It's exhausting.
And now Mog is ill. She's been ill for a while, actually. Shortly before the summer holidays began, she started needing her CPAP during the day, started struggling to take proper breaths, finding sitting up for longish periods of time increasingly tricky, oh, and her back is marching into a fine twist. New medications, new treatments, new ways of coping. It hasn't stopped us from doing very much. We've still had a couple of weeks under canvas, still been visiting friends and family, but life over the past two months has been running at a faster rate than normal. And in the past week or so, a good day has been a day when she's had a whole three hours when she's not needed support to keep breathing. That's not great. She's happy, she's enjoying life. But she is tired. Maybe it's fixable, maybe it isn't. I don't know. We have various appointments coming up; perhaps we'll find a solution.
It's taken me by surprise, just how poorly she is. Snuck up on me. I've been busy, arranging life around her new needs, juggling her issues with just getting on with everything else. And it wasn't until we were nearly ready for the new term that I realised, actually, Mog is nowhere near ready for the new school term, and cannot possibly manage a full day in school in the same way she did back in July. So, whilst we're looking for answers, I'm taking her to school myself for a few hours at a time. Something which I've never wanted to do. But something which is now totally right. Not forever; I hope we'll find a more sustainable solution (because if Mog can only manage 3 hours without support in her breathing, I need to spend part of those three hours doing little things like shopping and keeping the house ticking over, and sitting beside her in a classroom doesn't really help with that). But for now, it's the right thing to be doing, and it is good to get an insight into how her school day runs.
It's hard.
Mog's teacher was Goldie's teacher, and on our first day in class, she showed me a beautiful slideshow of photos I'd never seen before, photos of Goldie in school. Beautiful photos, a precious gift (which will be all the more precious once emailed to me so I can use them myself), and a truly lovely thought. But a bit of an emotional hammer as I sat hooking Mog up to the oxygen she's never needed in school before.
For our next project, we combined the colour purple and butterflies to make a lovely name frame for Mog's photo. Again, beautiful. But local friends will understand why purple butterflies might be another hammer.
Another day, a new nurse in class (supporting another child). A nurse who knew us through yet another of our too-soon-gone friends. Another hammer.
All good, all lovely, but every one another reminder of the immense fragility of this life.
But God. Our God is able. Every year we go to New Wine, every year I come to know God in a different way. This year, we thought ahead. We booked our carers in a different way, dividing them up amongst our children to ensure all four (we camp with a friend and her two children) were covered, enabling us as adults to spend time at the feet of God without having also to spend time with children at our feet. Beautiful. Worship. Prayer. Teaching. Coffee. Lovely.
And then two days in, Mog got tired, and couldn't manage the children's sessions, and came to join us instead. And tLP decided she couldn't face the evening sessions - child or adult - and I spent my mornings with God and with Mog together, and my evenings hunched over a radio listening to the services whilst sorting meds and nebs and ventilators and smiling at a bouncy toddler jumping on our lilos.
And I was tired, and I was a little bit grumpy, and quite a lot cross, and resentful of the fact that just about everyone else on site seemed to be having a better time of it, a more fulfilling time, a more intimate connection to God, and here was I, sitting in a tent washing syringes.
And then I stopped grumbling, and just sat and listened, and finally God could speak. And He said that I was right where He wanted me to be. That this life, parenting these children, befriending these friends, walking alongside these people, sharing lives with these families, this, back in the past and right here and now, this was exactly where I was supposed to be doing and there was absolutely nothing more important than this.
We are built to worship God. But what that worship looks like is going to be different for each of us, and different at different times of life. I am a parent, daughter, sister, friend, neighbour. I was created to be this parent, this friend, this neighbour. Jumping up and down on stage with Martin Smith, as our friends got to do, is a fairly obviously awesome way to worship God (even if your trousers do fall down). Picking crusty bits off a manky gastrostomy is perhaps a less popular form of worship. But it's no less valid.
This has been a hard summer. But it's also been a summer where love has been poured out over us. Here we are, "Team Purple" at New Wine. "Extravagant Love" say our adult adult (as opposed to younger generation enthusiastic blonde carer adult) sweatshirts. "I'm God's Brilliant Idea" say Mog and her Knight's. And God has shown this so much. From the stranger standing behind us who stopped to pray. And came back to pray again. And again. Because God had more to say, and more loving affirmations to give. To the speaker who knew exactly what I was thinking. And stopped to tell me I was wrong. And loved. To the strangers who stopped another stranger to run after us (in order to ensure anonymity), and who passed on a large amount of cash to bless us for the work we do. To the artist whose paintings in the gallery were just perfect; completely right for our walls at home.
Love poured out by strangers and friends who worked so hard on Mog's quilt, and who are working now on tLP's. Love poured out professionally, in the form of extra respite just when it was needed most. In battles being taken on by other people, before I've even asked. In solutions being found before the problem has been fully identified.
We are here because right here is where we need to be. I don't understand it all, I can't possibly. But God does. From our week in the sun last October, to a precious weekend in April, to two special weeks this summer, from the perfect bar of chocolate to finding that missing odd sock, and from waking to sleeping and even when I sleep, this is the year of the Lord's favour. His life, for me.
No matter what.
The Year of the Lord’s Favour
Isaiah 611 The Spirit of the Sovereign Lord is on me,
because the Lord has anointed me
to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
to proclaim freedom for the captives
and release from darkness for the prisoners,
2 to proclaim the year of the Lord’s favor
and the day of vengeance of our God,
to comfort all who mourn,
3 and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of joy
instead of mourning,
and a garment of praise
instead of a spirit of despair.
They will be called oaks of righteousness,
a planting of the Lord
for the display of his splendor.
Tia
