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.