Day 765/137


The parallels between birth and death continue to make themselves obvious. Both processes have a natural ebb and flow. When there is a deep breath, it is followed by a much needed exhale. When there is a moment of intense pain, it is followed by relaxation and normalcy. These slow waves allow for proper pause, for reverence, for gentle transition. The challenge is accepting that all phases are part of the same reality.

Last night was not easy. Benjamin’s pain continued to increase, and we increased the dose of his basal Dilaudid along with it. Also, somehow, his peripheral IV line came dislodged from his hand, and he woke up feeling wetness on his skin; it was blood, and in no small quantity. We turned on the lights and transferred Benji to a chair while we stripped his bed and called our nurse. She helped stop the bleeding, which of course looked worse than it was, but it was a frightening few minutes. I’m thankful that Michael is here with me. He has adapted to the rhythms of the seventh floor well, and is by my side the moment Benji needs help.

The kindness flowing into this room continues. Today’s first delivery included a box of donut holes. Benjamin ate one and a half of them. I was so happy to watch him eating. Such pleasure can be derived from the simplest things right now.

Morning rounds were really difficult. Shari and Dr. Stapleton, the weekend oncologist, suggested that we wean Benjamin off of any unnecessary volumes of fluid. His lungs sounded more coarse than yesterday and they felt it was time. They reduced the rate of his total parenteral nutrition (TPN) today, and by night shift, it was removed completely. They discontinued all remaining antifungal and antibiotic medicines as well. And they said that while Benjamin’s platelets and hemoglobin were both below transfusion parameters, they recommended only giving platelets today–and from now on. Excessive bleeding should be prevented, but the volume of red blood transfusions at this point will only add burden to Benjamin’s organs, which are trying to slowly transition. This conversation was so hard to accept. Every decision I’ve made for over two years has been made to help Benjamin live. Now I am making decisions to help him die.

Dr. Oshrine came to see us this morning. I can hardly look at the man. His sincerity was palpable when he told us how devastated he was, and how sorry. I told him through tears that I didn’t know how to thank him for everything he has done for Benjamin–but we will find a way. Michael and I are looking into the best avenue to support Dr. Oshrine’s research efforts, in Benjamin’s honor.

Benji was surrounded by his entire inner tribe this afternoon–Paw Paw, Nanny, Aunt Sarah, Lilye, Lotus, Mimi, Kathy, Gana, Michael, Banyan and me. Benjamin rested and did his brave work to the sounds of Paw Paw’s guitar. We were fed by our community twice more today. Rainbows danced around the room.

Benjamin’s need for pain medicine increased throughout the day. We are finding success by alternating adjustments in his basal Dilaudid rate and the amount he gets when he presses his button. As his pain is increasing, so is the size of his abdomen. It is more distended than ever, sometimes causing him to arch in agitation. We’re told it isn’t just the swollen liver and spleen, but fluid shifting in his body as well. This is part of the process.

During Benjamin’s few waking hours, he had moments of lucidity and capability that both filled us with gratitude and shook our resolve. He actually asked to take a bath tonight. He walked to the bathtub on his own, oxygen free, with me pushing his pole behind him. Michael brought in a portable oxygen pump just in case. We filled the tub with epsom salts and essential oils and I sat on the floor and washed Benjamin’s body like I have done so many times before. I used every bit of strength I had to stay in the moment, enjoying his deep relief.

After Benjamin’s bath he felt well enough to play a game with Banyan on their phones. He was himself. He was sarcastic. He ate a little bit of food for dinner. He held his oxygen saturations longer than he has in many days, going several minutes at a time without the need for his mask. It was impossible not to feel hopeful. Michael felt it. I felt it. It was a shiny, sharp, double-edged sword. Should we have given him that blood transfusion? Did we stop TPN too soon? Have we given up? As they have done so many times before, the nurses reassured me. No one in this hospital, least of all Dr. Oshrine, would allow a shell sticker on our window if there were so much as a fraction of a chance that Benjamin would overcome this burden of disease. What we saw tonight was part of the process, and it was a gift.

As Benjamin sleeps peacefully with a much lighter IV pole, I am thankful tonight. I am thankful for every moment we can share with him, from the normal to the beautiful to the terrifying. I am thankful that his pain is well managed and that he is not struggling for oxygen. I am thankful that Michael and Banyan are here with us and that our family and community have our backs in the biggest way. I accept the ebb and flow he is experiencing and am thankful for the balance it creates. I trust the innate wisdom of Benjamin’s beautiful, dying body. He will know what to do, and somehow, we will know how to help him through.

64 thoughts on “Day 765/137

  1. To see this picture and the love in that room makes my heart swell with so much emotion. I love you and your amazing family more than words.

