Day 763/135

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Benjamin is beginning his bravest work, and we have the honor of supporting him through it. Today was sweet and sad and slow and steady. Benjamin was surrounded by his family–parents, brother, aunts, grandmothers, cousins. We were all uplifted by the incredible force of our community, who fed us lunch and dinner, and who sent constant love and prayers. So many people love our boy. This is so hard.

I was updating Benjamin’s Beads of Courage when the Palliative Care team came in. They had some good ideas for making these next few days a little less invasive–decrease the frequency of vitals checks, eliminate weekend antibiotic pills, remove Benjamin’s feeding tube while he’s on TPN, etc. Each suggestion made sense, and each one made me so deeply sad.

This morning’s labs threatened to give me false hope. Benjamin’s white count was cut in half, and he wouldn’t need any transfusions today. The steroids are keeping his counts at bay but the leukemia infiltration is too great to reverse. The carbon dioxide in Benjamin’s blood is rising. This became very apparent today, as Benjamin grew sleepier and more incoherent. His tiredness is deep and powerful. At one point he asked me if he was getting propofol, the anesthesia he has had for each lumbar puncture. Another time he asked me to look out the window at all the people holding signs (there weren’t any, of course, we’re on the seventh floor). He uttered many other dreamlike phrases today, but they were interspersed with moments of lucidity and pure sweetness. We are so lucky to spend these days together with our boy, living in the exact present, with only one monumental task to do.

We’ve seen other small changes today as well. Benjamin has been moving his hands in his sleep, as though he is reaching for something that isn’t there. He has also developed an occasional cough, but it sounds nothing like the cough that accompanied Banyan’s cold last week. It sounds much lower and more guttural.

We asked Benjamin if he would like to leave his feeding tube in place or remove it. He chose removal. As with every procedure he has endured, he summoned up the courage and bravery to sit through something extremely uncomfortable. Benjamin cried after the tube was pulled out. But he got the job done, and less than an hour later, he was very glad he did. No more formula. I couldn’t help thinking that the Liquid Hope may be the last meal I’ll ever feed him.

Twice today, Benjamin mentioned home. Until then Michael and I were firmly in agreement about staying here. But if Benjamin’s mentions escalate into requests, we owe it to him to consider hospice in Sarasota, and a transport back to our house. I believe we will stay right here on the seventh floor.

After shift change tonight, one of our favorite nurses came by to see Benjamin. I followed her back into the hall when she left our room. We had a powerful conversation. I asked her if she saw any signs in Benji that might help us estimate a timeline. She said that every child is different, and they transition in their own time, when they are ready. Of course. I’ve been thinking so much about the parallels between birth and death, yet this one escaped me completely. Maybe this impending transition has something to do with Benjamin’s thoughts of going home.

I am not afraid of the task at hand. I know I can help Benjamin feel loved and peaceful and empowered and free. I am, however, petrified of the task that follows. How we are going to live without this wonderful boy is absolutely beyond me.

144 thoughts on “Day 763/135

    1. sending you love, sending you hope; i know you can do this. the spirit of love surrounds you, sweet family. we are all with you.

  1. sending it ALL to Benji, Banyan, yourself and your husband.
    you are loved and supported and you are making your way as best as you can as Benjamin makes his way.
    we are all with you in spirit.

    ALL my love.

  2. Love to you All. One day and moment at a time. “One breath at a time is an acceptable plan, she tells herself.”

  3. Anya prayed a powerful prayer for Benji as she winced in pain crawling into bed for the 2nd time just now – “God, please help Benjamin the Brave to not hurt anymore. Take away his pain and please help him to know he is so Brave. Thank you for doing this now. Amen (it is so).”
    And so it is….
    You are all so Brave, so loved and being held in the very palm of God tonight – lifted there by the prayers of countless people. Please feel that in whatever way possible.

  4. You are loved. You…all of you continue to teach us. Your grace and dignity is astounding. Our hearts and prayers are with you.

  5. You are letting Benjamin make his own path. He is so loved by so many and has put his rainbow in all our hearts.

  6. Dearest little family, brave warriors on life’s journey, may you feel the incredible power of unconditional love that surrounds the four of you in every cell of your being.
    Energy just transitions, it has no beginning and no end.
    Deep peace to you ❤❤❤❤

  7. Our entire family is surrounding your family with abundant love. Your are constantly in our thoughts and prayers.

  8. Such a crazy beautiful, amazingly strong family. You are so loved, sending all our love & prayers & hope to you every single day. ❥

  9. You are the best mom in the world Laura! I am sending love and prayers. Thinking of you and your precious family. Much love

  10. Benjamin, you, and your family have shown us what true strength and grace are. May God continue to hold you in the palm of his hand. Much love to you all.

