My Darling Ben,

We couldn’t get you comfortable at home. You didn’t have many lucid moments past Sunday morning when the hospice nurse increased your morphine for the fourth day in a row. You started sleeping more.

But what we were doing at home wasn’t enough. It all moved so fast. Your sweet face was so swollen from that horrible bastard of a disease. Relentless fucker. Hadn’t it done enough? No. It was going to make the end miserable, too, by finally showing what it was fully capable of.

A week prior you were meeting your best friend in New Jersey and today you can’t speak to me. And despite a constant increase in pain meds, you’re still experiencing discomfort. We get you through Sunday. We stumble hard through Sunday night. Monday morning we made the decision to move you to the hospice facility.

It was the right thing to do.

Your dad carried you down the stairs and gently placed you on the stretcher. We covered you up to your chin as the EMT’s buckled you in. I went outside with you to the ambulance. The sun was incredibly bright, and your body responded with the appropriate reflex of a wince. A boy walked by on his way to his buddy’s house, curious as to what was happening just a few houses down from his. We locked eyes for a moment and I thought to myself that he probably didn’t even know another boy – my boy – lived in this neighborhood, too. I felt weird about that for a minute and then climbed into the back of the ambulance.

“Talk to him, honey. He can hear you,” the EMT encouraged me as she scribbled on a clipboard. My hands placed on either side of your face, my lips touching your forehead as I whispered and wondered… “can you? Can you hear me?” So I told you a story of how I was pretty sure you would get the job at Rainbow Bridge, greeting all the pets as they arrived. I imagined you responding to me with “You mean I have to get a job in the afterlife? I can’t just “chill out” for a while? And I’ll be pissed if this place doesn’t have WiFi.”

We were at the hospice facility for less than 12 hours. And even though I know what “unresponsive” and “hospice facility” and all those other terrible words mean, I still thought we would somehow come home with you. I know that sounds unreasonable. And, as it turned out, it was totally unreasonable. We left there around midnight. Without you.

I watched you die. In those final moments my eyes were glued to your neck, following your weakening pulse as it slowed… stalled… jumped…. You gasped hard. I think I screamed. I understood immediately and with great clarity the reasoning behind having a DNR because as I was witnessing this, all I could hear was my soul screaming “SOMEBODY PLEASE DO SOMETHING! PLEASE HELP HIM!” I pushed the nurse’s button and they rushed in to be by our side as you died, their hands on my shoulders, knowing what was coming next.

One more labored, gritty breath and then you were gone. Maddy was, thankfully, out of the room when you died. I kinda think you planned it that way… you knew that she needed mercy on this. I know she thinks she failed you because she wasn’t there. If you could do something to alleviate her grief over that, I’d appreciate it.

Also, while we’re asking for favors, know I’m listening for you at every turn and missing you desperately. Your once quiet presence has turned into an excruciatingly loud void. How can you be everywhere and, yet, nowhere? It is absolutely confounding.

This sucks, Ben. I miss you, my darling, and I love you so very much.

Love,

Mom

 

 

 

 

 

20 thoughts on “”

  1. I’m sorry I wasn’t there. I wish I could’ve seen him one more time. I remember the birthday parties, playing Mario Cart or some other Nintendo game I haven’t thought of in forever but will always associate with Ben. I remember Mount Rushmore and the long drives there and back. I remember his bedroom and the bunk bed and the smell of your house. I remember his long, fierce and fiery ginger hair.
    I’m sorry I wasn’t there. I miss you all terribly.
    This is likely to get lost in the hundreds of “I’m sorry for your loss” messages I’m sure have been pouring in. But I do hope you read this.
    I love each of you. Tell Maddy I say hello! I’m sending you all my positivity and love.
    Your friend,
    Emma:)

  2. “If you could do something to alleviate her grief over that, I’d appreciate it.”

    This, right here, will help you get through the next few months. Ben is out there and it’s clear you know this. I’m so very sorry, mama.

    I’ve been following Ben’s story for a while. I’m not sure how I came across it – one of several I’ve followed since my daughter was diagnosed in 2012. My daughter died last March. There is a community of parents who have lost children to cancer and while we can’t know each other’s exact pain, we understand the shape and scope of it and we can hold each other up. We even have a Facebook group. I’m sending you love and extending my hand if you ever want to talk. Thank you for sharing Ben and your journey. Your writing is beautiful.

  3. I’m so so sorry. I know loss, but not of my own child. I can only imagine how heavy this is. Suffocating! Excruciating! Just know that we are here, we are listening and praying yet for you all. You continue to amaze me. I know a book is going to happen. You are such an amazing writer. It will be healing for you and us too.

    Please tell Maddy that Ben knew best and she is loved by so many. Ben will live on through her. And she will have an amazing life! Full of Joy!

    God bless you Sarah! You are not alone!

  4. This had to be so painful to write. No one ever wants to live a parents worst nightmare ,yet you did and on top of it you shared it with the world. I admire your stregenth and courage and hope I can be a mere fraction of the amazing mother and person you are. I know your sweet Ben watches over you every single day. He must be so proud of you and his sister. He could not have had more love in this life then what he has and always will have and he knows it! His suffering is over and while his body is gone he will still live here forever. Keep shinning your amazing light and never let anyone dull your amazing shine!!! With love.