    1. Praying for God to bring you everything you need at this time. Tears stream from my eyes as I read you words. I can not imagine what you must be feeling. I am inspired by your strength.

  2. You are such an amazing mother, wife and friend. I am so glad I met you and that we have become friends. We will continue to pray for Benji our little buddy and for you and your family.

    Please let us know if there is anything we can do for you day or night as we will always be here for you my friend!

    The Ganoe family

  3. what a healing balm that bath must have been. you are such an amazing, super-hero mama-doula. holding you all in loving, rainbow star energy.

  4. Sending you all waves of love and deep admiration. You have loved him purely, unceasingly and absolutely, and that is all you can do. May Grace surround you all, at this time. Big hug

  5. Your words are so pure and so real that it feels like we are in the room with you. Certainly I am there in spirit, along with hundreds of people in our community who are following Benji’s every development. My prayer for all of you is peace and comfort. I am sending all my love.

  6. It’s clear that you recognize there’s more to life than material existence. It’s as if Benji were in prolonged labor awaiting to be born into a bright new realm, like a shot of pitocin to press on toward natural delivery instead of a quick c section. No doubt souls on the other side are as eager to greet him as we are sad to let him go. Thanks for sharing your heart with us. It’s so comforting to know Benji is still experiencing moments of elation and continually basking in your love.

  7. I’m continuing to pray for you and your family, Laura. What a blessing you are to Benji, your family, and all those you share your journey with. Lots of hugs and love from your village.

  8. You are right there is a lot in common between birth and death. You cannot rush either, you can experience pain and joy, you are with friends with both, their is a rich reward at the end etc. May today be a day of peace, love, prayer and spirituality. Love ya and praying for you all.

  9. I continue to hold Benji and your family is love and light. I have no words of advice nor words of additional comfort, but know that the love you have for each other will help Benji with his transition.

  10. Laura, we’ve never met, but we are friends of your friends (Jenni, Holly, Rachel) and have followed your journey through the blog. My family has been praying for Benjamin (and all of you) every day. Thank you for sharing this incredibly difficult time with all of us. I hope you feel the love and prayers we are sending the way that we, as fellow parents and siblings, share in your pain. God bless you all.

  11. I wake up thinking of you and Benji and all through the day I come here to read and reread your words and marvel at your strength and honestly. If you only knew how much your writing comforts those of us who care so much for you and your family. You are my hero. Thank you and PEACE.

  12. Laura, this photo speaks its own words. It tells us about life, love, dedication, endurance, bravery, and acceptance. It’s a journey we must all face and yet you all have managed to create such a strong and beautiful environment for him when the time comes. Thank you for sharing these updates allowing us to be a part of the process.

  13. Your beautiful family is a constant presence in my heart. I am with you in spirit and I hold a place and light a candle for your boy each day now. I am profoundly sorry for what your family is facing, but remember that there is a vast community rallying behind you for anything you might need. There is goodness and light in that when there is such darkness to face.

  14. You’re such a wonderful mom to your courageous son. I smiled when reading how he enjoyed his root beer & donut holes. Praying & reading your entries daily as you’re an inspiration to us all. God bless you all.

  15. Laura, we’ve never met, except through your blog. Friends in our LAF homeschool coop posted it in my feed. My daughter and I have been praying for all of you since. Please know that you all loved and prayed for multiple times a day. You are not alone. You are loved.

    May you all be comforted by God the Father who knows this road you trod, firsthand. He knows and sees all and He’s right there in your midst.

    Hugs and love,

    Christine and Julianna

  16. Sending you and your family so much love. Thank you for sharing your journey of transition so beautifully filled with divine purpose.

    We lost our 16 year old daughter four years ago. My son was 13 at the time. Know that he is there for your son if there is ever an interest. I am here, too, for you and your family.

    May the grace of God surround you today and all the days to come.

    Peace be with you all. God bless. ♥️

  17. A skilled midwife can take what could be a frightening, exhausting and painful process and instead transform it into one that is peaceful and magical, where the spiritual world feels palpable and accessible. You are the most amazing midwife and mother I have known. I am blessed and honored to know you and love you. Sending you all love…Tracy

  18. “My country was made for noble hearts such as yours, no matter how small their bearers may be.” Aslan, Voyage of the Dawn Treader

  19. Our hearts and prayers are with you as you bravely make this journey . We are blessed to follow . May you find peace with Benji at the end .
    Rowena, Erin, Nathan and I send our love to all of you.

