Capture Your Grief- Day 9: Special Place

Day 9: Special Place

A place that brings you peace...

For me, this is a complicated thing to think about. I guess I have two answers... one is place that no longer exists, and the other is here. My blog and our amazing online community of bereaved mothers.

In the early days of grief I barely slept. I watched a lot of Criminal Minds and spent a lot of time online. The house was quiet and I had too much time on my hands. I was a mother of a nine month old and a two year old, but only had one child to take care of during the day. We were in the beginning stages of Max's autism diagnosis and I was barely hanging on. Reality sucked. Criminal Minds was an excellent distraction but I couldn't just sit and watch TV. My hands needed to be busy. My mind needed to be busy. I could NOT allow my mind to wander. So I spent my time blogging and scouring the internet for some place that could help my make sense of what the hell had just happened.

Ellie got sick on a Sunday. The Friday evening before, I had started my blog. I had originally intended for it to be a place for me to write about the issues we'd had getting pregnant and to network with other families dealing with autism. I NEVER expected that it would become a place for me to work through the unbelievable heartbreak of losing Ellie. My blog became a place for me to sort out all of the craziness that was going on in my head. I was never someone who kept a journal. But now, I can't say enough about how therapeutic it has been to write. Just getting the words out helps clear the fog...
I never thought that other people would be interested in reading what I had to say. In all honesty, I don't write for anyone else. I write for me. And I think it's safe to say that most other moms that blog also do it for themselves. I am so grateful that they do. Because during those early days, when I was sitting on the couch in the middle of the night, crying and looking for someone or something to help me make sense of it- I came across Faces of Loss, Faces of Hope. Hundreds of stories of loss. And a big huge list of blogs. I read, and I read, and I read. And I quickly discovered that even though our stories were all very different, they were very much the same.
I am so grateful for all of the amazing women/ mothers that I've met through blogging. I've even been lucky enough to meet face to face with a few of them. They understand. They don't judge. And I can always count on them. Together, we can remember our children and talk freely about them. Sadly, dead babies are the normal topic of conversation. Most people would be horrified. But for us, it's our reality- our norm. Without this place, those people, I don't know where I would be. This place has provided more peace and sanity than I ever would have expected...


The other place that brings me peace is Ellie's bedroom. The place where I kept her collection of dress and BabyLegs. The place that I had covered in pink- just for her. The place where we rocked her to sleep each night. The place where she had woken up with smiles and happy chatter every single morning.
When Ellie died, her room became a safe place for me. It smelled like her. Her laughter echoed off the walls. Everything was in it's place. I would go in the room, especially at night, and sit in the rocking chair. The glow of the night light, her giraffe in my arms, the creaking of the chair. I could feel her there...
Packing up Ellie's room was one of the hardest things I've had to do since she died. I felt like I was betraying her- erasing her. It was horrible. I took pictures of EVERYTHING. I am so thankful that I did because now that place is gone. And it isn't something we can ever get back...

Capture Your Grief- Day 8

Day 8: Jewelry

Capture Your Grief- Days 6 & 7

Day 6: What NOT to say
Day 7: What TO say


When your child dies, you quickly discovers that you scare people. No one knows what to say to you or more importantly, what NOT to say to you. And it's totally understandable- most days I didn't even know what I wanted to hear. There isn't anything that can change the fact that my baby died. In the very early days, there were no words that could make me feel any better.
Unless you have been in this position, you just don't understand. It's a very lonely place and we are constantly flooded with a wide range of emotions. We are angry, sad and in shock. We are unreasonable and illogical. How could we be reasonable when the most confusing thing ever has just happened to us? Our world has just been turned upside down and we are grasping at anything we can find to right ourselves.
Needless to say- we are fragile. We are overly sensitive and are easily hurt by thoughtless comments. Before our loss, most of us would understand that people are just trying to help. We would remember that our friends and family not only lost someone they love, but are now watching us go through the most painful thing we will ever experience. We would understand that they feel helpless and are also just grasping at anything they can that would lessen the blow for us. We would know that they too are confused and that most people, in their haste to "fix" us, don't understand that we won't ever be "fixed."
But in those early days, we don't remember these things. We don't understand. And honestly, we don't care. Looking back, those early days are foggy and hazy. Thankfully, there are many things I don't remember. But I can remember certain things people said to me because they were either so understanding and thoughtful, or they were just the opposite- completely thoughtless. Words can hurt or help, and I believe that when you are in such a delicate position like having just lost a child, they have an even bigger impact.

