Day 764/136


Benjamin slept deeply and peacefully last night and I followed, breathing with him. I woke up at shift change, grateful to see one of my favorite nurses coming on board to shepherd us through these next days. I did not get up to look at numbers. I am not writing them in my binder anymore. I stayed in bed to look at my boy, hoping it wouldn’t be the last time I’d see the sunrise on his skin.

Benjamin’s face was such a healthy color this morning that it played tricks on me, especially when I heard that his white cell count had decreased again. But there is no reduction of disease. Benjamin’s belly is more distended than ever, to the point of altering the shape of his navel. His oxygen has been increased to 13 liters, almost maximizing the capacity of his current mask. The gurgling, rattly sound in his chest is increasing, though his lungs sound clear. His transition is progressing. He is working through it, gently, slowly, and beautifully. This is really happening.

During a conversation with one of our nurses, I expressed my concern over Benjamin’s ongoing need for blood and platelet transfusions. I wondered if we were being selfish. She reassured me that we absolutely were not. Continuing transfusions only ensures that Benjamin will avoid as much unpleasantness as possible as he completes his passage. I am more grateful than ever for blood donors. His comfort and peace is so important right now. This morning he received six units of platelets; it was his 92nd transfusion.

The Palliative Care nurse practitioner came to see us this morning. She reviewed Benjamin’s comfort medicines and made sure our families were taken care of and had their questions answered. For the first time, Michael and I shared some of our thoughts and questions about decisions we’ll have to make in the coming days. Such a feeling in my stomach I have never experienced. I decided that any conversations about the future can wait. Every moment that Benjamin is here with us is a gift. We must be completely present.

The boys’ grandmothers, aunts and cousins returned today to hold space with us. They waited in the hall when Benjamin needed quiet rest, and sat with us when he was comfortable. He experienced a rise in his pain in the late morning and we called the pain team right away. They replaced his Fentanyl patch with a basal Dilaudid dose on his PCA. It worked well. When he felt relief he fell asleep deeply with his head on my chest. When he moaned softly I hummed low with him, laboring together like we did more than nine years ago. I inhaled him, studying every pore, as if he were newly born. I tried so hard to stay present, but the pain in my belly betrayed me, reminding me with every breath that I will have to learn how it feels to miss him.

We continue to slowly decrease the non-comfort medicines Benjamin is taking. Yesterday and today we eliminated broad spectrum antibiotics. Today we discussed weaning Benjamin off of his total parenteral nutrition (TPN) soon as well, to avoid extra fluid taxing his organs. These are all such hard decisions.

Though Benjamin slept for most of the day, he had windows of lucidity that we all enjoyed. We played a few minutes of Apples to Apples with our family, and in the evening we watched the beginning of a movie before Benji and I fell asleep. When he was awake, he was thirsty for root beer, which we gladly obliged. He wants to do as much as he can by himself, pouring the root beer and navigating the straw through the openings in his oxygen mask until he drinks his fill. It is a gift to witness the relief on his face when the cold, sweet carbonation finds his throat.

The energy surrounding our family and our boy is dizzying. As rainbow stars hang from our windows on the 7th floor, their images are also being sent to us by hundreds of people, from family to close friends to strangers. We were fed lunch and dinner again today and a meal train is underway. Several classes at Benji’s school sent pictures of their students with rainbow stars and signs for Benji. The acts of kindness and words of love and prayers for peace are unceasing. As painful as this is, we are so grateful to be so boundlessly supported in this sacred time together with our son.

Benjamin is sweating profusely tonight and his coughing is more pronounced. His pain has escalated again, so our night nurse gave him a bolus of Dilaudid in addition to the high frequency with which he’s pressing his button. She saw him wincing, and reminded us that we could press his button for him. She doesn’t want to see him in pain either. But Benjamin has been autonomous about pain medicine and just about everything else for more than two years. I will not press his button without his blessing.

There are so many feelings competing in my gut as I watch my son dying. But overwhelming all of them is pride. Benjamin has done everything that has been asked of him so bravely and gracefully. He is doing so now. His light shines so brightly, more brightly than the limitations of his body. Occupying the space next to him as he completes this journey is such a privilege.

106 thoughts on “Day 764/136

  1. It is truly an honor and privilege to hold space for Benji and your family during this transition. I read each update through eyes filled with tears and a fullness in my heart.

    1. If you guys need anything please message me on Facebook or comment here. We live there alot. I’ll be there on the 22nd. If you need toiletries or anything at all. Even a hug or friend. Let me know.

  2. We are praying for you guys and if there is anything we can do please let us know. I am sharing your updates with Cody daily and We are going to hang our star that Benji sent us in a picture frame and hang it in Codys room so he always has it.