  5. 😣
    Every morning. every night i listen to Blackbird, Sarah Mclockland, sorry i know i spelled that wrong. It’s my favorite rendition, i will never forget your sweet boy. And i believe he is in charge of thst bridge. one day i will see him, and he’ll say. hey i don’t remember you but thanks for all the prayers for me and my family. And then he’ll give me a dog to play with.😊

  6. My dear friend, thank you for sharing this post , these moments of the unthinkable. My heart and soul is hurting for you . And I so feel and understand every second , every heartbreaking moment of what you went through! There are no words that will make this any easier . Only time will help you to live with this enormous loss.
    Im sending you and your family love and hugs .
    And I’m sure Ben got that job by the rainbow bridge and my Leah has welcomed him ! They are having a blast ❤️🙏

  7. Precious momma … words fail me. What could a momma whose teenage daughter is still in the fight, possibly say to help ease the pain of your anguished heart?

    While I strive to cling to my faith, I challenge it continually, refusing to accept Cancer is some part of any ‘great plan’ in any child’s life. I don’t want to hear, “God is in control,” or “God must have something great in store for you!”

    No! I will never believe in a God who permits such suffering of children who haven’t lived long enough to even go out into the world and do wrong. Cancer does not have the fingerprints of God upon it. It is evil.

    I would watch your videos as you would give updates on Ben and mentally take notes. I wanted to be more like this amazing mom whose gentleness, intelligence, and keep-it-togetherness would somehow bring comfort to those watching Ben’s miracles unfold.

    Deeper still though, was the odd
    connection I felt for someone I had never met. I fear everything you have lived.

    I watched Ben’s celebration and was in awe of your grace as His tender mercies obviously carried you through. I hope you realize that while Ben’s suffering has ended, there is much more to your and Ben’s story, yet to be told.

    You are are brilliantly gifted and in possession of a heart which connects to others – especially to those of us caught up in this daily struggle of watching our child gather strength each day for another challenge to push through the pain and anguish of living.

    I hope you consider writing a book. I believe your best bud would be right there to fill your heart with the inspiration to fill page after page of your and his journey. There are moms and dads out here who could use a little inspiration on how to keep this road as level for our child as possible, even during the turbulent times. You did that.

    You and Ben have such a connection; I hope one day, you’ll share “the REST of the story” with us about your life with sweet Ben.

    Our family is praying for each of you; special prayers for Maddie. Big hugs to you, Momma.

  8. So painful to read, yet the continued communication between you is so beautiful! Give yourself a hug today from Ben. I’m sure (pretty positive) he is looking over you. Thank you for sharing in such a painful time. You are beautiful!

  9. Sarah, you are such a vivid, wonderful, gut wrenching writer! This just puts me right in the room with your family. It is heart breaking what you all have been through! You need to compose this blood into a book and tell Ben’s story. I pray for your family all the time. I truly miss seeing post about Ben. I know he is at peace but it is still hard. So I just can’t imagine what your family is going through. Praying for you all.❤️

  10. My hearts breaks for you. Your pain is unimaginable. You all were and are amazing. You stood strong for a long time, always coping through love and kindness. I pray for your peace and comfort. Please know how incredible you and your family is. Love and prayers. Linda

  11. This takes my breath away, I can’t breath through the tears. My heart breaks with you. So much love to you Sarah!!

  12. Sarah,

    I will continue to lift you and Maddy up in prayers, as well as share in the pain of your immense loss. This sucks for sure!!!

    Big hugs from where I live in Colorado,

    Rebecca

  13. Sarah, I am so thankful that you all had the loving folks at the hospice facility with you. They could support and comfort you in a way that no one else could.

    Sweet, loving Ben gave it all he had – and then some. As you said, just the week prior, he was visiting a friend in Jersey. That’s something I’ve always admired about Ben. Your posts told of scans that stunk; God-awful, brutal chemo regimens; tests, tests, and more tests. Yet, Ben would be visiting with his beloved college team (I’m sorry – I can’t remember their school name right now), or he would be hanging out with Maddy. What an incredibly generous, giving, loving soul Ben was. I hope that Maddy will come to recognize that she did not let Ben down by being out of the room when he died, because she never, ever let him down when he was alive and next to her.

    My apologies for such a long post, but I’ve not yet been able to express my condolences to you all. It’s been hard to put into words, the shock and sense of loss I feel – and I’m only a Facebook follower of many years. I can’t begin to know how you’re coping, Sarah. Just know that there are a gazillion of us who continually think of your family – you, Maddy, and your beloved Ben. May God bless you all. With much love from Virginia

  14. It sucks momma. It has been almost 3 years since savannahs death and most times all I can say is it sucks. Keep writing, I don’t know when but eventually it will suck less. Love and light to you today and everyday.

  15. I have followed Bens story for about 2 years.No words can express what took place at the end.I also held my Dads hand as he slipped away to lung cancer.My heart breaks for you.you and Maddy are in my prayers. 💕

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