  20. Dear mama midwifing her baby.. you are not alone, there are countless mothers who’ve gone before you, you have access to all those mothers, all their strength, all their wisdom as we are all connected. You can call on them at any time, just as you can call on your tribe at any time.. we are all here, no matter how close, we are all here to support you with anything that you need during this delicate time. Sending you love, strength, wisdom, comfort, and peace.

  21. Continuing to try to help light your journey with love, prayer, and waves of well wishes, all sent in abundance.

  22. Thinking of you, your lovely boy and your family daily as you are navigating through this difficult path. May there be sweet moments of comfort and peace for you to hold in your heart. Thank you for continuing to teach us, I am in awe of your bravery and wisdom Laura!

  23. I too am praying constantly for Benji and his family. This is the deepest most profound spiritual experience and Laura’s courage to articulate the joys and sorrows of the process makes us all feel as though Benji is our boy too! He is loved by so many!

  24. Thank you for sharing your journey. Your words are beautiful. I have always admired your work in advocating for midwives. You are a mothering inspiration as well. Sending so much love to you and your family.

  25. Laura and family, we are thinking of you and reading and clinging to every word. We give all our love, hopes, and prayers to you, Benjamin, and your family at this time. You all are amazingly strong, heroes — every one of you.

  26. Beautiful and heartbreaking. sounds crazy but what a beautiful way to prepare to leave. So much love and compassion
    Sending you love and strength from Vancouver, Canada
    You are in my thoughts. ❤️

  27. Praying for continued peace for all. You have an amazing ability to express with words. I’m sure that part of the legacy you seek to raise in your sons name, will be with words- such a gift you have. ❤

  28. I am praying for Benjamin and
    his family and doctors and nurses.
    May God Bring you all peace and love
    and healing. Sending love and hugs

  29. Your family is modeling so much for our community, during the hardest and darkest time of your lives! Though we do not know you personally, our thoughts, love and prayers are with each of you during this journey, from SRQ. May God continue to surround you as you find comfort in the Shelter of His Wings, the Almighty. May His Peace envelope you. <3

  30. For two days now I’ve visited your blog and just read. Tears every time. Although I don’t know you. I’m so grateful your sharing this. I’m praying for Benji and your entire family. Your truly what I know to be a beautiful mother that has a atrength that can’t say I would have. Such a beautiful family. Wishing you much comfort and peace at this time.

    April King

  31. Laura,

    Please know that even though words can be of little comfort at this time, that I am praying for you and your family. Your son is so very brave and your strength is incredible. God bless you and keep you.


  32. I’m so moved by your words and the courage your display in accepting the inevitable. I’ve been in one of your shoes, I could never say both as we celebrated by daughters 20 year clean in 2016; she was 2 when diagnosed. I pray for all of you, I pray that God lays his hand upon each of your hearts and shoulders as you move through these agonizing processes. I send my love to you and I wish I could pray for his healing, but I understand the inevitable. Instead I will pray for the wisdom and guidance you all need to pain through this.

  33. Je n’ai pas tout lu ni compris en anglais.
    Je n’ai pas eu besoin de tout lire ou d”avoir un anglais parfait pour comprendre, parce que cela est si profond et si réel.
    J’ai conforté une chose en moi : l’amour, le vrai, le sincère, le réel, existe dans notre monde.
    Je vous envoie toutes mes meilleures prières, tous mes meilleurs vœux, tout le meilleur pour Benji et sa merveilleuse famille… Il a de la chance de vous avoir.
    Continuez à prendre soin de vous tous.


  34. This is my second visit to your blog. I have so much admiration for you and your family. Much love to all of you. I’ll pray for your strength.

  35. We continue to send our love and prayers for your entire family. We only wish we could do more. Love and prayers Cindy and Guy.

  36. I remember Benji when I was in preschool. I just turned 11 now but i still mostly remember his characteristics, he was kind, funny, loyal and lots more. I remember going to school with Benji in preschool at Earth Angel. He was one of the most fun kids in the whole class. Me my mom and my little brother send you guys much love.

  37. Benji, you are kind you are good you are exceptional. Laura Mike Banyan and all of your loved ones are kind they are good and they are exceptional. Always in our thoughts and sending much love and strength. We love you Benji boy!

  38. Blessings to you, Mom, and to your tribe as you loving transition with your beautiful Benjamin. I surround all of you in the warmth of my heart.

  39. Laura, I’m Misha’s mom. We met at all childrens. I know what you are going through. We lost Misha January 12. Don’t think about what is to come enjoy and make every precious memory you and your family can. Celebrate him. There will be time later for years. I’m so sorry may God and the knowledge that you did everything you could and all of you were there for him bring you comfort. Jackie Kozel
    P.S. The rainbow you gave hangs in her room now. Thank you for that

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