“…and if you can just sign here to say that I have advised you that if anything goes wrong we will do everything we can to save her life”
The casual nonchalance with which you can accept a sentence of that magnitude is quite alarming and yet I did and duly signed my (or her) life away. I know that it’s just procedure and that they have to say this stuff and that the anaesthetist has a very professional way of making you feel like it’s a completely normal document to sign but during the time that your little girl is under the care of said anaesthetist and out of your sight you can’t help but allow it to swim around behind your eyes. Are they doing it now? Are they trying, right now, to save her life while I drink tea?
|Spaced out after my MRI anaesthetic
This latest round of hospital fun has all been planned and non-urgent which is of course easier than the emergency kind. Despite that there is a huge part of me that gets a teeny bit ostrich about the whole thing. In the last month Mojo has had both an EEG and an MRI. Both were performed to try and tell us more about her condition and potentially add information to her diagnosis/prognosis. It’s only when facing that prospect that I realise that actually I have become quite comfortable with her existing diagnosis and prognosis. I feel like I understand it and her and our future. How would I feel if it changed? What do I expect them to say? What is the best (and worse) case scenario?
|My EEG was hilarious!
What scares me the most is that I know the reality of the situation is that when we do get the results back the meeting we have is going to be bleak. When a medical professional looks at a brain with the kind of abnormalities that Mojo’s has, they can only offer their educated and honest views about what we are likely to face and that will be very difficult to hear after two years of nothing but her outperforming the first prognosis. Am I going to be able to re-deal with the same horrors of the initial diagnosis meeting.
My mum believes that I have blocked out a significant amount of my traumatic pregnancy memories and I’m inclined to agree with her especially when specific thing trigger memories I’ve not thought about at all since they happened. Going into the MRI suite today with Mojo was surreal. The last time I was there I was 6 months pregnant with her and today for the first time I vividly remembered talking to her while I laid in the scanner (a very long 40 minutes I’m sure anyone that’s been through one will agree). I told her everything was going to be okay because we were going to be brave and begging her to fight and stay with me. Today I had to kiss her goodbye as she feel asleep and the nurses took her from us. She was going to be brave without me. Then as we waited for her to come out (a MUCH longer 40 minutes!) a song came on the radio (husband can vouch that this is true I don’t just make up this sound tracking nonsense) it was the cover of The Calling’s Wherever You Will Go and it was released about two years ago. It was on a tea advert! The first time I heard it I cried so much I was bent double with the agony of it. Anyway today it came on and served to remind me how far she’d come.
So now we wait. There is no best case scenario and in honesty no matter what the results are it won’t change much as Mojo will continue to be treated symptomatically. The meeting will still suck.
In other more exciting news Mojo has been fitted for a chair to help us at home. It will mean we can play, eat and do therapy together without either my back breaking or her hips dislocating. It’s
mind blowingly difficult to entertain a child with the cognition of a two year old and the body of a 5 month old without serious help and until now it’s been a uphill battle but hopefully this chair will help. God bless the NHS.
Finally a lovely, lovely tale about a wedding. My beautiful cousin got married this weekend and as is the way during the early part of the evening the dancefloor was filled with the children dancing and jumping around and running off all their pent up excitement after a day of best behaviour. I always find it hard seeing children of Mojo’s age in this kind of environment. My mum was holding her and she was watching the children dance and mum, keen to ensure Mojo is not deprived of any experience we can facilitate for her stood her on the dance floor to ‘dance’. I watched and felt heartbroken that she was so limited until one of the bridesmaids saw her and before long there was a crowd of girls some much older than Mojo dancing holding her hands and in some cases on their knees to be the same height as her. It was quite something. Children are so amazing and accepting and give me genuine hope for her future.