  11. Maybe he feels us – the people with signs – they say “We love you!” and “We’re holding you close in our hearts.” and “Benji is our hero!” and “Thank you for showing us rainbows!” “You’re doing this just right!”

  12. In such heartbroken awe of your love, strength, everything. At a loss for words but just love love love you all. <3

  13. Maybe our bravest Benji is speaking of a home in absolute paradise, where there is always a rainbow in the sky and fishing to be done.:I am sure his Grandpa has already been telling him all about this it..
    You are doing the unthinkable and your doing it so beautifully for Benji…you should be so proud of all of you. I love you all SO much..

  14. Love and peace to all of you. I will light a candle today for Benjamin as he makes this transition, and one for you, his beloved family, as well.

  15. Psalm 23
    The Lord is my shepherd; I have all that I need. He lets me rest in green meadows; he leads me beside peaceful streams. He renews my strength. He guides me along right paths, bringing honor to his name. Even when I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me. You prepare a feast for me in the presence of my enemies. You honor me by anointing my head with oil. My cup overflows with blessings. Surely your goodness and unfailing love will pursue me all the days of my life, and I will live in the house of the Lord forever.

  16. Your wonderful, perfectly marvelous son is so brave, and you all are so very brave. He is not alone in his transition, and you all will not be alone in yours. We are here through it all loving you, and lifting you up. The next task… there are no words, but there is a promise that all who love you will lift you up without end. You are loved, you are honored, you are not alone. All our love and strength to you.

  17. Laura, Our thoughts and prayers continue to be very much with sweet, sweet Benjamin, you, Michael and Banyan.
    Love, Maria and Ryan Sokol

  18. I’m constantly awakened with you all on my heart. Praying for you all continously. I love you Laura and your sweet family. May God give you strength and clarity during this difficult time.

    Love,

    Mallie

  19. Much peace and love to Benji . He is such an amazing strong boy . Strength , peace and love to you all .!

  20. All my love to you Sweet Benji. Your are all so loved!!! I am sending prayers for continued strength for you and Michael and hoping for a peaceful transition to the great HOME. I love you all so much. XO

  21. I love you, Michael. brave Banyan, and Benji the lionheart. For me, acceptance may come one day, but not this day.

  22. Laura, my heart breaks for your entire family. We have been praying for peace and strength. Anthony was just talking about him the other day and was looking for him at baseball tryouts. Benji has a strong, kind and amazing spirit. We are so sorry you are all going through this. Know that you are all in our hearts and prayers.

  23. I thought the same as wendy. Maybe Benji feels all the outpouring of love for him from all over sending him peace and love. Love to you all and praying for you and for his happy transition home, to no longer feel any pain. May light surround you all and give you comfort.

  24. So much love and peace sent your way. Praying for your comfort during this most difficult time. I wish I had some magic words for how you will go on each day. What I do know, is you have a community full of love that will walk belong side you each step of the way. Love to you.

  25. Praying for your amazing son Benji, you Laura, Michael, Banyan and your families. May Benji’s journey be blessed and peaceful – our hearts are broken; our spirits bow in gratitude that we have had the honor to know and love this amazing boy.

  26. Sending you all love and support. Your strength throughout this chapter has been amazing. Please know people are thinking of you and praying for you all over the country. Our hands on your shoulders with the greatest amount of sympathy, ready to anything at all to help.

  27. May the long time sun shine upon you, all love surround you and the pure light within you, shine your way on.
    Going beyond the mind where love leads the way. Surrounding you all in eternal love and holding a place for you to fall. You are supported by the Universal life force – Benji is guided by his God Self. Open Hearts and love for you all……

  28. Thinking about you non-stop, and sending so much love and light. Asking God to ease Benjamin’s pain and yours.

  29. Prayer for comfort and no more suffering for Benjamin I cry reading the stories because I cant imagine as a parent but I was sick when I was younger and close to 2 girls in PICU with the same thing as Benjamin. They were my best friends God called one home to him and left the other here on earth. I pray for you all to have inner peace and acceptance.

  30. He must be able to see all the love signs that are on the wings of our hearts. May they continue to fly past his window

  31. Nothing compares to your family’s strength and love! We are praying for you all day. We love you so!

  32. Yes, we are all holding signs of love and support out side his window. I’m imagining that now. 7th floors are nothing compared to our love.

