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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

for one and all > Two interesting pieces of information about grieving

I read a couple of things the other day that really struck me. The first was a study using MRI's to look at what happens when babyloss mothers look at pictures of their loss. With most grief, the paths of the brain that light up are memories. New paths are laid down leading to old memories. In the babyloss mothers, what lit up was the old paths of pain. Of physical pain. When thinking of their child and their grief, physical pain was reinforced.

The second piece of info was also about how paths of knowledge get laid down in our heads. I've always said that for me before my daughter died and for most of the non babyloss parents I know, there is no place in their head for the knowledge of the death of a child. They just can't go there. I couldn't either, until it happened. Turns out that is really true. When a person tries to think of something terrible, the path in the brain takes a turn. It avoids the hurt. So, instead of learning about the grief over time, our friends brains get reinforced again and again to avoid the thought.

This is not to excuse the stupid or hurtful people we all know and run across. Plenty of people are nice and supportive, even with the above brain paths. I still thought it was interesting. A reason why people can't empathize until they are forced to be here. To me, it seems like my loss got seared into my head and roads lead there. Right through and onto what ever other thoughts I'm having. But I know it wasn't like that before.

My daughter died in 1991 and I have had decades of thinking and mulling over this stuff. So I don't get as passionate about it. But I don't want any of you all to think I am downplaying your pain or your experiences with hurtful/harmful remarks. Nor am I excusing the insensitive for their lack of compassion.
February 20, 2017 | Unregistered CommenterJill A.
I lost my first cousin, when I was about 13. She lived 36h.
Please, this is not a hamster or dog.
I am an only child, I have only one set of uncles... so she was the closest thing to a little sister I ever got!

It was a really big shock. I still remember her clearly (she had some development problems... and that caused her death.)
For me she is always my little cousin. I never stopped remembering, but the hurt and disappointment soon went away, when my second cousin was born. I was a child! I can see that now!

But it was a hallmark in my life, that shaped my decisions in the future...
I did not prepare my daughter's nursery completely... I had the essencials, but was somewhat afraid of planning too much ahead, because you never know... Do not repeat my aunt's mistake and have clothes for when she would be 2 yrs old.

My daughter survived... she is 12 now!

And then came my son, 10 years later, our little unplanned miracle!
He was a boy! Boys don't die in my family... only the second girls... My aunt (fathers sister), my cousin (2nd granddaughter), her own aunt (another 2nd girl)
Well, they didn't! Before... because he died inside my womb at 34w-1d.

I was not prepared at all! My aunt and uncle came to visit us on the hospital and I could see them relieving their own daughter's demise.
I remembered her, but it was not the same! This was my son now... I knew it could happen, but I did not know really how it would feel!
The pain was surreal... two years past, it is still pain! Not some memories as when you loose a loved one! It is raw pain, that we learn to set aside to live each day, but that splits us apart when it surfaces!

On my grieving path, I thought the solution would be to have another... like when my other cousins were born, they helped me get over Diana's death... But the trip is longer and much harder when its you! My aunt talked to me about how she coped with her loss... and she told me that for them, each baby (I have 3 live cousins) they would have a safety period after birth, and only after that would relax about them.

My daughter was 9 almost 10, when her brother died. Her grief was different than mine. She is less afraid... She is more confident... It was a setback, a delay.. the worst for her must have been dealing with her newly insane nutty parents!. she is still a child! As was I!

I witnessed before I lived it... I can safely assure that it is not the same!
My mother lost a grandchild, but never a child! She caresfor me... she grieved, and she tries to be supportive, but she does not understand!
my aunt lost her own daughter, she understands me!
And now I understand her...
That is the big difference!

Marta
February 21, 2017 | Unregistered CommenterMarta
The losses are not the same at all, are they? You think they are, you think you know about babies dying, and then, as you say, your child dies and it is completely different from any grief that has gone before. Mind, body, heart and soul - completely different.
February 21, 2017 | Unregistered CommenterJill A.
Yes, Jill, they are not.
And as much as we would whish it differently, family and friends may be there for us, but they will never fully understand!
And maybe they will say thevwrong things, at the wrong time... They will pressure us to move on... Because they don't understand, and hopefully they never will! But I think, at heart, they do have goodness in their hearts and they just wish us not to suffer anymore.
February 21, 2017 | Unregistered CommenterMarta
Very interesting Jill, thanks for sharing!
February 21, 2017 | Unregistered CommenterCristiane
Science is so interesting, the brain is so linked to our thoughts and feelings. It is amazing that grief in this sense is literal--when we say other people don't understand, they literally DON'T and CAN'T understand. The fact that we feel pain when we recall our babies' deaths--that is so accurate. It makes a lot of sense. I always described the thoughts and feelings as pain. I wish we could avoid some of these grief pathways too. I wish we could rewire our brains somehow. I actually had that thought yesterday, that we can't change what happened to us and our babies, but maybe we could find a way to wipe our minds of grief, to magically erase it somehow and reprogram our brains to remove the trauma and pain? But I doubt that's possible. And would we even want to? The pain is part of our love, our memories of our children.
February 21, 2017 | Unregistered CommenterNada
Nada, I have thought that, too, about how it might be nice to rewrite the grief or wipe it out. Even to just make it so that it is like our expectations of grief, so that we respond the way our culture thinks we should. The way we respond to other losses. That leads me to the question of why isn't this loss the same? What makes it different? Is it the love, the responsibility, hormones, instinct? I go 'round and 'round. And at the end, the baby is still dead and it still hurts.

Cristiane, I'm glad it interested you, too. I like to try and figure out what has happened to me, what is happening to us.

Marta, I agree with you. Most people are trying to be helpful and supportive and loving. But often they don't understand and we can't be reached.
February 22, 2017 | Unregistered CommenterJill A.
I think that the normal grief is a natural, cultural embebbed process, where we know that death is the end of a life.
There is a natural order of things, and maybe even if it is sudden, unexpected, too early, it is a normal process.
We hang to memories, good (or bad) memories that we have acquired throughout our life, to remember the time past where they were with us.
And apparently, science confirms it.

Baby loss is different because we did not set up memories, but expectations... those are robbed, and we have nothing left!
February 23, 2017 | Unregistered CommenterMarta