Friday, November 16, 2012

Sleep Revisted

Again, I wish I were asleep. But, I can't sleep. It's just not possible. My mind is racing with a thousand thoughts and nothing from moment to moment.

I wish Bea were at home, sleeping in our bed, nestled between me and Chris like she's been doing for months. She doesn't go to sleep that way. She goes to sleep in Lewis' bunk. Then in the middle of the night she wakes up and wants company. When she could walk she would enter our room on her own and climb into bed. When she could no longer do so she would call my name... mom. I would walk over to her, carry her into the room and tuck her in.

I'll never hear that again. Not from Bea. Not ever. Her weight is something I will not have to carry anymore, not that I ever complained. It was never a burden.

Bea will be moved to hospice today, at Scottish Rite. The doctors have done all they can for her. She will not awake. She will not speak. Her little body will not survive her cancer.

She has maybe a few days or possibly a week left. It is hard to tell. But, she is on her way and there is no stopping it. No amount of tears or blogging or making art or anything can stop it. It is happening.

I don't know if I'll post again or what I will have to say next. Again, I'm entering a world that I don't want to belong to. Gaining experiences that nobody wants. It is a living hell. There's no more apt symbol than that wretched place.


  1. Helen, I know that I don't have any words to ease what you, Chris and Lewis are going through right now. Please know that our family is lifting up yours in our prayers and closest thoughts. We all love your sweet girl, especially Mariana. May every peace be with her on this journey. And, may the strength of grace sustain you all, as well.

    With love,
    The Mellen Family

  2. I am a stranger who has been reading your blog and I just want to say how terribly sad I am and how very sorry I am, although I know no words can do anything to help or heal. May you all be surrounded with love during this time. Please know a family you have never met is thinking of you in Atlanta.

  3. I, too, am a Mom you've never met, that has no words, because no words exist to make this better or right. I simply want you to know your sweet Bea has made her way into the hearts of those you've never met. And I believe that's how we live on. I hope your memories bring you peace at this time.

  4. I have been following your story through your sister in law and blog. My heart is aching for you and your family. There really are no words that feel right but please know our prayers are with you always. I agree with the above post - Bea has made a great impact on a lot of peoples lives! She is a beautiful little girl. May God comfort you.

  5. Oh Helen - there are no words. You are constantly in my thoughts and prayers. Bea is so special and we are lifting you up constantly. Please let us know if there is anything you need.

  6. I am a father of two and while we do not know each other I cannot help but feel your pain and anguish. I pray that God may lessen the pain of your loss and leave you with only the cherished memories of Bea.

  7. I have many friends that know you and your sweet Bea. You are not alone in this. Unfortunately, there are so many moms, like me, that have walked in the valley of the shadow of death with their children. Fear not, God is ever present. When you feel like God is not there, he really is... he's carrying you through the tough times.

  8. Helen-

    Words cannot express the heartache and sadness I felt upon hearing about Bea. While we've never met, I learned of Bea's battle through your sister in law, Jen. I've been praying for Bea and your family since Jen shared her diagnosis back in January. We had two local families with the same diagnosis. Nothing can prepare you for this battle.

    I've seen you as an incredible advocate for your daughter through your blog. If having her at home is your wish, don't hesitate to insist on it. Bea made an incredible, life long impact in many lives. It is evident in her art and her spunk shines through her eyes, they sparkle.

    I will continue to lift up your family & Bea in prayers of miraculous healing, peace and comfort during this incredibly difficult time.


  9. My boys and I pray for you every day and night. My heart is breaking for you and I pray that you are surrounded by a perfect peace. Dearest Bea, you are such a brave've touched lives in ways you probably never would have dreamed. Thank you for being such a strong, beautiful girl. Much love to you and your family.

  10. My heart is breaking for you and your family. I have been following your blog for some time and am the proud owner of Bea's rainbow drawing. It reminds me of her fight (and my previous fight with cancer) every single day. Sending light and love to you and your family during this difficult time.

