2 Cor 12v9

Sunday, 13 May 2012

Forwards and Back Again

So much has happened in the last ten days.  I have been to my cousin's wedding and my great uncle's funeral, and to church twice last Sunday, and seen more people than I have for the rest of the year put together. Richard came to the wedding with me, making it our first day together away from hospital this year. The other things I went to with the other children and extended family around me. All of them were tough, but all of them were well worth it.

I loved being able to worship in church at each event. I really miss doing that on a regular basis. It wasn't like normal worship though - it cost a whole lot more this week. Talking with people, singing songs and listening to preaching and sharing from the front while having a background loop playing in my head that says; 'Your son is dying,' is the most expensive kind of fellowship I've ever known.  But after each time, after I'd managed to raise my hands and voice, the peace and real-ness of God that came at the end was amazing.

We also had an amazing meeting this week with about fifteen professionals from all over the north west who are trying to make our desire to spend time together outside of hospital a reality. These people are pulling strings left, right and centre to gather all the equipment and support networks in place so we could bring Scooby home, even just for a visit. We were overwhelmed with the amount of people who are giving up their time and offering costly services just for us. The first step was going to be a few days in a hospice next week, where all of us could be together, but then we realised that because Scooby had contracted a hospital bug (CPC) a few months ago, he wasn't able to go for infection reasons. Still, we had a bed and hoist delivered to the house in Preston, and had a practice run at driving Scooby round the hospital block in our new wheelchair accessible car, so things were in place and ready to go.

Then at the end of the week, his temperature, stools and seizure patterns showed he has another infection. It's not showing in all the tests so they don't know what anti-biotics to treat him with. His oxygen levels keep dipping, and so now bringing him home is looking less and less likely. He'll have a CT scan tomorrow to look for a chest infection and anything else they can think of to find it.

From hope to despair again.

Please keep carrying us in your prayers. Thankyou.

25 comments:

  1. Holding you all close to my heart. Once again I dont know what to say to you because I know, from my own experiences, there are no right words, no words to take the constant fears away. Just to say you are in my thoughts and prayers. xxxxx

    Love Shabbs xx

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  2. JESUS...we adore you
    lay our lives before you...
    how we love you...

    FATHER....we adore you
    lay our lives before you...
    how we love you

    SPIRIT....we adore you
    lay our lives before you
    how we love you....

    ((all i can say))

    love,
    Janie

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  3. We continue to pray for Daniel and for you all to be together as a family. Praying big prayers sending love xx

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  4. Praying Ps 23 over you all, for rest and peace and dancing with God in the storms. There are no words and I don't know you to hug you, but love, hugs and prayers are with you all daily in Spirit. love you xx

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  5. I led the meeting today and spoke on Nehemiah 4. I've written about it in my blog after reading what you've written here. If you care to read it I hope it might give you some encouragement. You are in such a hard place. My prayers are with you.

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  6. I will keep you guys in my prayers. A rollercoaster that is torturous. All the positives quickly changing to negatives. I pray God steps in and heals. I pray for you guys to get time together. Time to be a family. Pray that nothing else gets in the way. Continuing to pray that god will heal and guide doctors to prescribe the correct treatment for positive progress. I admire how you remainconstant in your faith and your ability as a family to remain strong and united. God bless you all. Hugs xxx

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  7. God new you before time begain, God brought Richard into your life God gave you your family in a broken world that started in the garden of eden where sin came in and spoilt ever thing.You have been chosen and special to do this job of looking after one of God children who is Daniel and also looking after Gods other children in your family. There is a plan in all this and one day Esther it will all come together to lift our Saviours name up. Iam praying for you all. The picture of Richard and Daniel together brought me to my knees how Gods love bring you to the place he want us. Godbless

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  8. Praying for you and for little Daniel. Justing standing by your side in prayer and love. God is holding you all tight. He is able.
    Carlos, Deinis and the kids

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  9. Just found your blog so I now know more of the situation I have been praying for. There are so many testimonies of God's healing power which I am sure must help to keep you all strong, but with very natural human emotions running alongside. I can only say I will continue to pray an open Heaven over you all with God's amazing healing power ,His abundant grace & loving-kindness pouring down to do powerful works in all your lives. Scooby "be healed" in Jesus' Name. Christine , (hugs )

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  10. Ever in my thoughts and prayers.
    I've only ever tasted that bitter-sweet of sacrificial praise - and wow, did it hurt, but I understand too the deep sense of unfathomable peace it brings. You are incredible. Keep praising Esther - even in through this turmoiltuous storm - and we'll all help you keep your hands raised and be there right beside, until the victory is won - and remember Daniel wins every which way Gods plan unfolds! Keep holding on. ((hugs)). http://www.youtube.com/watch?v=xGPS8sa-bRQ&sns=em

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  11. Hail Mary, full of grace.
    Our Lord is with thee.
    Blessed art thou among women,
    and blessed is the fruit of thy womb,
    Jesus.
    Holy Mary, Mother of God,
    pray for us sinners,
    now and at the hour of our death.
    Amen.