So as a little PSA for those fortunate enough to have never been in the position of saying good bye to your child- here are my thoughts on this topic. Of course, everyone is different and finds comfort in different things. This is just how I feel...

What NOT to say to a bereaved mother:

At least she isn't suffering anymore...
Yes you are right. But especially for Ellie, she lived most of her life perfectly healthy and happy- not at all suffering. The last 25 hours were just awful. Of course, I didn't want her to suffer anymore than she already had- I didn't want her to suffer at all- ever! That's why we let them turn off her machines. I'm not just devastated that my daughter died, but I'm mad that it happened in the first place. I'm grieving over the fact that she DID suffer.

She is in a better place...
I never doubted Ellie was in a better place after she died. But it's not like she was in a bad place here. We gave her a good life and loved the crap out of her. This made me especially mad in the very beginning. I would always think, I don't care. I want her with me.

God wanted another angel...
I do not believe that God took my baby. And if so, I don't care what He wanted. I want her here with me.

At least you got nine months with her...
This is true. I am so incredibly thankful that we got nine AMAZING months with Ellie. I am grateful for this every single day. But it wasn't enough. We wanted more. We still want more. Please don't minimize my pain by asking me shift my outlook to a more positive one.

You're so strong...
I'm not. You can't will your heart to stop beating. It just keeps going. I didn't have a choice about any of this- I didn't ask for it and I didn't want it. But we had another child at home that needed a Mommy. I am just doing what I have to. I know people are only trying to be nice and oddly complimentary when they say this. But most days, it doesn't sit well with me. I don't feel strong and most days, don't want that expectation placed on me.

God doesn't give you more than you can handle...
OMG I hate this one. First, I don't think God "did" this to us. Second, to me, this implies that because we're "so strong" (see above) that we deserved this. Like our ability to survive earned us this "opportunity" to show everyone just how much we can endure... GRRR! I hate this one! And BTW, becoming a grieving mother AND special needs mother in the same month= too much!

You'll get through this/ It will get easier...
This is a complicated one... This statement is completely 100% true. But in those early days, you just don't believe it. I thought that there was no way that I could keep on living without Ellie. I can remember telling my mom that she couldn't die. I couldn't survive it. But I did. I am surviving it. It hasn't been easy. Those first few months are too painful to even think about. But it did get easier. There are still bad days or weeks, but its definitely easier... Even though I would probably tell a newly grieving mother that she will survive and it does get easier- I don't think it's anything that she would want to hear. She wouldn't care and she wouldn't believe me...

What TO Say to a bereaved mother:

Your daughter is beautiful...
No mother EVER gets tired of hearing this

Tell me about your daughter...
When your child dies, you just don't lose the physical presence of your child. You lose being able to parent them- at least in the traditional way. When you ask about our children, you give us the opportunity to be that proud Mommy bragging about their child. For people that have had a miscarriage or stillborn, ask about their pregnancy, when they found about they were pregnant, the baby's name, etc. We all like to talk about our kids, just like any other parent.

Saw [this], heard [this], etc. and it reminded me of your daughter...
I love it when people tell me that something reminded them of Ellie. When Ellie died, my biggest fear was that people were going to forget about her. She was only here for nine months after all... By telling me that something reminded you of Ellie, I know that she isn't forgotten.

I'm sorry...
I still don't really know what to say when some one says this to me, but I think it is about the only safe thing that you can say to someone who has lost a baby. Just leave it at "I'm sorry"... don't feel like you have to follow it up with a lot of words, especially if you don't know what to say.

Nothing...
If all else fails and you don't trust yourself to open your mouth, just sit there with them. In those early days of grief, everything is exhausting. Carrying on a conversation is even tiring. Sometimes we just want someone to sit with us so we aren't alone. We are perfectly ok with the silence or just watching TV with someone.
This also means listen. Sometimes we don't want to talk, but other times we do. Sometimes we NEED to talk. We need to hear ourselves say certain words. It helps us accept what has happened and process it all. Even if you've heard the same thing over and over, please just listen. By letting us talk, you are helping more than you can imagine.

Capture Your Grief- Day 5: Memorial

Day 5: Memorial

When you find out your pregnant, the last thing you worry about is finding the perfect spot to bury your child. "What to Expect When You're Expecting" doesn't exactly cover this...

