Samsmom: Life, Joy, Loss and Loving your Mitochondria

Full Heart

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Hschichie

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Since Samantha’s diagnosis, I have dreaded the thought of last week.


I knew this day would come. I was pretty sure I would out-live my daughter given her bleak prognosis and I was terrified as to how I would react.

Would I be able to get out of bed?

Would I be able to brush my teeth?

Hold a conversation without sobbing?

Would I hate the world?

Would I hate God?

Would I hate myself?

Would I hate my life?

We are one week into a very long, life changing, sad process and I don’t know how I’ll be tomorrow, or in the next hour, or family holidays. I know times will be hard and times will be sad.

And unfortunately, I found My Grief in the living room this morning; he had tracked his dirty footprints throughout the house and pee’d on the couch. He followed me around, drank my last bit of coffee and stole the Sunday comics.

Bastard.

BUT I have found that I am able to get out of bed and brush my teeth.

This morning Hubby and I laid in bed and talked about the beautiful memorial service, the wonderful people who came to honor Samantha and the glory of the day.

We even laughed.

We laughed

And it is because of the beautiful village that gathered for us and our Lil’ Miss….the wonderful service…..the great music, my hubby’s story, an amazing video, beautiful flowers, the power of a cell phone call, and the glory of all of you….300+ people who gathered to celebrate my child’s short life. And the sweet, sweet thoughts of those who could not make it.

Thank you.

The picnic was amazing….so many people, so much laughter, a run through the splash park getting soaked in our Sunday Best and the grand finale….a short visit by the police……..

Just to make things exciting.

I am still breathing. I am still walking. And because of you all, I am still smiling and laughing.

She is always on our minds and we miss her, but you all have cradled us in your spirit, carried us along, loved us and shared in your own tears and your own joy for our daughter.

I could not do this without you. Thank you for being there for me and my family.




13 responses to “Full Heart”

  1. Melissa Taylor Avatar
    Melissa Taylor

    Heather and Bart, I've been sending you my prayers and hugs!! Love,Melissa

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  2. Deana Avatar
    Deana

    You are my inspiration Heather…before Sam's passing, before her memorial yesterday, you have inspired me in so many ways to choose joy, in the most difficult times. I do hope for your peace in the days to come…and more laughter. And if grief has to come, at least maybe he can clean up after his mess. Love you!

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  3. KatieK Avatar
    KatieK

    Heather–I just have to say, your words take my breath away! Your ability to put your most intimate thoughts and feelings into “word” is a gift few are given. Thank you for being so “real” with us and sharing your heart with us along the way. My heart aches for you and Bart as you travel this road that no one should have to journey on. But you have handled it always with grace…something I'm sure most would be hard-pressed to do. You really are an inspiration to so many (me included!)…don't EVER forget that. And, you can tell that to “grief” when he comes knockin'. Love to you & Bart.Katie

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  4. Woodswomanabroad Avatar
    Woodswomanabroad

    Dear Heather and Bart: Samantha's service was the most beautiful of any I have ever attended. Bart, your courage was amazing, standing in front of all of us and reading your bedtime story for Sam, reading it to all of us, with that “something” in your eye occasionally.May you continue to get up, brush your teeth, and return to our group to write about your beautiful daughter and what she brought everyone in her world.My thoughts are with you, and Sam's smiling photo is on my desk as I write.Joannah

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  5. Anonymous Avatar
    Anonymous

    Heather, I am not sure if you remember me or not. I am so very sorry to hear about Samantha. My heart breaks over and over for you as you begin this journey. If you ever need anything, even somebody to yell at (believe I get it) please let me know….Melissa Dillon (Wyatt Cade Dillon's Mommy 10/16/2002-1/21/2006) melissadillon@aol.com

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  6. Anonymous Avatar
    Anonymous

    Dear, dear Heather. You wondered last week–what will I write about now. I've lost my muse, you said. I don't think so. Samantha's memory is hovering, encouraging you to pursue your most remarkable talent to help all of us deal with our grief. Your ability to weave magic into ordinary words is inspiring and oh so healing. Writing is your gift but we get to unwrap the package. Thank you for continuing to make me cry and laugh and heal. I love you. Cynde

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  7. Leightongirl Avatar
    Leightongirl

    So sorry for your loss.

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  8. ferfischer Avatar
    ferfischer

    Grief is such an awful houseguest! Your post on hopeful parents such a long time ago about grief – I love it. It's so true. Sometimes he will fill up your whole house like a fog, and sometimes will just be sitting in the corner, and hopefully sometimes, will stand outside because he can't handle the joy and laughter inside. I know you have a long road ahead of you. Slow and fast all in one. We're here for the long haul, all of us walking a similar road.

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  9. Amanda Avatar
    Amanda

    Weep my friend, weep. Thank you for such a beautiful service.

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  10. breemunger Avatar
    breemunger

    Heather- I keep saying it, but the service was amazing, sweet, sad & funny all rolled into one. I keep smling about Sam calling the Pastor! I told Heidi I would love to do dinner when the time is right for you.

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  11. Amanda T-B Avatar
    Amanda T-B

    Heather,I'd imagined writing a long letter and sending it with Barry and Hannah Joy on Saturday – and I wasn't ready. Your blog today inspires me.It will be a long journey, and I know that you and Bart will not only survive it – but will continue to grow and change and love life. I know this because it is who you are, and it is what Samantha reminded you of on every day of her too-short life. In your letter to Sam, you talked about how she taught you to go slow That slowness will give you the space you need to grieve and return. And your writing will keep you connected with yourself and the “village” that helped you through Sam's life, and will help you through her death. Someday, you and I will have time just the two of us. I don't know when it will be, but I will cherish the anticipation because you are such an extraordinary person that I want more of you than our occasional hugs at “gang” gatherings can satisfy. Til then, my love and blessings come to you daily.Love,Amanda

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  12. karen gerstenberger Avatar
    karen gerstenberger

    Dear Heather,I just read your post on Hopeful Parents, and am here to tell you how deeply sorry I am to learn of Samantha's passing. Reading and learning more about Samantha's life, I see what a gem she was. Thank you for sharing her with us.My thoughts and prayers are with you and your family, friends and community. I have faith that you will find your way through these days. It's nearly three years ago that our Katie passed, and I want to simply say that I am holding HOPE for you.God bless you.

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  13. Cathy Avatar
    Cathy

    Dear Heather,Writing is such good medicine, telling the story now as you move in it, being so present with all of it is the way through. When it's time, go meet Danielle and what she had to say about “The Goddess of Grief” http://whitehottruth.com/white-hot/the-goddess-of-grief-getting-to-the-other-side-and-there-is-always-another-side/Blessings, support… Cathy

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Hello,

I’m Heather

Welcome to Samsmom and over 15 years of stories about love, loss, grief and the process of moving forward. It’s not always pretty here, but it’s honest. I’m a writer, a fund raiser, rare disease advocate, Mom of two Littles who are no longer here, Wife of Hubs, Aunt to the Phews, daughter, friend and unapologetically me.

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