  33. Oh Laura. There are no words. Your family is the focus of all my prayer and energy. My heart is calling out for the fulfillment of the promise to Benjamin that he will get to sit under his own vine, and his own fig tree, and to never be afraid. Your brave, wonderful boy. Lifting you up, endless hugs and ceaseless prayer, and waves of positive energy and wishes for peace..

  34. Laura,

    I don’t know you or your amazing son, but I came to find your blog through many caring mutual friends who have been sharing your posts. I can’t begin to imagine what you, your family and Benjamin are going through at this moment, but please know that even strangers at this point are sending you all so much love and light during this transition and the time that will follow. Praying for comfort, peace, and all the moments you can possibly get with your sweet boy right now. From one mother to another, sending you love <3

  35. Hoping for strength and courage for you and your family. Praying for peace and comfort for Benji through this transition.

  36. Benji, I saw a rainbow star hanging from a tree at school this morning. Caught in the hustle of the morning rush madness, your star stopped me and drew me in so I could admire it for a moment. I watched it dance in the wind as the warm beams of sunlight illuminated its beautiful colors. Your presence and the love we all feel for you is everywhere.

  37. Love and light and a million other things I don’t know how to say.
    We are here, your silent majority of love, holding your space.

  38. Your strength is amazing. I can’t imagine any better approach you could have taken to each aspect of this. Love to all of you.

  39. Benji the brave, You always had a smile on your face when on the field and are a joy to have on the team.
    You and your family are in our prayers.

    -Coach Mike

  40. I am so deeply moved by all the ways you honor your son and support him through this agonizing process. What a gift to witness. Thank you for sharing your story. Sending much love and light to Benjamin and his family. Kristin (friend of Sarah’s)

  41. Praying for all of you as you enter this phase. Our hearts hurt so much for you. You have one strong and brave boy, and his journey has touched so many. Your family has acted with such bravery and grace and I pray that God give you strength and comfort in the coming days, weeks, and years.

    We love y’all..
    – The Henry’s

  42. Laura, My heart and thoughts, prayers and love are yours and your family’s right now. I wish there was something I could do to make it better for all of you. Peace and love.
    Claudia

  43. The look in your face says so much. I love you deeply, Laura. You are, each member of your family, truly special and beautiful people. I can’t begin to imagine what you are going through, but I am so sorry. I am praying, more deeply than I have in years, for a peaceful transition for your amazing boy.

    I know none of us can comprehend this situation, but I know that there could not possibly be more love.

    I hope that that reminder- that you all love more fiercely and share that more boldly than any family I can think of- brings you all some comfort right now.

  44. Sending you all the love my heart can hold. We lost our child to myocarditis at All Children’s Hospital four years ago. I’m here for you.
    Peace be with you all.

    Beth Knopik
    941-350-2466

  45. Our prayers are ever with you and your family. We ask for peace and comfort in this difficult time. I pray for strength to remain the space and support that your son needs. Most of all I pray that the Lord surrounds you in his love.

    Love,
    The Fuentes Family

  46. Home may also refer to our eternal home: Heaven.
    Prayed for you all at Mass and Holy Hour today. Also placed your names in the special intention box in the Blessed Sacrament chapel. May you all be cradled in the loving arms of Our Lord.
    God bless, Tammy Villasenor (Danielle Lizotte\’s mom).

  47. As you write about the parallels between now and birth it reminds me. . . transition is always the hardest time in many ways. And, yet, the greater and more demanding work lies afterward.

    Tears with you today. Prayers with you today.

  48. Make a plan for Benji’s next camping trip to help you through this transition! Sending love & light & holding my sign high for Benji

  49. Hi Laura, I don’t know you or your family but it appears we have many mutual friends and their love for your family is how I stumbled upon Benji’s story. I am heartbroken for you all and in awe of the strength, courage and compassion you have shown. Thinking of you and sending love.

  50. I don’t personally know you but I do know some of your friends and one of them posted this on FB asking for prayer for all of you. After reading your update from yesterday I am certain that God has blessed Benjamin with brave, strong and courageous parents. He is lucky to have you by his side and I pray for peace for this sweet boy and strength for your entire family.

  51. Constant love is streaming from our family to yours right now. We hold a vision of peace for this sweet boy and to you all during this laboring time. May angels lift your sorrows and give wings to light.

  52. This picture is absolutely beautiful of you all holding hands. I cried when I read this, and I will pray for comfort for you all.
    Shelly P.
    Asheville NC

  53. You are so barave and such an inspiration! You embrace the gift of each moment had. Your son’s life and transition , you and your family are teach many who read this, grace and dignity. God bless you and yours. I have no doubt he will be your angel watching and guiding from a place of peace and love!