My memory from the night Ellie died is rather fuzzy- same with the days following. But I can remember asking the nurse, "now what?" I was 27 years old. I didn't know anything about picking out a funeral home or cemetery. Picking out a headstone for my nine month old was furthest thing from my mind when I woke up that morning. But there we were.

Thankfully our parents stepped in and helped with the funeral home. To be honest, I have no idea how the funeral home we used was chosen. No clue... But I can remember by Dad telling us that we needed to be the ones to pick out the cemetery. They would come with us if we wanted, but it was really something we needed to do. He was right.

There aren't a lot of nice cemeteries in our area. We didn't want an old run down one or a place on the side of the road. We wanted it to be pretty and peaceful. Somewhere suitable for a baby. Years ago, I had visited one with my friend to find the resting spot of someone we knew. I remember being there, all those years ago, and thinking that it was a really beautiful place. So we went there first. We got there and discovered it was a memorial garden. They didn't allow monument type headstones. Thinking that this is what Ellie had to have, we said no and drove to several others. None were right.

So the next day, we returned to where we had started. Even though the wind was blowing and the rain was pouring down, we could see that this was the right place. Big green hills, old trees and quiet. You can hear the noise of everyone going about their lives off in the distance, but there, it's peaceful. We picked a spot between three gigantic pine trees near the top of the hill. Its beautiful.

We buried Ellie right before winter. The cemetery wouldn't be placing any headstones until the ground thawed so we decided to wait to design her headstone for a few months. To be honest, I knew Ellie deserved a beautiful memorial, but I could have avoided getting a real headstone for much longer. I liked the temporary one. Somehow in my mind, maybe it just made everything a little more temporary...

Ellie's headstone was finally placed mid summer. The cemetery had warned me that it was there so that it didn't shock me during one of my visits. I knew it was coming- we had finalized the mock-up and I even had brought a card and picture from Max to the cemetery for them to bury under the headstone a few weeks before. But nothing, NOTHING, can prepare you for seeing your baby's name written in stone.

That was it. It was official. It was permanent. The last decision we would ever make for our daughter was over.

It took a few times of seeing it and letting the shock wear off before I could really appreciate the beauty of Ellie's headstone. I love being able to see her sweet smile when we are out there visiting her. We wanted strangers that saw Ellie's stone to get a sense of our girl- our fun, sweet, beautiful girl. And I think they do...

Capture Your Grief- Day Four: Treasured Item

Day Four: My Most Treasured Item

When you wake up one morning without your baby, what you value changes drastically. Very few of Ellie's possessions have been thrown away. Ellie isn't here anymore and all I have to hang onto are her things.
The last cup that she drank out of sat on my nightstand for months. I couldn't touch it. I could see her sticky Tylenol lip prints on the top. I was eventually able to put it in a baggie and its in her closet- tucked safely away in a fire safe box.
I know what barrette she wore last. I know what pjs she wore last. They are all locked up too.

Sounds crazy right?

I don't care.

They are the only pieces I have of her. If our house burns down- thats it. Its all gone.

That being said, the things that remind me of Ellie the most and bring me the most comfort are not locked. They are where I can see and touch them everyday. They used to smell like her. I lost it when I realized that her blanket and giraffe no longer held that sweet smell of hers.

I also treasure her night light. I remember being excited to pick out something so girls and I loved how it made her room glow at night..

Pictures preserve their beautiful faces. Videos save their sweet voices. But there is no way to keep their smell with us. When our babies leave us, its only a matter of time before their smell goes too...

Ellie's giraffe used to sleep in her crib with her and when we would go get her from her crib, she would be wrapped around it. I can just see her- legs and arms wrapped around the giraffe, chewing on it. And as soon as she heard us, she would give us a smile and start chatting.
At first, we wouldn't let anyone touch her giraffe. I was terrified of their scent rubbing off on it. It stayed in her crib. A couple months after Ellie died, Dave could no longer smell her on it. It wasn't until about a year ago that I wasn't able to find her scent.
Now giraffe sits on the nightstand in my Ellie's Light office/ guest room. Sometimes I still go in there and try to find her smell...

I love her giraffe because it slept with her every night. But what really means the most to me, are the videos we have of her... I have a really hard time watching them right now. But there are times when I feel Ellie is so far away and I feel like I'm having a hard time remembering her. And in those moments, I am so incredibly thankful that we live in the age of technology. I am so happy we have so many videos of Ellie just being Ellie.