anyone. Why? Because I know too many mamas and papas without. I know too many children who have left this earth too soon. And I am worried I will forget. And forgetting, I also remember, hurts the most from the ones you thought loved you the most.

I do not want to forget anyone's child. I worry all the time about forgetting someone's child, someone's anniversary, someone's birthday, someone's day they found out, someone's day they had hope and then lost their hope, the day they brought their child home from the hospital, the day the knock came on the front door, the day the telephone rang with a different ring than it had ever rung before, the day the tubes were put in, the day the tubes were taken out, the day the crash happened, the day the shot rang out, the day the technician put the gel on the tummy and looked into my eyes and told me, the last day the child crossed the street, the last time he got on a motorcycle, the first day the doctor said "I think something is wrong," the first day the doctor said, "I think she'll be okay," the last day the doctor said, "I'm sorry," the last day they ran out the door together to go to the jewelry shop, the last day she got into the car with her best friend, the last time he was buckled into his car seat with his mom driving the car, the day he forgot to take her out of the car, the day the television fell on her, the day she was shot through the head, the day he was shot in the desert, the last day he got into the car, the last day she got into the car, the last day he came home with his mom and dad from the hospital, the last day....

I am terrified of forgetting each and every day of all of these children's beautiful lives, and still I know there has been a day when I haven't gone online, the day I didn't see someone's page, the day I forgot and for all of those days I am so so sorry. So for today I remember and hold all your children, each and everyone one of them and I hold them all because of my own child and this is in fact perhaps Grace's greatest gift: that I can remain in the company of so many beautiful children gone too soon. And this is never ever gift enough but it is something and it is beautiful and I remember you and him and her and all of them and I will never ever forget.