Rest in peace Elie Bean

I remember just after Elie was born in the early morning hours on December 28th saying aloud that she was a Wednesday’s child, but not immediately remembering from the rhyme what that was. The attending physician began reciting it as if to also remember …

Monday’s child is fair of face,

Tuesday’s child is full of grace,

Wednesday’s child is full of …

… only to trail off when he got to that point and then muttering that he too couldn’t recall. I suspect it really came to him as it did to me. Wednesday’s child is full of woe. Not being superstitious I remember smiling at the doctor’s sudden forgetfulness.

We received Elie’s diagnosis on Wednesday March 14th, so I guess it was altogether fitting that she chose this morning, Wednesday June 27th to say goodbye to us, taking her last breaths in our arms, a day shy of her 6 month birthday. She was just as beautiful on her last day as she was her first.

We are feeling tired and empty and will miss her dearly for every day of our own lives, but thankful to be surrounded by family and comforted by our friends, colleagues and the many members of our medical team who grew to love her just as much as we did.

For those of you who have been following this blog these many months, it should be known we paid little attention to the poem. Our goal became to keep our baby girl as happy and comfortable as possible despite her uncertain future. There were many hours spent playing, reading, singing, swimming and taking Elie with us on long walks. Balloons and kaleidoscope apps were favorites. Time spent with our families and friends were also special, a trip to Charleston for her Aunt Dana’s wedding particularly memorable.

For all who have kept us in your thoughts, hearts and prayers these many months, thank you.

Rest in peace Elie Bean.


Categories: Uncategorized | 28 Comments

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28 thoughts on “Rest in peace Elie Bean

  1. Jo

    No words I leave here will express the sorrow I feel tonight on hearing about your loss. Although I never got to meet Elie Bean I felt I got to know her through your posts- she was truly a beautiful girl with beautiful parents.There is an old saying that goes:

    ‘Death leaves a heartache no one can heal, love leaves a memory no one can steal.’

    Rest in peace little one

  2. Uncle Matt

    She was just with us for a short time, but the magic in her deep dark eyes drew you close from the first moment. She seemed to know that she only had a moments to share and she used them to touch in places that had never been touched before. I love you, Elie, and will cherish those moments as if they were for a lifetime.

    I felt from the beginning that God gave you to the perfect parents. We can only surmise that there was a greater purpose, and for me, you brought home the true meaning of unconditional love; without expectation or anticipation. Just love for the sake of love. For someone so tiny and frail, you proved to be bigger and stronger than the any of us.

    God bless you, Elie, Mari, and Darin. My heart is with you and Nonnie, Grandpa Keith, and Aunt Dana.

  3. I am so very sorry for your loss. Elie has been on my mind almost all day, since hearing about her return to the PICU. There really is no words to express the sadness that I feel for you all. It hasn’t been all that long ago since I said goodbye to my beautiful angel (only 2 months ago) and hearing about Elie has picked open that wound again. I hope that you find peace and comfort in knowing that she is now free from this disease. I’m here for you if you ever need anything….even if it’s just to talk. Much love and many prayers to help you through this difficult time.

  4. Cousin Mandi

    Chris and I are thinking of you all today.. I really wish I could be there just to give a hug. We love you guys.. Rest in peace miss Elie.

  5. Jodie Brooks

    We’ve been thinking about Elie so much since your last post. I wish I had the words to take away your pain or to comfort you in some way. Please know that we are here for you in what ever way you need.

    Rest in peace sweet Elie. We never got to meet you in person, but you sure touched our hearts and lives in so many ways!

    Tiny Angels rest your wings
    sit with me for awhile.
    How I long to hold your hand,
    And see your tender smile.
    Tiny Angel, look at me,
    I want this image clear….
    That I will forget your precious face
    Is my biggest fear.
    Tiny Angel can you tell me,
    Why you have gone away?
    You weren’t here for very long….
    Why is it, you couldn’t stay?
    Tiny Angel shook her head,
    “These things I do not know….
    But I do know that you love me,
    And that I love you so”.

    Love, Pete and Jodie

  6. Wendy

    I’m so sorry. Here, I’m angry and speechless and so very sad. So my love is over there with you.

  7. Polly

    Sweet baby Elie rest in peace and watch over your wonderful parents. You and your family are in my thoughts and prayers.

  8. Aunt Shyrl

    All my love is with you both today, and each day beyond.

  9. We sure will miss Elie’s little smiles and will never look at a balloon without thinking of her beautiful eyes watching them. She was a great connoisseur of balloons! And of course her cute ‘stories’ telling us about…well maybe the secrets of the whole universe or maybe just how happy she was.

    Mari & Darin, you guys are the best parents. You gave Elie the most love and happiness possible. I am so proud of you. Now it is your time to heal and rest, to recover and remember. We love you and keep you in our hearts and thoughts right now and always.

    We will see you soon. Erin & Shannon

  10. Karen Hoffmeier

    Bruce and I share in your deep sorrow. We will keep all of you in our hearts, thoughts and prayers. Eli’s beautiful eyes are etched in my brain.

  11. Annette Clarke

    Marietta and Darin…I am so sorry for your loss. I have been following your blog, but have chosen to stay in the shadows; truthfully, not knowing what to say; but feeling your every mood with Ellie. There is no way I can ever know your pain, but as a mother and grandmother, I can imagine it. You are in my prayers and thoughts…two very strong people, dealing with something most would never be able to do. Stay strong, God bless you.

