Along with so many others before me, I am experiencing that place where dreams are not yet lost but are dying, and hope is diminished but still flickering. Where you know you shouldn’t be grieving yet but neither are you allowed to be happy or at all expectant about anything in the future.

Here, in no particular order, is what has happened in quick succession every hour that I’ve been awake since hearing the news:

- Feeling like I’ve been punched in the stomach whenever I see a picture, think of a memory or remember a blissfully naive thought I had last week – and realising how different my world has become.

- Pleading over and over to keep the boy I love so much.

- Wondering why, of all the people in all the world who have pleaded for their loved ones and not been allowed to keep them, I think I should get to keep mine.

- Reflecting on how blessed we are to have had this child at all, and four more besides and realising we already have more blessings than we deserve.

- Looking at his weary shaky body and wondering why I’m being selfish enough to pray to keep him at all when his eternal destiny will look a million times better than this life here on earth.

- Remembering that he’s not gone yet and that God may intervene and that for all we know, he could be getting out of that bed one day and walking around again, seizure-free and healthy.

- Allowing myself to remember the skinny little bright-eyed boy that he used to be, with his shrill chipmunk voice and his excitement for just about everything in life.

- Mourning for all that he’s lost in the last few years and how physically unrecognisable he is now.

- Thinking of all the thousands of voices interceding on our behalf, and of the amazing promises in God’s Word, and allowing expectancy to rise that God can and may choose to heal our boy.

- Wondering how on earth his siblings would cope without him – his best friend, his twin, his DNA buddy and the little sister who is becoming more like him every day.

- Trying not to think about any of the things we’d looked forward doing in the future – from going to Disneyland, to sleeping in the same bed as my husband – because they may not be celebratory coming-home things anymore but a weary second best to the ultimate prize of keeping him.

- Hearing him giggle at funny parts of a DVD even though he’s got his eyes closed because he’s imagining the familiar scene in his head, and thinking how much he is still the boy that we know and love.

- Watching him shake and grunt as another seizure hits him and wondering how much more of it his body can handle.

- Wondering if we made the decision to let him go, what that would look like and which parts of his anatomy would shut down first.

- Feeling terrified at the thought of watching him die.

- Remembering that God is able and may still choose to intervene.

- Wondering why we think we should be chosen for a miracle when so many others don’t get theirs.

And round and round and round it goes in my head, until I get distracted by something trivial, or fall asleep for a little bit, or listen to somebody talk about something else. And then the punching sensation in my stomach hits again as soon as my mind remembers where I am and what’s happening, and off I go again on the emotional rollercoaster of exhaustion.

This is where I need to be: Having faith in God’s power to heal but trusting in His love to make the right decision.

I just wish I could get there and stay there without everything else inbetween. 


  1. Sending you hugs because nothing I say can touch you. I love you Lady.

  2. Oh my friend - what can I say to help?

    I have sat here thinking back over my life, and my amazing four sons. I remember sitting in those 'four hospital room walls' with two of my precious sons. Too hot, starving hungry yet not hungry, willing them to keep going. There was a time when I thought...'I cannot stay in this hospital any longer.'

    I identify with every single word of your blog tonight. I once went to see a shrink (I cant spell phys...phi...oh I just went to see a shrink!) He told me to try to clear my mind as much as possible. I lay back and closed my eyes and thought of everything similar to your blog!! I didn't go to see that man again - he couldn't help.

    Your mind and emotions sound like they are 'see-sawing' - I have spent many years like that...I am told it is 'NORMAL' - first time I have ever been called normal!!

    I remain (virtually) by your side. I will do anything possible to help you - just name it.

    Oh yes, and just for the record, I prayed for you - TWICE...and I will do each day. You know how I feel about doing that but it wasn't half as bad as I thought it would be!!!