    The Ganoe family

  3. As intro: my good friends are your good friends.

    And I am so grateful for your family for being the trail blazers that you all are through conscious dying.

    And I love you all. And thank you for all being you. It is coloring my life in the most meaningful way. And I am so sorry. And may you continue to ground through love.

  4. Holding space with tears. I send my love and the prayers of peace for you all, and that Benji’s passage is quiet, dignified and beautiful.

  5. Sending you every bit of love I have in a quilt of peace… I love you so very much Laura and family… I wish I could take away this pain…

  6. You all are such a beautiful family and we wish Benjamin a peaceful and glorious transition. We love you all.

  7. I want you to know that I read your updates every day, with tears in my eyes and love in my heart for you. Sending love and rainbows.

  8. Our thoughts and prayers are with you in this difficult time. We wish peace for Benji, and your family. ❤

    Tha Hallorans

  9. So thankful that you feel all of us here in Sarasota sending you our love. Benji is blessed to have two amazing parents by his side. ❤

  10. Our rainbow stars hang at home and at Magnolia, loved and battered by the sun. Though a little faded they are as beautiful now as ever. We are keeping you all and Benjamin near our hearts and have a candle lit that will burn continuously until he completes this journey. I wish you grace Laura. And peace for Benjamin. ❤

  11. So much love to all of you. While you are proud of Benji for the work he is doing, I need to share my awe and pride in you. Your grace and peace and love are evident in every word you type. You are doing what may be the hardest work of your life and you are doing it in a beautiful way. I want you to know that I see you and the work that you’re doing and I’m wrapping you in peace and strength. Namaste.

  12. In a field of flowers, the best and most beautiful are always chosen first. Benji will never whither. He will grow in even brighter colors and greater beauty than he did while here on Earth.
    Praying for peace and comfort for Benji and all those who love him.

  13. Praying for a peaceful transition for Your beautiful son and so much strength for the days ahead for you, your husband, and your Banyan.. ❤️❤️❤️❤️

  14. Sending all of my love and as much white light as possible as Benji continues his journey to the next realm. I’m vigorously praying he will have as painless of an experience as it can be. To your family I want to say thank you for sharing this with all of us. It has put so many things into perspective for me as I’ve had a lot of lost and hardships in the last 2 years. But nothing will compare ever. Lastly I am beyond sorry that you are all experiencing this. There are no words. I’m sorry.

  15. Prayers, love, and light…you all are on my mind and in my heart. I don’t know you all that well, but I remember seeing Benji at school last year…his smile that day has stayed with me and that is who I see every time I read your words. I will continue to hold you in my thoughts as I know so many others are.

  16. Handsome, clever, shy smile, amazing laugh with dancing eyes. Benji this is how Gia and I hold you in our hearts and pray for you. Recess, school parties and playing games. Making yummy snacks together. Always a good friend….you are with us, we are with you.

    You All are Always in our heart & prayers
    Gia, Sal, Courtney Tarantino

  17. this, the truest labour of love, that you share with us so freely has transformed me in ways I am so thankful. each day I hold my dear ones closer than the day before, with a little more love and a little more patience. I am so sorry for this difficulty and pain you all endure. I hope that as I feel your pain, and loss, and bewilderment that you all feel unimaginably more sharply, that I hope sharing it with alleviates and lifts it off your weary shoulders by just a bit. You have shown such courage and grace and although I don’t know you, I love you. All of you. Wrapping you up in light and wishing a peaceful transition for Benjamin the brave and for you, brave mama, all the love.

  18. Through out the reading of your journey I have been thinking of how long and short these years are. Benji was diagnosed just as my second son came into this world. It was your birth activism that has changed so many to find their own path and advocate for it. It was hard to see your light needing to shine in a different direction and see you go onto this path lighted with rainbows. I’ve been in awe of your families connection, strength, fortitude and gratitude. I’ve never seen anyone journey the way I’ve read of yours. It’s humbling, grounding and lifting to read or witness in fleeting glimpses of your family these past two years. I’m so happy you can feel us all standing with you even when you can barely feel your own legs. Benji what an incredible person you are. We are all here standing tall, glowing like rainbows and opening our wings like your Phoenix to hold you all in and close.

  19. Although I don’t know you, I saw your story via other friends and
    immediately found myself reading your every word with tears streaming down
    my face. As a Mom, the most unimaginable thing in the world. Your beautiful
    words, the amazing strength of Benji, you, your precious family is an
    example for us all. I’ve suffered losses but cannot even fathom what you
    have and are enduring. May you all feel all the love and comfort we are
    sending and may you all find peace in the days ahead. You are a shining example
    of strength in one’s darkest hours, of the everlasting love of family. Thoughts
    will be with you all.