  12. rebeccalehmanperez

    Ian just called; the three of us are in such sorrow. We are so sorry for the whole diagnosis and now, for the loss of your dearest baby daughter, Elie Bean.
    In our deepest sympathy, Rebecca, Ian and Tito.

  13. Kelley

    I can

  14. Benton & Michelle

    We are so sorry for your loss of Elie. There are no words of comfort that can be given with the loss of a child. We will always remember Eli and her love for life and will miss her. With all of our love – Benton & Michelle

  15. Heather Prymak

    Darin and Marietta, we are so very sorry for your loss. I have been following your blog and hoping you would have more time with Elie. If there is anything you need, please let us know. Our thoughts and prayers are with you. Heather & Andy

  16. Pam Jones

    Darin and Marietta, I am so sorry to hear about your loss. Elie was a beautiful baby and will always be. Kipp and I have been thinking about you and send our warmest thoughts. – Pam

  17. Kipp

    No words suffice. You two have shown such grace, love and strength. Elie was lucky to have you as parents and we are lucky to count you as friends. Sleep tight Elie, a short but bright star…

  18. Cyrus

    You’re My Star, My Dear
    © Alex
    The beam shines down,
    The rays so bright,
    The stars come forward,
    At the dead of night.

    I feel you close,
    You’re always here,
    The glow of the sun,
    You’re my star, my dear.

    An angel gained,
    A distance apart,
    Our friendship lives on,
    A place in my heart.

    I feel you close,
    You’re always here,
    The glow of the sun,
    You’re my star, my dear.

    A loss like this,
    Won’t heal too soon,
    You light the sky,
    The sun, the stars, the moon.

    I feel you close,
    You’re always here,
    The glow of the sun,
    You’re my star, my dear.

    I had to find something that could express to you how much your little girl impacted me in such a short time!!! She is loved and will always be remembered!!! My thoughts and prayers are with you both and your family…

    Love you all,

    Auntie Cyrus

  19. Diane

    Mari and Darin – thoughts and prayers are going out for you and your family. Elie was a very special child and the love you have for her will always be with you. Elie will always be your guardian angel in heaven. Please let me know if you need anything.

  20. Kelly

    I’m so sorry. Above all else that sweet little girl was so loved and she knew she was loved.

  21. Dana

    Marietta and Darin… I am so sorry for the loss of your beautiful little girl. I am a friend and co-worker of Lesli Anne and have been blessed to follow Elie’s Blog. I feel Elie was very blessed to have such wonderful parents to make her short life such a full and happy one. You are both in my thoughts and prayers! I can just imagine God holding a healthy little Elie who has no illness and who can feel all the love from her parents, family, and friends. Rest in peace little Elie.

  22. Judy Kuniansky

    I’ve been keeping up with you through my neighbor, Eliie’s Uncle Rob. It is with great sorrow that I heard about the loss of your baby girl, Elie Bean. Elie brought light into the world in many ways. Her love for you and her family, her sweet disposition, her inner and outer beauty, and her joy at every new discovery, will be memories to cherish. She taught me and others about SMA and hopefully, her life will help other families cope with difficult situations. I am so very sorry for your loss. It has been a heartbreaking diagnosis for a jewel of the universe. You helped her achieve her best possible life, full of love and impeccable care.
    May her memory be a blessing to you and may peace be granted to all who mourn her. Judy Kuniansky

  23. Ben & Christina

    How lucky Elie was to have parents like you. Parents whos love inspires us all to love better, unconditionally, and more completely. And how lucky we all are to have met (or shared) the gift of Elie. She will forever be in our hearts and memory. Last night I found myself singing a song from my youth as an alter boy … it’s a blessing that I wanted to share with you

    May the road rise up to meet you.
    May the wind be always at your back.
    May the sun shine warm upon your face;
    the rains fall soft upon your fields
    and until we meet again,
    may God hold you in the palm of His hand.

    Until we meet again Elie, you will be missed.

  24. Liegia DiFazio

    Marietta and Darin, it’s been ages since we last spoke, but those old Nethopper ties run strong. Joanna contacted me today. I am so very sorry for the loss of your darling Elie Bean. But I know that she was blessed to have the two of you to care for her, love her, play with her and guide her while she was here. My heart goes out to you both.

  25. I am so very sorry. I can only say that, having lost my son to SMA, I know your pain and am here for you. I hope that my Andy met Elise at heaven’s gate.

  26. The Ketterl family

    Marietta and Darin,

    I am so, so sorry to hear about Elie. You guys will be in our thoughts and prayers.

  27. Patty Thomas

    I cannot help but shed a tear. Such sweetness and beauty is a rare gift. We lost our little greatgranddaughter in March to the same thing. She was 8 months old. I tell her everyday how much I love her still and cannot wait to see her again when I too will join her. The deep love for these babies doesn’t stop when they leave this realm The wonderful thing about love is that it grows and grows, almost like a living organism so that it engulfs our being and holds us safe and secure until we once again can kiss those sweet cheeks and hug that wonderful little girl again.

  28. Stacie Buckley

    I just learned about this. Sorry doesn’t even begin to cover it, but it’s a start. I am sending you thoughts and prayers and the hope that memories of sweet Elie can get you through this. I wish there were something I could do to make this easier, but I recognize that this a bigger than any one person.

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