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  12. Have just read your blog on the advice of a friend. Thinking of you and your family xx

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  13. Words don't seem enough so I offer my prayers.

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  14. jane dale-beaumont5:49 am, May 15, 2012

    Peace and blessings to Daniel and family. x

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  16. Give all your worries to God, for he cares about you
    1 peter v7
    xxxx

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  17. Alec and Joyce Passmore10:35 am, May 15, 2012

    You are all so much on our hearts and in our prayers, and you are such an inspiration and blessing Esther., in the strength that Christ supplies . Our hearts ache for you seeing your precious little boy weakening, and continually pray the Lords strength for you and Richard and all your lovely family.. Love and prayers.

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  18. I was sure by now
    God, You would have reached down
    And wiped our tears away
    Stepped in and saved the day
    But once again, I say "Amen", and it's still raining

    As the thunder rolls
    I barely hear You whisper through the rain
    "I'm with You"
    And as Your mercy falls
    I raise my hands and praise the God who gives
    And takes away

    I'll praise You in this storm
    And I will lift my hands
    For You are who You are
    No matter where I am
    Every tear I've cried
    You hold in Your hand
    You never left my side
    And though my heart is torn
    I will praise You in this storm

    I remember when
    I stumbled in the wind
    You heard my cry
    You raised me up again
    My strength is almost gone
    How can I carry on
    If I can't find You

    As the thunder rolls
    I barely hear You whisper through the rain
    "I'm with You"
    And as Your mercy falls
    I raise my hands and praise the God who gives
    And takes away

    I lift my eyes unto the hills
    Where does my help come from?
    My help comes from the Lord
    The Maker of Heaven and Earth

    I'll praise You in this storm
    And I will lift my hands
    For You are who You are
    No matter where I am
    Every tear I've cried
    You hold in Your hand
    You never left my side
    And though my heart is torn
    I will praise You in this storm

    Though my heart is torn
    I will praise You in this storm
    Written by Mark Hall / Music by Mark Hall and Bernie Herms
    Praise you in this storm - Casting Crowns

    Romans 8:28 / 2 Corinthians. 4:16-18
    Psalm 42:5 / Psalm 121:1-2
    Job 1:20-21 / Daniel 3:16-18
    xxxxxxxxxx

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  19. I cannot begin to praise your strength, and words alone wouldn't suffice. You Esther are a blessing; a role model to a whole world of women, and mothers. I have been praying none stop since the news about Daniel was shared with me and I have to say that reading and re-reading your blog daily has kept me going... Today... I can't seem to stop crying because I feel like I didn't do enough... In the end God knows best... Nothing I say will ease your pain... I simply have no words just prayer and hugs.

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  20. Esther, I am praying so hard for you and your family. I cannot begin to comprehend what you are going through. I pray that God holds you up when you need him. If you ever need anything that I can help with, please tell me. I know I am not close by but that does not matter. I will help wherever I can xxxx love Rachel (harrogatemum)

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  21. We continue to pray, your whole family a real inspiration, we know God holds you all in the palm of his hand.

    Much love and prayers,

    Louise (Doel)

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  22. Esther you are a truly amazing woman. My heartfelt prayers go out to all your family. I can only offer prayer and that I give daily. God bless you all.xxx

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  23. I don,t know you, but I care about your pain, as one woman to another, one mother to another.
    Some times our God is so difficult to understand, but ge has not asked us to understand him, simply to trust him.
    For god, the greatest healing is brought about by being with him, this earth can only offer second best insofar as feeling his presence is concerned.
    However, promise his presence he does, promise his healing he does, and above all he promises that peace which passes all understanding.
    I do not know you, but God does, intimately.
    His love and concern for you is unceasing, he never ever takes his eyes off you.
    You are part of mechristian family, may god continue to envelop you with every thing he is.
    Rebecca

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  24. You’ve been busy lately. With the many things that you have to attend to, I wonder if you have any time to rest. Anyway, it’s good that you have a wheelchair accessible vehicle, which at least makes your travel a lot easier. Stay strong for your kids.

    -Thomas Wright

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  25. You’ve been busy lately. How are you now? It really helps to know that you have friends to support you in times like this. This is just a challenge. Be strong. My prayers are with you!

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