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.