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, December 3, 2009

Seven Questions

These seven questions were originally posted over at the Miscarriage, Stillbirth, Infant loss Blog in July 2007. Since then, a number of other bloggers have tackled these questions with an open honesty that hopefully places a foundation for healing. It has been very enlightening for me to read their thoughts within this Meme. Their answers can be found at In the Land of Broken Hearts, Living in the rainbow (First & Second posts), and Spacebook

Without further ado.... 

1. What do you want people to know about the child you have lost?

She was perfect! While her life was dominated by management of her Alagille Syndrome, it did not and should not define who she was. At times it is easy to forget this (even I do), but I have to remind myself that Olivia never knew that she was sick. She just knew herself as a 'normal' baby. She lived in the moment - reminding us that living is what's important. 

2. What names did you give (or plan to give) your children and why?

As we were pacing the hospital halls during Sara's early contractions, we both realized it was time to make some final name choices. Not knowing the sex of our child we had to come up with names for boys and girls. Fairly early on we had decided on Liam as our #1 Boy name, while a girl's name remained elusive. Isabelle, Isabella, Elisabeth, Margaret, Anne, on and on without a consensus. Ones I liked, Sara was lukewarm to, and vice versa. About 36 hours before our baby was born Sara asked if I liked Olivia. There it was, that was right: Olivia. Her middle name Anne followed very quickly, fitting in well with mothers/grandmothers on both sides of our family. Little did we know at the time how big an impact those two words would have: Olivia Anne

3. What rituals or ways of memorializing your children seem to best help you cope with their loss?

Early on after losing Olivia we were able to channel our grief and other's generosity into donating to the Alagille Syndrome Alliance in her memory. This worked both as an initial focal point for others, but also will hopefully provide a longer lasting tribute by helping other families affected by Alagille syndrome. We have created a couple of in home 'memorials' to Olivia, which I might post pictures of at some point. 
On top of our entertainment center, there is a clay sculpture of a mother holding her child which we found in a small art gallery in Jerome, Arizona - an old mining town now converted to a tourist attraction. The views from this mining town are spectacular and gave us some joy during our darkest days. Flanking this sculpture are two pictures of Olivia; on the right her birth announcement and on the left a picture taken about two days before she died.
We also have Olivia's ashes as the focal point to the other memorial we have in our home. Her ashes are in a beautifully hand crafted copper urn enameled with blue, green, and aqua tones. Surrounding the urn are three ceramic angels welcoming one of their own. A carved frog engraved with dragonflies, a collage of pictures stands to the right, with a Welsh Dragon protecting the lot.
We also buried a small urn of her ashes in a memorial park to publicly remember her passing. We actually have an appointment today to select a marker for the site. We visit her 'grave' regularly, which has collected a number trinkets and flowers helping us remember her life on earth.

4. What are the kindest and/or most helpful things people have said to you? What are the worst?

I'll start with the worst:
At Olivia's Memorial Service, a couple rows back an older gentleman turns to his neighbor and says "She's young, she can have more children." I wanted to reach back, grab him by his collar and scream "We might be lucky enough to have more children, but we'll never get Olivia back!" Of course it was well intentioned, but not sensitive at all. 

The comment or conversation that has hurt me the most actually occurred with a family member one month after Olivia passed away. I was venting to him about how hard it was for me to see baby pictures on other's facebook pages so soon after losing Olivia and how I'd have to hide some messages so I could control what I see and when. The response I got blew me away ... 'life goes on everywhere... so you need to deal with it.'  I don't think I'll ever be able to forget or forgive that comment. That's what drove home that sadly "You don't get it, until you get it."

"She's in a better place." is another comment that hurts. She was meant to be with us, we were chosen, she's supposed to be with us. Yes, I guess those of stronger faith than I can accept that platitude, not I.

We also got a bizarre letter from a Jehova's Witness in the mail after Olivia's Obituary was in the paper. It talked about the end of days, how we must all repent now, how things like this were all brought about by a sinful word. It was such a bizarre letter that it became comical even at this sad time.

