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.


Friday, November 27, 2009

Happy Thanksgiving?

Yesterday as we sat down to a traditional Turkey Day meal it really hit home; Four chairs at the table, not five (or six). This time last year Sara's pregnancy was just getting to the "reality check" phase, only 3 months to go before our lives changed forever -- little did we know. It was a good holiday, building excitement, lots of food, lots of family, lots of love. Yesterday was a Holiday in name only. No excitement to speak of- only an emptiness - this is not how it was meant to be. The food was bountiful as always but was more a nutrition and tradition bound necessity, not a celebration of what we have. The family was even smaller than anticipated with Sara's Uncle hospitalized for heart troubles. The Love was still there, stronger than ever, but spiced with a sad gravity forged through communal struggles and tragedy. Tearfully, I raised my glass to our Little Love, toasting her memory, willing her spirit to feast with us.

Over the last week many posts, whether on Facebook or in the Blogosphere have focused on a "I am Thankful for X, Y,and Z" meme. I've turned this question over and over in my head for weeks , no actually months, but it's been brought into sharp focus with everyone listing their thanks. My knee-jerk reaction is that I'm not thankful for much right now; The best thing I've ever know has been taken from me forever making me very bitter so you can just F***off !!!
Of course this is not the truth of the matter, it's the pain talking, the constant flow of emotion carving a path through my soul like a never ending river slowly whittling a path through stone. As Bruce Springsteen says in I'm on Fire:
Sometimes it's like someone took a knife baby
Edgy and dull and cut a six-inch valley
Through the middle of my soul
While currently the surface of my emotional river might churn and froth from the sharp rocks and boulders placed in its way, the constant emotional flow from its source slowly in time should smooth the jagged edges of these obstacles making them more comfortable to navigate in future years. This river springs from an eternal hopefulness that everything will work out. While some might ascribe this to faith in a god, at this time I'm not ready to accept that. (I have a whole post planned for Faith at some point... stay tuned).
So with no further delay here is my Modified I'm Thankful for List.
  • I'm thankful we had Olivia home for almost 6 months. I got to hold her, comfort her, have her sleep on my chest, change her diapers, feed her, bathe her, start to show her the world. I'm sorry I never got to see her walk or talk.
  • I'm thankful we got to 'know' Olivia. Her personality, her smile, her laugh/cackle, her temper. All the nurses would say "My she's feisty." I'm sorry I never got to explain to her that the poking that the doctors and nurses were doing was meant to help her.
  • I'm thankful some of my family got to meet and hold Olivia. My Dad and my middle brother (with wife & kids) were able to spend a wonderful weekend with Olivia. I'm sorry that my oldest brother couldn't make it out to meet her with his family.
  • I'm thankful my mother passed away before Olivia was born, watching Olivia be sick and pass away would have broken her heart. I'm sorry my mother never got to meet Olivia, they would have loved each other's company.
  • I'm thankful for everything that Olivia taught us; Strength, Courage, Grace. She made an impact on everyone she met in Real Life or through 'her' blog. I'm sorry that her passing brought heartache to so many people.
  • I'm extremely thankful for my beautiful and wonderful wife Sara. The strength, courage, and grace she has shown from early pregnancy to delivery to Olivia's surgeries to the funeral and burial to her grieving, has reaffirmed her as my soul mate in every way. I love You! Every step of the way we've been there for each other, there is no way I could have survived any of this without her strength. I'm sorry that I can't make the hurt go away, if there were a magic spell, a few words, a deal with the devil, I'd do it to see her soul whole again.
  • I'm extremely thankful for Sara's family, who have taken me in as one of their own from the start of my relationship with Sara, especially Barbara - Sara's mom. Olivia loved Grandma Barb, lighting up every time she saw Grandma. They had a unique bond, they needed each other. Barb was there at Olivia's birth, she was at Olivia's bedside for each surgery & hospitalization, she was the first at our side within minutes of Olivia's departure from this world. Barb, I'm sorry that your heart is broken, I wish I knew how to heal it.
  • I'm thankful for all our friends who have been patient, understanding, and helpful in this time of deep grief. I'm sorry that we aren't the people we used to be and never will be again. Hopefully you will accept us in our new skins.
  • I'm thankful (in a sad way) for all our fellow travelers on this road of grief. Sara and I have made more wonderful acquaintances, through Olivia's struggles with Alagille Syndrome and her subsequent death than we could have ever imagined. Finding people who understand what you're going through and what you're thinking has helped keep us sane. While we are all lonely in our grief and pain in our minds, we need not be alone. I'm sorry (in a happy way) that most of our friends 'just don't get it' and hopefully they never will.


  1. It's sad that your list of gratitude involves so much regret. Of course I don't think there is any one of us who has lost a child that doesn't have more than our share of regrets...So sorry your sweet girl wasn't there to celebrate your Thanksgiving with you. On another note, the fact that your mom died before Olivia to me means that she is caring for Olivia in heaven until you are all reunited. That itself would give me such a feeling of peace...Sending you hugs

  2. Ben,
    As you know my heart aches with yours. You and Sara have been so helpful to me. I don't know how to go on and I don't know what to do with the unwanted freedoms that were thrown back at me. At one point in my life they so great to have and now every one of them is another knife in my heart. Whe people tell me I should be thankful that I was able to spend 5 weeks with her I want to slap them. That's not enough. I know it's more then some get/got but I want more. You are a very strong man, Ben. Thank you for being you... For that I had a reason to be thankful. Maddie

  3. it is so hard to be thankful and to try to resume "normal life"... I found it so incredibly heartbreaking this thanksgiving..watching Ella's cousins and brother running up the stairs and sliding down full of laughter.. I imagined her in the mix of it all.. I spent most of the day fighting back tears, and the rest of it moping in my own grief.. anyhow, thanks for sharing..thinking of you and Sara~


  4. Oh! Ben your words are so insightful .... my heart is never going to heal over losing our precious Olivia. Not only do I so dearly miss her to the point that I could scream each day (and today is one of those bad days)but the injustice of it all is something I can't come to terms with. The pain that you and Sara (my sweet Sara)are going through is at times more than I can bear. You're so right that Olivia and I needed each other ... she truely gave me a rebirth, a purpose and a TRUE joy every time I was fortunate enough to look after her. My life is better having known her, but heartbroken and shattered having lost her. You and Sara are strong and I so admire your courage through this devastating time. Your love and support for each other has shone through during this awful time and words cannot express how I so look up to you both. Even though you probably do not recognize it you both have a strength that is imeasureable. I know that one day you both will heal from the devastating loss of Olivia, but you will never be far away from her, she will always be there tucked in your hearts and will forever be an important part of your lives. I love you both dearly. Mum/Barbara x


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