At bedtime, when she is at her most adorable, she likes to talk about what is happening next, the next day, the next week, or more often the next party. So tonight when she asked me to tell her what was happening next I led with the fact that she would be seeing her Granny and that it was because Mojo was going to hospital for a little operation. I told her it would be a busy and fun week, happy with that she went off to bed.
Ten minutes later she was shouting for me, crying and distressed.
'What's the matter baby?'
'Mummy....I don't want Mojo to go to hospital I want her to stay with me at home'
Never has a sentence uttered by a two year old nailed how I'm feeling so exactly.
Only after I'd told the story of when she was born (at a hospital) twice did she settle and accept that there was nothing to worry about. I must have used every possible derivation of 'don't worry' during my talk down.
Then I sat, with wine, and I started writing this.
God I hate surgery. I hate everything about it. The pre surgery meeting when you get five to seven minutes of face time with a consultant who has a way of phrasing things which makes you forget every question you had or that asking them would be ridiculous.
I hate the build up, I get almost manic. Honestly, if you want something done ask me a few days before an operation and I'll have it done within the hour. The decking in our garden has needed a clean since we moved in four years ago and today I jet washed it, then I repotted six bedding boxes and batch cooked two meals.
I say all of this in the knowledge that we have had it incredibly easy compared to many parents of children with complex disabilities. This is only her third general anesthetic and it's officially an uncomplicated surgery. My problem is that I spend my whole life managing the factors which regulate her and keep her alive and I don't like having to surrender that control. Before we even get to the surgery itself there comes the nil by mouth period beforehand. Thanks to her Diabetes Incipidous, it goes against everything I know about keeping Mojo alive to deprive her of fluids. Even in a carefully managed, clinical setting it just makes me edgy.
Then of course there's the consent form to sign, in all it's terrifying we-promise-to-try-and-save-her-if-it-all-goes-wrong glory.
But in the end it has to be done.
Tomorrow I will hold her while she goes under and be there when she wakes up, and in the period between I will pace, drink tea, pray and check the flashing pager every thirty seconds (yep like the ones in the M&S cafe except at the end you get the feeling back in your body, rather than a cheese panini)
All of this build up, adrenaline, fear and disruption is a reminder of how un-normal our life is sometimes. It also served as reminder to me of how dark my sense of humour can turn at points like this. I recently had a message from a friend asking if we could visit this weekend, I rushed out a reply saying that it would depend if Mojo recovers well. 'If she does, we will be there' I wrote. Except I didn't and in fact when I re-read it, the message I sent my friend said 'if she dies, we'll be there'. I swiftly followed it was some expletives and an explanation but it really made me laugh. Which obviously then made me feel agonisingly guilty.
The other thing I need to be wary of in relation to procedures like this one is pinning all my hopes on it being life-changing. This adenoidectomy should assist Mojo with her breathing, swallowing, excess secretions and even her eating. If it is able to achieve even half of what we've been told might be possible it would be amazing. If it improves her sleep that would be life changing not only for her but for us. All previous life-enhancing procedures have brought with them new problems, different challenges to adapt to so I await the curve ball which will appear once the dust settles this time around.
While this update is heavy on the self-indulgent angsting the last few weeks have also brought with them some of the best proper family times we've ever had. Not least of these highlights was the weekend we cared for the school baby chickens. I made a bit of a mini vlog mostly because my family were astounded that I, being reasonably pet-phobic had agreed to care for 9 chickens in my kitchen and wanted to see how I coped! Follow You Tube link to witness our pet prowess...
Click Here for Team Mojo's Chicken Adventures
Oh and P.S. say one for us tomorrow if you're so inclined.