If you are friends or family of ours, please do not be offended that I didn't share this site with you. You are more than welcome to stay, read and participate, but be aware that somethings said here are not directed at you. While some of the posts and comments might be uncomfortable for you, remember the purpose of this site: It's dealing with My pain and My Grief that you just can't understand until you lose one of your own. I know you want to help ease my pain (and you have in many ways) but there will always be burdens you can't help me with, so I turn to my fellow bereaved.


Thursday, August 16, 2012

If time heals all wounds, I need a refund...... it's not working

It's hard to believe it's already been THREE years since I kissed my Little Peanut goodnight for the last time. The routine nature of Aug 15th, 2009 stands in such stark contrast to the absurdity and surealism of Aug 16th, 2009. How can the world change so quickly? While we slept, the last of our 'innocence' or 'naivete' about the true nature of life was stripped away. This is not to say that we were ignorant of the severity of Olivia's condition, we were fully aware that her life was always more fragile than most, but the suddenness of her departure magnifies the loss - never a true goodbye. The truth that all life must end in death was laid bare in the three hurried strides  I took toward her crib that Sunday morning. I can't even recount the number of times that scene has haunted my mind without anyway to remove it.

I struggle every day with Olivia's absence. There should be two toddlers running around our house. Olivia showing her younger sister how the world is SUPPOSED to be. Instead we have to show Amelia pictures of Olivia and tell her how much her older sister loves her. This constant emotional mix of love tinged with the sorrow of what could should have been creates a dangerous schizophrenic mix. I've gotten much better in the two years since Amelia's birth at compartmentalizing these feelings when needed, though it exacts a long term emotional toll.

There are times I feel emotionally dead, there's nothing left, no pain, no joy, just being, existing, but no feeling. It's as if I've overdrawn my emotional account over the last years and I'm waiting for the next deposit to come in fill the void. (Aside: Please don't take this a cry for help, suicidal feelings, or depression speaking - It's just how it is) I can always count on my family recharging my emotional batteries, nothing will do it faster than Amelia saying "Hi Daddy!" or a Hug from Sara with an "I Love You." Yet still there's a hole in my soul they can never fill, just like I can never fully fix the holes in their lives. I can't replace Sara's special bond to her firstborn. I can also never give back the older sister Amelia so rightly deserves.

In the three years since Olivia died we've had to say goodbye to a number of fellow Alagille Syndrome sufferers. Each new loss hurts on multiple levels. Each death picks at the slowly healing wound- though never whole - bringing Olivia's death back into stark relief. Not only do I grieve for the child, but also for the parents, set on a journey they will never be able to finish. Knowing the heartache they have in store just makes me ache to my core. It's in these times I wish I had the faith that religion provides some people - the faith that it'll be alright. The faith that we'll be reunited someday. The faith that "God" has a plan. I'm jealous of people with such faith, but I just can't find it in me to forgive and forget what was stolen from us. No benevolent God would ever 'take' a child from this earth to 'be with him.' Only a very fucking selfish God would do such a thing.

One little crack in the armor and it all comes pouring out....

I'll end this anniversary post with what still helps me cope the most: Music

Jackson Browne - For A Dancer

Jackson Browne - For A Dancer
I don't know what happens when people die
Can't seem to grasp it as hard as I try
It's like a song I can hear playing right in my ear
That I can't sing
I can't help listening
And I can't help feeling stupid standing 'round
Crying as they ease you down
'Cause I know that you'd rather we were dancing
Dancing our sorrow away
(Right on dancing)
No matter what fate chooses to play
(There's nothing you can do about it anyway)

Just do the steps that you've been shown
By everyone you've ever known
Until the dance becomes your very own
No matter how close to yours
Another's steps have grown
In the end there is one dance you'll do alone

Keane - Stop For A Minute

Keane - Stop For A Minute
Some days, feel my soul has left my body
Feel I'm floating high above me
Like I'm looking down upon me

Start sinking, every time I get to thinking
It's easier to keep on moving
Never stop to let the truth in

Sometimes I feel like it's all been done
Sometimes I feel like I'm the only one
Sometimes I wanna change everything I've ever done
I'm too tired to fight and yet too scared to run

And if I stop for a minute
I think about things I really don't wanna know
And I'm the first to admit it
Without you I'm a liner stranded in an ice floe

Cracker - I Want Everything

Cracker - I Want Everything
I'm standing in your corridor
I wonder what i'm waiting for
The leaves are drifting out to sea
I'm waiting for you desperately

All things beautiful
All things beautiful
I want everything
I want everything

You call us with your silent seas
You call us in our tiny boats
Gather us up with the storm,
And cast us out upon the shore


You're deep inside this fecund swamp
Or let it be your beating heart
You're deep inside this fecund swamp
You call us in our tiny boats



  1. Ben, I've only met you and your wife a couple of times at the SHARE meetings, but I wanted to let you know that I love this post. My husband and I have 2 beautiful sons here on earth with us and 3 beautiful angels in heaven (1 gender unknown, 2 boys) that we lost in a 14 month time span. I especially love the part about religion. I feel the exact same way and you put it into words perfectly. My thoughts are with you, your wife, and your family during Olivia's anniversary and always.

  2. This speaks to my heart as we are approaching the three year anniversary of my firstborn daughter's birth and death in Sept. The part about time healing all wounds (yeah, whatever!) and not finding solace in religion - I can relate to those things.

    Love to you and your family as remember your beautiful Olivia.

  3. Hi Ben,
    I came across your blog recently and I like your viewpoints on loss of a child and moving on. We too lost our child while traveling on an international flight.
    I have written a short memoir "A Child Lost in Flight" about the incident and how my wife and I coped and have tried moving forward.

    I invite you to review the book. The electronic book can be downloaded Free by Amazon Kindle prime members. I can also email you a PDF copy of my book.



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