  11. Oh, my heart is literally aching, Helen. I was walking in Ikea when I heard the news and thought to myself, there's something terribly wrong with this world. I broke down. My many tears and deep sorrow are for you and your family. Even though I've only met you once, there's a empathy I just can't explain. I don't know what it's like to walk in your shoes, but I do know the heart-wrenching pain and deep sorrow. Your family is so deep in my thoughts and I wish I could do more other than just pray for peace to come. Hold on to one another and comfort each other during this time. Much love to you all. Mika

  12. Helen, I'm not really sure why I told you I was walking in Ikea other than the feeling I had while in there. It was an eerie feeling of normal people walking through a normal day going through life and your world has literally stopped. I assure you that it will not stop forever. It's hard to know when healing will come for your family, but it will. It would drive me crazy when people would tell me that in the beginning of my experience, but I'm walking testimony that it's true. It does come. :)

  13. I am a friend and co-worker of Chris and have been following your blog since the beginning. I am truly heartbroken for you and cannot imagine your pain. Bea is a beautiful girl and her she has inspired so many. For me and my family her story has reminded us never to take for granted the health of our loved ones and to be thankful for every moment we get to spend together. We will be praying for Bea and your whole family to find peace and comfort.

  14. I am another who you have never met. My heart aches for you and for your sweet girl. I am wishing for peace for you.

  15. Grief can smash you down like a tsunami but life will come back afterward. I send you my love and condolences that you find any comfort you can in this time of suffering. I always like the non-denominational poem by Clarissa Pinkola-Estés

    A Prayer

    Refuse to fall down
    If you cannot refuse to fall down,
    refuse to stay down.
    If you cannot refuse to stay down,
    lift your heart toward heaven,
    and like a hungry beggar,
    ask that it be filled.
    You may be pushed down.
    You may be kept from rising.
    But no one can keep you from lifting your heart
    toward heaven
    only you.
    It is in the middle of misery
    that so much becomes clear.
    The one who says nothing good
    came of this,
    is not yet listening.

    ― Clarissa Pinkola Estés, The Faithful Gardener: A Wise Tale About That Which Can Never Die

  16. You have my deepest sympathy, and my wishes of peace and ease for little Bea.

  17. Helen,
    I am so sorry that you and your family are having to suffer through such a difficult time. As one of your daughter's teachers at Kincaid I have been blessed to witness the pure joy that is Bea. Her smile lights up an entire class room. She has brought out the best in all of us and touched so many hearts. We are all better people for having known her. Thank you for sharing her with me, even if only for a short time.

  18. Helen,
    Your blog about this experience with Bea has touched me in so many ways and my heart aches for you and your family. Hayden and I have prayed for your family when this challenging journey started for Bea in January in Ms. Monroe's class. Bea has impacted our lives with her joy, bravery, friendship in ways that we will never forget and take with us always. I wish you never would have had to go through this, but how you have shared this has touched so many lives. I hope you find comfort and peace to know that Bea with her short time with us, has made such a positive and inspirational impact on the lives she has touched. This is a poem that brought some comfort to me and I wanted to share it with you.

    I am standing on the seashore. A Ship spreads her white sails to the morning breeze and starts for the ocean. She is an object of beauty and I stand watching her 'til at last she fades on the horizon, and someone at my side says "She is gone." Gone where? gone from my sight, that is all.

    She is just as large in the masts, hull and spurs as she was when I saw her, and just as able to bear her load of living freight to its destination. The diminished size, the total loss of sight is in me, not in her.

    And just at the moment, when someone at my side says "She is gone," there are others who are watching her coming, and the other voices take up the glad shout-" Here she comes."

    Carey Krueger and family

  19. I know no platitude can ease the pain you and you family are going through, so I won't even try. I just want to thank you for sharing your journey with Bea with all of us and let you know you are well cared for.


  20. ... and LOVE, well LOVE, that is the greatest gift of all.
    Dear Helen:
    The LOVE you are showing Beatrice is an everlasting love which has been hers since her beginning and sustains her now. The enormous LOVE in her
    Christmas room can be felt by everyone who enters it.
    You and Chris and of course Lewis are the reason for that LOVE.
    Family, friends, collegues, young and old,and strangers
    have also show what LOVE is ...
    Their kind deeds, thoughtful gestures, and prayers have made it so very clear that LOVE has no bounds for Beatrice, you, Chris and Lewis, and covers you globally via sunshine during each day and bright stars at night.
    Know that by writing your thoughts and feelings you have given us permission to be part of Bea's journey of life for the last eleven months.
    Thank you for that and so much more.
    God Bless!
    mom and
    grandmom from Philadelphia

  21. I think of Bea often, and I miss our brief journey down the Yellow Brick Road.

    Greg Nixon

  22. If you have not already, please visit the Brain Tumor Foundation for Children.


Note: Only a member of this blog may post a comment.