Calling and Falling

We had some really positive days last week with Scooby. Once the neurologists realised that the increased seizures were not to do with poor absorption of his medicines, or side effects of the bone marrow treatment, but of the actual deterioration of the brain itself, they got rid of the softly-softly approach and began hitting him with much stronger anti-seizure medications. So he had times when he was awake and not shaky, and was able to form words more easily again. The highlight, I think, was that he was able to sing ‘The Wonderful Thing About Tiggers’ to his aunt and uncle the night that they left for their missions trip for the rest of the year.

But then he had a couple more days of shaking all the time again, and three nights in a row where he could hardly sleep at all, so there’s still a lot of work to be done in getting the balance right with the meds, and keeping up with the unseen changes in his brain.

We are trying to work out if it will be possible at all to get him home, even just for a night or two, so we can all be together outside of the hospital walls. It’s been four months since he’s been outside, and that also means four months since Richard and I have spent any time together except for hospital swap-overs. We really really want the chance to be family again even if it’s just a little taster. We have no idea how this is going to be possible because Scooby is still dependant on medicines going into his central line, which we can’t do at home, and still needs his sats monitored all the time, and medicines balancing for his seizures, blood pressure, infection levels and many other things. It seems insurmountable at the moment, but Richard is determined to find a way, and once he’s on the case he inevitably finds one.

Apart from the many decisions we have to make at the moment about living arrangements and trying to work out what to do long term for our family’s future, I feel like I’m in the place I needed to be last week – having faith in God’s power to heal but trusting in His love to make the right decision. I know this is because of the many, many, MANY people who prayed for this, and I thank you so much. In the last week, I have had several moments where I felt strongly that God was saying He was going to heal him, but other moments where I felt strongly that we were being prepared to let go of him. Twice – once with Richard and once with me – Scooby began talking about heaven and what an exciting place it would be with all the singing and the fun people can have there. Neither of us had brought it up, in fact, I can’t remember the last time we talked to Scooby about heaven or death at all, but instead of scaring us, it made us feel assured that God must be working on things in Scooby’s mind as well as ours.

I think, as always, we are being reminded that the focus is not on what God will do but on God Himself, and keeping close to Him is more important than knowing the outcome.

On the drive home today I listened to an amazing compilation of songs made for me, and this one just really got me in the gut. It's by Casting Crowns and captures beautifully the amazingness of the God who hears our prayers not because of who we are but because of who He is:

Who am I, that the Lord of all the earth
Would care to know my name
Would care to feel my hurt
Who am I, that the Bright and Morning Star
Would choose to light the way
For my ever wandering heart

Who am I, that the eyes that see my sin
Would look on me with love and watch me rise again
Who am I, that the voice that calmed the sea
Would call out through the rain
And calm the storm in me

Not because of who I am
But because of what You've done
Not because of what I've done
But because of who You are

I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
Vapour in the wind
Still You hear me when I'm calling
Lord, You catch me when I'm falling
And You've told me who I am
I am Yours

Calling and falling - two things I'm getting darned good at. Thankgoodness at the moment that is all we are being asked to do. He does all the rest.


  1. On an entirely different scale, I'm with you on this one.
    Calling and falling.
    And also knowing the support of people praying, I'm so grateful for the people in my life, and those people all around you, supporting you the whole way.

    Love you Esther, thank you for your words, for your example of faith. Keeping you in our prayers.
    Beth xxx

  2. We continue to pray at the start of each day for Daniel and for you as a family also. Reading your blog we are able to pray specifically and now for you as a family to get time at home together as a family. We pray for healing, complete and permanent, we pray for the doctors and nurses caring for Daniel and throughout the day we pray and remember you all. Sharing your blog with our family and friends who are unbelievers we hope and trust will touch their lives in ways we could never do. Sending love to you all from a family in Cornwall

  3. 'As for me and my household, we wil serve the Lord'

    Your words are anointed Esther! I am praying, and as a household we are praying into your family!

    Super massive love and pray!
    Mary-Kate x

  4. For I know the plans I have for you says the Lord. Praying for the fulfilment of those plans as you stay faithful to God in this situation. Truly are you obedient to the command to rejoice always, in all circumstances, even in your Gethsemane. Standing alongside you in prayer, cheering you on, supporting you and loving you Rosie xx

  5. I'm remember vividly walking the tightrope as you are with Livvy. The desire for her to be saved yet the wonder if maybe God was calling her to be free. I also remember the exhaustion of living two separate lives on at home one in the hospital, trying to be mom to all four of my children not just the one in the hospital bed,

    I have no answers except the knowledge that our God is an awesome one. He is there right beside you holding you up through this incredibly difficult time.

    You are all in my prayers.

  6. Esther, you never cease to amaze me. I admire the strength of your faith. You trust God so much it's inspiring. I keep praying for you all and for God to heal Daniel. We know He can perform miracles. God is holding you all so close. I pray He continues to give you strength. I pray that it will also be possible for Daniel to have some time at home. You all need some time together. You guys are just incredible and such a witness for Christ. I admire you so much. You're all in my thoughts and prayers.

  7. This comment has been removed by the author.

  8. Esther if you have a minute and have YouTube on your phone, search Audacious- Still x

  9. Esther - I am praying for you and your family. May God give you strength and peace.


  10. Just LOVE that song it's amazing and so powerful. xx Joy xx

  11. listen to I Will Rise by Christ Tomlin, it is beautiful

    believing x


Post a Comment

Popular Posts