I’ve been crouched down on my knees for so long that I can’t remember if I was looking for something or praying. Maybe it was a little of both. But my knees are bleeding from being down here so long, and, since I am days away from turning 50, I’m willing to accept the fact that it’s getting more difficult to get back up again.

Dammit. Please come out. Please allow me to express all of these horribly horrific experiences that are holding my brain hostage. I’m tired of having them in my head… a screenplay for the tragedy that is relentlessly playing out, whipping into a frenzy that I pray will stop but am afraid will stop. I can’t even begin to edit all the footage so it will make any sense and the maudlin soundtrack refuses to modulate to a different key, which I just know would melodically pull us out of this quagmire of defeat.

Ben is in decline. I cannot make my mind conjure up an image other than me standing on a parapet waving a white flag, conceding defeat. Only it’s not my flag to raise. So I rewind the footage in order to erase that it looks like I’m trying to tell him what to do, even though I don’t want him to do that. I’m just tired of seeing him hurt. And I’m sure he’s tired of hurting. He’s got to be so tired.

So tired.

The kicking is getting slower and the urgency of survival is giving in to the promise of rest. Each push of his patient-controlled morphine allows him to exist in this state of in-between… giving us time to love and grieve and all the terrifyingly beautiful things most people would probably rather avoid.

It’s just shocking how much it hurts.

 

 

 

 

32 thoughts on “”

  1. I am so sorry you have to bare this pain Sarah. All I can do is send love and prayers for peace. Ben is such an amazing kid. All my love ❤️❤️❤️

  2. God bless you dear momma. I feel your pain and anguish. The dear of knowing what is ahead in the coming hours…days must be unbearable and yet you must present to Ben as his strong tower.
    Praying for you all and that Ben will have pain free peaceful last days

  3. Your post are so beautiful! I so wish that your follower’s could take this pain from your family. Your family is always in my prayers.

  4. Oh Sarah, my heart hurts for you. You are on
    a terrifying journey right now and no one can
    short cut the trip. I have no real words of
    wisdom but I understand. The universe hands out the shit stick without explanation. I do
    know though that the Good and Pure are asked to bear more than their fair share. Little comfort. I love you so much. I wish I had been there when you were born. Peace ❤️

  5. We are sending up prayers for all of you, our hearts are breaking too. You all have taught us a lot about Love, strength and compassion. We are so grateful that you have opened your heart and soul to us. I know your going to write a book and I’m going to be first in line to buy it. Your an amazing human and an even more amazing Mom Sarah. Our arms are around you and your loved ones. God bless!

  6. I cannot imagine the conflict, exhaustion, and relentless heartache that you are living. I’ve been standing where you are many times, but never with my child and there is no comparison. To wish him peace and comfort is to say see you in a little while, my sweet child. As the angels visit and you bear witness to the in between, may you find peace, warrior mother, in knowing that it is not in defeat.

  7. I’m sorry to hear BIG Ben is in decline. I don’t have a snappy retort, only a prayer and a wish that he not suffer. If I were closer, I’d give all three of you a hug, even though I don’t particularly like hugs. 🙂

    Please tell him I’m thinking about him.

  8. My son is very sick and I searched for other families that was going through some of what I have been for way to many years. I stumbled upon your page for your son. My heart breaks for him and you as his mom watching him suffer. I will keep you all in my prayers and you are in my thoughts and wish I could help. God bless you all and pray his suffering can ease. Love and prayers sent your way.

  9. Your writings are so beautifully raw that we feel the pain…. This entire universe holds all of our beginnings and ends. We are one, connected. Breathe in what you are so afraid of and let it wash over you….become one with this fear and panic and inside this place you will begin to feel peace….it is not a surrender…it is an acceptance. Gather your strength here and prepare for this ending…so you may anticipate it’s new beginning. You will be together again, and again, and again…the universe is infinite. Love and Peace…

  10. You inspire us…..Ben inspires you/us. I wish I had words to inspire, to erase your pain, to change the future and for certain, the past. I don’t. As you know, watching someone you love dealing with pain is a helpless, miserable feeling. I have that feeling as I sit by watching you and Ben and Maddie…dad, auntie, cousins, grandparents and all the many, many friends of your family also stand by helplessly, dealing with individual feelings. There are no words to fix it all. All I feel confident doing is offering my love and prayers and an open line of communication any time of day or night…..I love you for the
    wonder that you are.

  11. Thinking of you all and praying. I also watched my son suffer, though for different reasons and for a much shorter time than you have. My heart aches for you.

  12. Sending prayers for strength and comforting hugs your way. Watching the suffering of a loved one and feeling so helpless is difficult, but when it’s your child, it hurts even more. Ben is so special and loved by many.❤️

  13. I have been following I Love The Bean. Although we never met, he has touched my life in many ways.. I wanted to try to leave some inspiring morsel of comfort through words, but all of the words I have attempted to write, I’ve deleted, as they all seem so inadequate. Even so, with all earnest, Please know that my mind, heart, and spirit is sending love to all……

  14. Dear Sarah,
    I’m not sure if you remember us but we were members of Alleluia! in Dublin when you lived here. I’ve been keeping up with Ben and praying for all you for several months since our daughter Katelyn saw a post Ben put up and forwarded it to me. We are absolutely heart broken for you as you walk through the valley of the shadow of death. We pray that the Lord is real and present with you during this time. He suffers when His people suffer. Call out to Him…His yoke is easy. He love you…He loves Ben…He loves Madelyn and He loves Matt. He died for each of you so that at times like this you can cling to the Hope of Eternal Life promised in Christ Jesus.