  20. I\’m sending all the love I have to your sweet family. I love your sister as though she were my own, and I\’m carrying you all with me everywhere I go. My best wishes for a peaceful transition for Benji the Brave.

  21. You and your family are providing the purest example of love and staying present that i have ever seen. May the gifts of that continue to sustain all of you through the pain. I add the love of another stranger, once removed, from gainesville. So much love. I only wish that could remove the pain.

  22. Benji is touching countless lives, including mine. No parents should have to go through this. I’m so sorry. Your bravery and grace through this time is stunning. Sending you love and prayers. While all of us who are following remain hopeful of some sort of breakthrough, we are following your lead. May the highest and best for Benji’s soul unfold, as gently and sweetly as possible. Wishing you all comfort from around and beyond.

  23. I don’t know you, but my heart is aching for you and your beautiful boy. You’ve been on my heart and mind constantly these last few days. Prayers for peace and strength for you, your family, and sweet Benji ❤❤❤

  24. May love, strength, patience and peace continue to flow. What an amazing child to have blessed so many lives with his hero’s journey story. Thinking of you all each day ❤️

  25. We’re with you, my friend. We are all with you. Thank you for writing these. Been following for some time, of course.

    Taking Benji in my heart to the top of the Rocky Mountains today. Closest to the clouds as we can get.


  26. I tried to come on to this site last night and got the
    message that the site was overwhelmed with traffic and that it had exceeded its bandwidth. Couldn’t help but smile when I realised that Benji broke the internet. ❤️ I love you, Laura. We’re with you.

  27. Laura’s lessons from labors of love. Thank you for teaching us all to be grateful for moments that we would not have otherwise appreciated. *Hugs*

  28. Laura and family,
    we are praying for all of you and Benji during this unbelievable difficult time.

    Sending all the love we can your way!

    The Simon family

  29. We are grateful for your example of strength and grace in these difficult times. Sending Benjamin and all of you our love and prayers. We believe that Benjamin will be the brightest and strongest angel.

    Deuteronomy 31:6. …the Lord Himself goes before you; he will never leave you or forsake you.

    John 14: 1-4 Let not your hearts be troubled; believe in God, believe also in me. In my Father’s house are many rooms; if it were not so, would I have told you that I go to prepare a place for you? And when I go to prepare a place for you, I will come again and will take you to myself, that where I am you may be also.

    John 14:27 Peace I leave with you, my peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let them be afraid.

  30. Your words paint a picture for us that we are there with you, Your writing is a gift that allows for the world to know this incredibly brave boy., whose journey here will impact more lives each and every day. Thank you from the bottom of our hearts for allowing us to take part and send our love and prayers and thoughts and tears to Benji, Banyon, you and Mike.
    You are all in our hearts and thoughts and we are all praying for comfort And peace.

  31. Writing in my journal this morning about benji and you. Writing your names. Thinking of all the folks also writing you names… on the signs… in their journals… on their social media pages. Speaking your names telling of your amazing bravery and grace, in places far and near. In both whispers and shouts… I hope that the voices and the written words mingle into magic that comforts and guides you. I hope you can feel it.

  32. I don’t know your family and yet your story has impacted me in so many ways. I pray that your beautiful son has a peaceful transition and that your family receives all the strength and courage to face all the days ahead. Benjamin you are such an inspiration, you are the strongest young man I know and your beautiful light will continue to change the world! Your family will always be in our thoughts and prayers.

  33. Sending you all prayers for strength & comfort. May you continue to feel all the love & support that surrounds you.

  34. I am again moved deeply and praying fervently for all of you. I am reminded of a special verse that Benji will experience…

    Revelation 21:4 He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.

  35. I have just begun to read your postings. The feeling inside
    Is like no other I have had before. Our families have crossed
    Paths numerous times in the neighborhood. True we aren’t
    the closest of friends but we share the love of family. As a
    son, husband and father of 2 daughters the love for my family
    is like no other. Please know that you have touched my
    heart in a way that has showed just how precious life is. You
    are an inspiration to us all.
    Our thoughts, prayers and love are with Benjamin and your
    entire family.

  36. Thank you for sharing your thoughts and painful feelings during this difficult time. Through your gift of writing our hearts break as we all feel such deep love for your and your family and especially Benji. I am so sorry that you are all going through this. We continue to pray for everyone and know that you are all in our hearts.

  37. I am dear friends with many of your dear friends and they have all shared their caring for Benji and your family.

    My heart is so full reading your grace-filled words asI read them from so far away. Laura, you and your beautiful family are in my thoughts and prayers. There are no words…Just rainbows.