    Take care my friend, much love to you xxx

    Shabbs xxx

  3. Thinking of you all. Cat.

  4. Thinking of you all. Aching for you. Hoping for you. From one mother to another, I send you all my love.

    Helen BM XXX

  5. Aching ~ Praying! Daniel, you & your family are never far from my thoughts and prayers right now. Cx

  6. Standing alongside you all in prayer for God's will, wisdom and Arms around you all, for the Spiritual rest in Ps 23 - quiet meadows and gentle streams, the knowing of God's Presence. Hugging you in Spirit,love Rosie xxx

  7. Thinking of you all every day.

    tkb xxx

  8. Have only just been pointed to your blog by a friend. Am praying for you and have shared on our church website. Bless you all. Xxx

  9. My thoughts are with you and your family Esther, sending you love and strength.

    RubyRR xxxx

  10. Constantly praying for your precious little boy - asking many others to do so as well - placing requests on fb - sending emails and texts - praying also for you guys too. Checking on fb for updates and specific praying requests. Praying - pleading - tearfully asking that God would not take Daniel home just yet but that He would miraculously bring full and permanant healing and that Daniel will come home to his family. Sending love, sending hugs and praying without ceasing. xxxxxxx

  11. We have come to love you as a family so much over the past months - you have touched many hearts sharing your story. Every morning we start the day praying for Daniel and often for you as a family. Now our prayers are throughout the day and we are now asking others to stand together and pray for Daniel. We love you guys very much even though we have not met. xx

  12. I believe, as heart wrenching as this is for you all, that grief is a natural process that you have to face, feel and endure. I think it has to be that way for you to come through the other side. No matter what you believe in, you're still suffering the most terrible pain, despite the comfort and faith you have in the next part of his journey. Allow yourself your grief Esther, your a mum who's facing the possibility of losing a child. I can't imagine anything more devastating that. It breaks my heart and wish so badly that there was something we could do, that you will get your miracle, that your other babies won't have to lose their cherished brother and you an Richard your precious boy, I even selfishly that Sam won't lose his friend.

    But as fellow mum I marvel at how you have dealt with everything that has already been thrown at you. You are coping amazingly, even though it doesn't feel that way. But you're allowed to not cope, you're allowed a meldown and to let yourself break down. You won't break completely, because you're an amazing person who knows that you have to be there for Daniel and the rest of the family and because you have your faith. You're an inspiration and a true advocate for faith, even for those of us who don't feel it. As ever if there is ANYTHING I can do, you know where we are.

  13. It must be a strange,scary,unreal and yet so painfully real place to dwell. A place where there is felt such a painful numbness. It is a place where Jesus is, He weeps with those who weep and mourns with those that mourn. A place where no emotion expressed or felt is a contradiction to the other and in that place with you is Jesus.
    You are all in our hearts, thoughts and prayers
    Malcolm & Janine xx

  14. You and your family are in my prayers, this must be so difficult for all of you. May God bless and keep you.

  15. Thank you for sharing your life with us out here, We cannot know how hard it is to share in words what is going on in your heart and head but I want you to know that there is a facebook group of christian Mums praying for you and your family.I speak only for myself but I am absolutely sure that all the Captivated Mums stand with you over there being NO victory here, PLEASE let us know if specifics are needed if not I'm sure we will just pray and pray and pray until God reigns supreme in this situation. God give you all proper rest at night, and all that you need

  16. When you think you've hit the bottom
    and the bottom gives way
    And you fall into a darkness
    no words can explain
    And you don't know how you'll make it out alive
    Jesus will meet you there.

    When the doctor says,
    "I'm sorry, we don't know what else to do."
    And you're looking at your family,
    wondering how they'll make it through
    Whatever road this life takes you down,
    Jesus will meet you there.

    He knows the way to wherever you are
    He knows the way to the depths of your heart
    He knows the way 'cause he's already been where you're going

    Jesus will meet you there.

