Mog's been ill. Still not right, but much, much better with a couple of slightly cooler days. And after a not-too-bad day yesterday (no CPAP, minimal oxygen, only three nebs and less than half a box of suction caths), I thought we might be over the worst of it.
Until she went to bed.
I didn't see a time beginning with 12. But I was up to her at 11.40, 1.04, 2.14, 3.33, 4.12, up anyway at 5.15, and up to Amana at 6.06. * It's safe to say I was more than a little tires when our carer arrived at 7.
So we dragged ourselves off to church, where I missed most of the service thanks to a very noisy Mog, and I sat on a green chair feeling very tired and very sorry for myself and really rather blue. I do a good line in woe-is-me. It's not attractive.
And we sang to God, and I realised then I was sitting with dear friend's who would probably give an awful lot to be this tired for the same reason again. And I thought back to the help I've had this past week, from another friend who would swap months of sleep for another night caring for her son. And friends nearby, and friends further away, all of whom no longer have this "burden." And I was ashamed.
This tiredness; I treasure it. In the silence of the night I can smooth wrinkly sheets and smell my daughter's beautiful soft skin, and I still get to make a significant difference to her life by relatively small actions. A slightly awkward snuggle as I wrestle with the nebuliser, shared smiles at a successful suction, the satisfaction of hearing hoarse breathing ease as I find just the right position with just the right balance of pillows and supports. This - this is every bit as memorable and even more important than the Disney trips, the rollercoasters, the Big Moments. Because this is the every day minutiae magnified until not even I can miss it. This is why we are together, how we came to be mother and daughter; this is what I was created for. And there is nothing more important than this.
And so we go home, and I get the working nebuliser (yep, killed the other one), feed tLP and stiffen my own spine to heft her from one wheelchair to another; life goes on and I will welcome all of it.
And then tLP turns around and asks me - mid treatment - "When's she going to be dead?"
And I take a deep breath (and Mog doesn't, but she will again at some point), and try to reassure both girls that she's just poorly. But we've had too many "S/he was poorly....and then" friends this past year, and we're all scarred.
She is just poorly. And tired. And we are managing alright at home, with lots of help and cooling fans coming. So we talk about how, most of the time, getting poorly ends up with getting better again. And tLP asks to make chocolate brownies, and so we do, and this - and eating them - was also what I was created to do. With incredible expanding stomach to protect my daughters from the same fate.
I'm in bed now. Just waiting for the washing machine to stop spinning, so I can yank out anything which needs ironing, and hang it up before our ironing lady comes in the morning. Because here's the thing - yes, I'm tired. But I am not alone, and we have our ironing lady and our cleaner and our mower-of-dead-lawns-and-gentle-lecturer-about-the-importance-of-watering guy. And so there's very very little I actually have to do, beyond caring for the girls. Which is good, because there's very little else I'd rather be doing. God knows what He's doing.
*side note: wish I could remember useful things like sort the blue badges before they both expire next month, fix the printer, find the stapler. But instead I am blessed with the ability to close my eyes and see all the times I was dragged out of bed. Not counting the leaf-on-the-head special cat treatment.
I pray Mog starts to improve soon. I just wanted to say you are so very blessed but also you are an amazing woman. Gods love shines through you. I really hope we get chance to chat together and maybe even pray together at camp this year.
That would be good - Special Kids prayer group? I can think of some others who might be interested in that. Or just head on over to our gazebo; Mog and her Knight are usually rocking the praise music together!
I think a special needs prayer group sounds great. Wish I could join you. But if you text me when you meet I could still be praying xxxc
That sounds great! If we could sort out Internet you could join us by skype, Tina!
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