  38. You are all so brave. Your light and the light of the angels surrounding you are shining for all the world to see.
    You are in my thoughts and prayers constantly.

  39. Laura, holding you so gently with loving mama energy. My entire family and so many friends are holding Benji and your entire family in loving, supportive, thoughts and prayers as well. You are doing an amazing job.

  40. Your family is in my heart daily. I am so in awe of your articulation, beauty, courage, and grace as you maneuver through.

  41. Benjamin, our blessings and good vibe to you and your family. You are my HERO. Sending lost us Love ❤ from Gainesville.

  42. Laura, your wisdom sparkles like a diamond. It’s no wonder where Benjamin gets his beautiful light. I hear you… We do learn how to miss the ones we love, and we learn to love them differently, and we learn to let them love us differently, too. Love is a miracle, and that miracle never ends, does it? As we gathered last night on the beach for your family, we were so privileged to celebrate you all, and share how your generosity in sharing your journey, and Benjamin’s journey, and Michael’s and Banyan’s, too, has changed our lives, and grown Benjamin’s precious sparkle to a fire that inspires us to action, a warmth that gives us comfort, and a brightness that keeps us choosing laughter and joy and difficult times. All because of your words, your truth, your connectedness, and your incredible benevolence and sharing. Thank you, and I will have the audacity to believe I can speak for many, to say how grateful we are that you were willing to share this indescribable chapter in your lives with so many, and stay connected especially as the story has taken it’s many twists and turns. You are so faithful to those in your life and what you believe in. You inspire us so, and we love you so much. We are with you every step of the way and will continue to be as you blessed us with the opportunity to be part of your lives. Sending so much life-giving, soul-lifting love to you all.

  43. Although I have not met you Benji, I am holding a space for you in my heart. I am keeping this space full of peace. I imagine it to be a deep bottomless well of blue water. I am greeting every person and situation I encounter today with the peace I hold for you. Peace creates peace. I am being vigilant with this peace so that it can grow and spread and be strong around you, sweet boy.

  44. Sending so much to your family during this journey. It is amazing how much death is like birth. So glad that you are able to hold space and help your sweet boy transition so gently. Doing this work for him will be something that you will hold onto for the rest of your life.

  45. I’m just a stranger who has read part of your story, but I am deeply touched and affected by it. I cannot begin to imagine what you and your family are going through, and I just wanted you to know that I have prayed for your family. And I will continue to pray for peace, healing and strength. ❤

  46. Our love and prayers are with you during this incredibly difficult time. We are here for you and your family if you need anything. God bless you. Our love, Cindy and Guy

  47. As a mother of 3 little boys, I read your entries and am touched by your words. Thank you for the reminder to love and hug and hold onto them a little longer tonight and every night. My thoughts and prayers are with Benjamin and your entire family through this time. ❤

  48. My thoughts and prayers are with your family. You are in my heart and mind. Thank you for allowing me to be a witness to the miracle that you are experiencing and for guiding your baby through this new stage of life. Bless you all.

  49. While I don’t know you personally, as a part of the community we both belong to, of course I know who you are. You blazed the trail for so many of us here in our area and you shared your activism and advocacy so that others could make informed and conscious decisions in pregnancy and childbirth. You’ve been a light unto this community for so long and as you and your sweet family walk this path, know that there are so many of us that you touched inadvertently that are holding space for you and Benjamin now. We may be strangers to you but you’re not strangers to us; you’ve given so many of us strength and courage in our mothering journeys and we can only hope to reciprocate some of that as you watch your precious son transition. As you bear witness to this transition, my hope is that it holds just as much love and beauty as his first transition did. Please hold in your heart that so many people that you don’t know are sending so much love to you all, especially me. I hope one day I get to meet you, a pioneer then and one now, showing us all how to love our babies respectfully and wholly. You are loved.

  50. Came across your posts through a friend on Facebook. Praying for you all as you walk hand in hand through this. Thank you ever so much for being honest and open and allowing others to walk with you, it is such a gift beyond expression! Love and hugs to you, although we are total strangers. May the Lord comfort and hold you as you all hold one another.

  51. As with birth, when we feel like we can’t endure a moment more, we find our strength—that power, that ancient and divine feminine strength—that keeps us going.

    You are surrounded by a scaffolding of love, holding you and your family up to stay the course, to remain present. To usher your sweet boy on through.

    We love you. We support you. And most of all, we are all in awe of you.

    Love, light, and beauty–

  52. Holding you all in my heart across the mile from the frozen tundra. There is three inches of snow on the ground here and spots of sun. I’m so grateful to join my energy with yours in this journey. Your testimony moves me. Sending sweet dreams and rest this evening.


Leave a Reply

Your email address will not be published. Required fields are marked *