  17. I was shown this page by a friend of mine. What a blessing He is for showing me. I am praying for you all. I do not know the status of what is going on but please look at this site. I have learned a lot from this man in divine healing. God is good and He loves and he provides Healing. Give Curry Blake a call at 1-888-293-6591
    Bless You!
    Eric Markum

  18. As the godmother of a terminally ill 2 year old, my heart and prayers are with you. Awful, just awful! Praying God will be your strength and support whatever you have to face. Praying that your beautiful boy will be painfree, comfortable, seizure free and know the deep and everlasting love you have for him. Much love xx

  19. You are constantly in my thoughts. Much love to you all. Venetia xxx

  20. My heart goes out to you all with much love and many prayers. xxx

  21. I'm lost for words and heartbroken for you but I want you to know that your extended family have you very much in their thoughts. Sending you lots of big hugs and even bigger kisses. Janet, Gillian and Ian xxx

  22. I cannot express what I feel, may God help you through this difficult time.
    With love, Valmy.

  23. I don't know what the right words are to say, I'll just say, we're praying for your gorgeous boy. God is with you always, I pray that he wraps his huge loving arms around you all. Much love, Laura xx

  24. Praying for you all as are many of my friends. We pray for strength for your family and healing for Daniel, trusting God that He works all things for good. Your faith is an example to all of us and we are really thankful that you keep us up to date so we can be holding you all up in prayer. A song I've found really encouraging is 'When Trials Come' by the Getty's. It's worth looking up on youtube as it tells of the hope that God holds us and helps us, strengthening us through these dark times.

    Love Becky x

  25. I promise you, God can cope with any anger or confusion you throw His way. He can handle our very most extreme emotions, when we can't. And then, despite thinking we'll never cope, with Him, somehow we do. I wouldn't dare to suggest I have been through what you are going through. But I know many who have, and they HAVE coped, with Jesus. Whatever the future brings you, Esther, Richard, I know you'll make it through. Because I know you, and I know our Saviour.
    PS I don't admire people easily, especially people who I know well enough to see closely. But wow guys, I admire you. Your openness and honesty during this has blessed and helped many.Thank you.
    PPS Still praying. xxx

  26. Hello, I found out about your blog from Helen. I used to be friends and neighbors with your husbands' family When they lived in Haiti. I have 7 kids and homeschool. I just wanted You to know that we are praying for you as well as our church family here in Knoxville, Tennessee. God has given me a burden for you and you are constantly in my thoughts and prayers. In Christ Esther Picazo Heneise

  27. Is anything too hard for the Lord? He can do more than we can ask or even imagine.

    Praying for you every single day (and sharing your tears). Have you ever seen that wonderful sculpture of the big hands in the woods by the lake at Keswick? Imagine Daniel lying in those tender hands of God. He's safe, and I'm praying that whatever happens, he will be utterly unafraid.

  28. I'm so sorry. I am weeping with you and praying for your family. I wish there were more that I could do.

    With Love, Diane

    1. Keith has been sending me updates about your family for sometime and I have prayed over this situation for you. I don't have any answers but I know that God understands why He has allowed this situation to happen.

      I have MS, so in that I find that I can relate to others pain with understanding. Perhaps you need to go through this to do the same and help others.

      You don't have to be strong and handle this pain, its okay to break down before God.

      Don't be a hero, God does not expect that from you.

  29. Hi this is the 3rd time I have typed it not sure how to get this to work so if it has appeared somewhere else I'm sorry but here goes again ! I have just woken in the middle of the night after reading your latest news, the thought came to me to say ,lay your hand on scooby and command the spirit of death to leave him in Jesus name then confess all the life giving scriptures over him, Jesus came that we may have life , god didn't give us a spirit of fear, god can do immeasurably more than we can ask or imagine ,by his stripes we are healed etc I'm sure you get the idea , we are in a battle and god has given us a sword , praying for you you are an amazing family facing a battle god bless you and give you his peace , just felt I had to share this as a mum too we never give up , friend of DL x


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