The kindest & most comforting comments have actually come from a variety of sources:

Cards from strangers who don't know us, comments left on Olivia's Blog or the sorrow behind a friend's eyes as they give you a hug. My favorite written comment has to be "Olivia did not know how short her life was. That is your burden to bear." When I read that comment on Olivia's blog, it was the first time I felt 'at peace' after her death. 

5. Who is your hero? Who helps you make it through the dark days better than anyone else on the planet?

My wife, Sara. The grace and courage she has shown over the last year has been truly breathtaking. Throughout everything, her pregnancy, Olivia's birth, Olivia's Hospitalizations, Olivia's Death she has persevered. While I lost "My little Peanut," My daughter, a piece of my heart, Sara lost a physical part of herself. Olivia was an extension of her for 38 weeks, fed, nurtured, and kept safe from the world. I have no idea how she has managed to keep herself together like she has. This inner strength is something I strive for daily.

6. Is there anything you need to say or want to say but haven't been able to? Can you say it now?

Olivia, I'm sorry. Sorry I would get frustrated with you, Sorry I spent time doing other things while I could have played with you, Sorry I wasn't with you when your body was too tired to continue to fight, Sorry I've lost faith.

7. How are you doing? How are you really doing?

Good & Bad. Good in that I can get up everyday and make it through another work day. Bad in that putting on a positive front is both physically and emotionally draining. After spending all day helping clients with their animals, I'm ready to go home and collapse. Yes I feel better than 3 months ago, but the approaching Holiday season has seemed to set be back quite a bit recently. The happy carefree people I see around me make me more and more bitter... but I guess life goes on everywhere right?


  1. Ben, I want you to know that I truly appreciate your perspective on grief and the pain you're facing in the wake of Olivia's death. As a mother, I relate so well to the comment you made about Olivia being an extension of Sara. We women carried, nurtured and protected our children within our bodies. I felt every move, roll, kick and hiccup while my twins were inside me. Although my husband seldom expresses his grief (and oh how I wish he would), I see evidence of it everyday in the way he carries himself, the lack of joy in his eyes and his quick temper. Hearing about loss from the male perspective is helping me understand a little of what my own husband is dealing with and I want you to know how much it means to me to have you blogging and sharing about life and love with your little girl. Although I too hate many of the platitudes we've been offered since Calvin's death (my most hated is, well at least you still have his twin), some of them are comforting when coming from people who have also walked this road of grief and who truly know what it means to lose a child. My heart goes out to you and Sara as you face your first Christmas without Olivia, and I hope that you both can find a measure of comfort in your love for each other. Many hugs to you both.

  2. Ben

    Well, thank you for carrying on the meme. What appealled to me about these questions early on were that they were the kind of questions I wished people in the "real world" would ask but rarely did. They were things I wanted to be able to think about and express but rarely had licence to do that. Anyway thank you for sharing.

    It struck me that all the hurtful things people said had an element of truth but completely missed the point. It may be true that your wife is young and can have more children but so what - you could have a 1000 and you still miss Olivia. The hurtful comments also have in common that they are trying to make the person saying them feel slightly less raw about your loss by (and this is the hurtful thing) making your loss slightly less significant. In other words they belittle your loss and in so doing belittle themselves as they show they do not have a correct value for human life. Olivia was a precious girl, daughter, life - nothing could compensate for not having her here. To suggest otherwise is at best emotionally shallow and at worst erodes the very foundation of life and human dignity. Rant over.

    Whilst I have kept my faith (or my faith kept me - search for rope poem on my site if interested) following the loss of Abigail, I too have an alergic reaction to the religious platitudes offered. God did not need another angel and take my baby. My daughter was not too good for this earth. And whilst I do believe heaven is a better place, death is always evil and never God's will. My faith is a bit battered and frayed around the edges. But personally I believe God grieves for Abigail too and that she is in heaven and that does bring me some comfort. It is completely wrong to try and ram your faith down someones throat when they are vulnerable likes the JW's did.

    Some of the ways you are remembering Olivia seem amazing and I would love to hear/see more of them in a future post.

    I hope the holiday season is gentle on you

  3. time does keep going on, holidays and other people joy burn to the core..


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