  54. Dear Gilkey family,
    Remembering our mamas circle lighting our candles one by one holding the space so dear for sweet Baby Benji’s first breaths it seemed the world stood still. And now, in this present moment those flames that held such sacredness and love for Benji are alite burning more brightly than ever while we hold that space again with the world again in utter stillness. Our deepest love reaches out to you.
    Love ~
    Us

  55. You have known what to do when being presented at so many unexpected moments, with a little clarity and a strong heart and mind. You will know what to do when it’s time; some days you will bask in the glow of memories, and other days, you’ll find the strength, even if it’s messy. Benji will be next to you and Michael and Banyan. Wishing you peace and love now and always! –Shelbey and Bo

  56. Oh Laura,

    I know no amount of words can give you comfort at this time. Please know how strong, courageous and dignified you are. Always know that your love and light has touched so many.

    I know Benji’s light will continue to shine forever.

    Praying for peace, love and light to surround you, Benji and your whole family today and always.

    Much Love

  57. I don’t know you, but I have been where you are. We lost our 17 year old daughter 17 months ago. It was my honour, privilege, and sorrow to be with her and support her and love her as she left our world. Wishing you peace and strength, and sending you so much love.

  58. There are no words for this. I just want you know to know I’m here. Reading, praying, and crying daily. You have been such an incredible advocate and I’m proud to know. Sending so much love

  59. This is hard to understand, and hard to express, that this most difficult of all tasks you\’re in, to guide Benjamin onward, is welling up tears every time I look at each day\’s events, when I\’ve not had the pleasure of knowing him personally. It\’s not just the obvious sting of such a bright, loving, light fading from this mortal world, not just that it\’s so horribly wrong for a child to be faced with this challenge, but that you\’ve discerned your role now – to gently guide him through whatever transition that looms, never losing hope for him, always reflecting back to him the light of your eternal love. These steps that the whole family is taking, to bathe him in such warmth and caring, to not leave him alone in any way to face this fate, has been a counterbalance to the disease, but has had the more potent impact of fortifying his soul.

    From the outside, I seek to take this example to heart and apply it generously, to emulate such devotion to friends and loved ones in each day this way, to communicate how precious they are to me, and to bring about the sharing of how very much we mean to each other. There is no time like the present, and no time to waste with any pretense or hesitation when there are such gifts to be unwrapped.

    May all who see what\’s been done in Benjamin\’s life see his bravery and love his family for standing up with him, standing up for him, and faithfully lifting him up in heart and spirit. May your family find peace through what comes. Still praying for miracles, recognizing that there\’s already miraculous love at work.
    God be with Benjamin.

  60. Sending prayers and love and asking Our Heavenly
    Father to engulf each of you in his loving arms and continues
    To hold each of you close throughout the next part
    Of Benji’s journey. God’s plan for Benjamin is coming
    Full circle. He is so lucky to have such a wonderful
    Earthly family preparing him for his Heavenly home.
    May God ease your sorrow and help you through your
    The next part of your journey. God Bless you all!

  61. Being a Mom who watched her son die of cancer at 21 yr old, know the journey you are on. My heart goes out to you and am sending you prayers . Not a day goes by that I don’t think about my son but the journey goes on .
    Hugs to your family !

  62. I just can’t stop thinking of your amazing family.

    All that makes up Benjamin always was and always will be.

    So much love to you all.

  63. Praying God would wrap his arms around you and give you peace, continued strength. Praying comfort and relief for Benjy.

  64. My love and prayers are with Benjamin and you as you move through this difficult time. I cannot even imagine the strength and faith that it takes to persevere at a time like this. <3

  65. We have never met but I wanted to reach out and say that I am in complete awe of your strength. This is a mother’s love. To love without boundaries. Love that has a start but no finish, no ending without ceasing. It is at the core of us. I can not nor do I ever want to know what you are feeling. Your family is facing the unimaginable. Tears streamed down my face as I read your story. I have no words of comfort that will help. I wish I did. Please know your family is being lifted up to the most high. Our Lord God is walking beside you all.
    Mary E

  66. My many thoughts and prayers are with you and your entire family! This amazing boy is a beam of beautiful light that will forever shine! My he take his journey with the peace and serenity he so deserves and may you all be blessed with a memory that glows forever bright in your home!

  67. Laura Gilkey, you and your entire family are a treasure. You show us how to bear the unbearable with grace, wisdom, compassion and incredible love. My heart is with you.

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