    Sarah, your writing is profound. I hope someday you will be able use this ability to write a book that will speak to others suffering on this long and lonely road. Of course this side of Heaven, we don’t know what God’s purpose is and why innocent children like Ben need to suffer. But I do know he has been an inspiration in stamina and your family’s raw love and persistent push for cutting edge treatments provide a real and at times brutal story of the effects of cancer on a family. Perhaps, when the time is right God wants Ben’s remarkable story told.

    Please know our current church and regional prayer group encircle all of you in love and prayer each week. I wish we could do more. In Faith Alone, Sara Burke (Jim, Katelyn, Sally and John Ross) ❤️🙏🏼✝️😘

    “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 if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also.” – John 14:1-3

  15. My heart is broken for you , Ben and the family . 💔Im sorry. We love you ! We are all family on this earth and to hear the pain and anguish and not be able to help is not fair . All we can do is Love . May God hold you in his arms and comfort you .
    We will cherish your sweet Bean always and forever🙏❤️

  16. My heart is breaking for you Sarah. You are loved. Ben is loved. He has mattered to so many. May God give you strength and comfort. I am so very sorry. Love you.

  17. It’s been nearly ten years since we (not by choice) said goodbye to our son. I am so very sorry for the pain he has endured, and the pain you will forever endure. Love never dies though. I wish I had better words than that. Blessings.

  18. We haven’t met- my terminally ill 8yo is seen at CHC pretty often , and I always think of Ben when we are there. I, too, have lost a son- my only boy. He was 12. The pain isn’t describable. But you will find a way to live in it. Somehow. Because your daughter needs and deserves her mom, as much as she does NOT deserve to lose her brother. My mama heart aches in understanding and empathy. There truly are no words.

  19. Dear Sarah , I’m reading your update and I’m in tears !! I feel every bit of pain you are going through right now !! And it’s even more surreal reading your update , because I was at the exact same point with my Leah 4 years ago !!! I just had turned 50 the October before , the age that I had pland to embrace and that was supposed to be the stepping stone into a new phase of mine and Leah’s life !! And then here we were , Leah in hospice and I had to somehow find the strength to watch my child decline more and more with every day !! Watching her in the between stage , hoping she was not suffering and trying to keep her comfortable with morphine !
    I have been watching and following Ben since Leah has been diagnosed in 2012! And i have admired his incredible strength throughout his whole journey! You had reached out to me when I was going through this unthinkable nightmare, when Leah had relapsed and there was nothing that could have been done anymore!
    I wish I could have met Ben and given him a big hug !! I wish I could be there close to you right now! No words can make this any easier or better , but I would like for you to know , I’m here ! I know and I will alway be here when the time comes and you just need to talk about it all , because I know now that only someone who walked in these ugly ass shoes can and will understand this pain !!
    My heart is hurting for you my friend!!

  20. Sarah, you dont know me but I have been following yours and your familys journey. My heart is shattered for your family because I know how hard this is for you guys, but mt heart aches so bad for you as mother. I couldn’t imagine going through that with my babies. Ben has had such a huge impact on SOOOO many peoples lives and he was a true super hero! Please know we are lifting you and your family up in prayers ❤ even tho we dont personally know you guys we love yall.
    ❤ Karla Hendricks

  21. My 14 year old son is one of the many kids Ben did online gaming with. He has talked to me about Ben and even messaged your daughter tonight to ask about sending flowers or a donation to a charity or something. He is genuinely hurt seeing all of this happening to Ben and as a mother, I am so sorry your family has had to go through this. Your videos have touched my heart and made me hold my kids so much closer than ever. GOD bless you all and comfort you.

  22. Ten years ago, my sister died from child-birth complications. The baby lived, but just 3 years later, he was diagnosed with neuroblastoma. Logan died just one week after his 5th birthday. I know that he joined his Mom in heaven and that there’s supposedly a reason for everything, but that certainly doesn’t make it easier. I do not know why, but for some reason Ben’s strength, brought me strength. I have followed his journey for years. I have cried with you and celebrated with you. Ben’s “old soul wisdom” has brought me many smiles as it reminded me of my nephew and his many profound ways of thinking. As you crouch on your knees today, know that you are not crouching alone. Godspeed to you, and may your little man finally fly free.

  23. Sweet Momma. Holding you all up in love and light. I was treated for cancer at 3 and again at 7 and I really want you to know how impossible it would be for Ben to love the quality of life he did without your incredible support. “There are two ways of spreading light: to be the candle or the mirror that reflects it.” You are both. Your light shines so brightly lighting the way for anyone touched by cancer or side effects or grief (grief even when it means grieving for “normalcy”) – and you have also been the mirror that was brave and strong enough to show all of us Ben’s tenacity and the pain and darkness that is illness. You and bennand your family have changed the world in measurable and unmeasurable ways. And what more can we ask of life? Thank you.

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