Friday, 13 May 2011

Behind the Child

When I started this blog, I had three children, two living at home and one having just recently moved into a Supported Living arrangement. My first ever post pretty much sums what I thought this blog would be about. Me, the person behind the child. Everyone sees the child (or children); I become the pair of hands behind the child in the chair.

Grandiose visions of glimpses into the inner workings of my mind, as illustrated by entertaining epistles detailing the bits of my life you might not notice, hopefully reaching people in similar positions and possibly educating people who had no idea. You know, your average changing the world type ambition.

Well, I haven't changed the world, although people are kind enough to tell me how I've helped them change their minds, and that's great.

This is sounding like the beginnings of a farewell. It isn't! This is a space where I find I can write out what's on my mind. Post sometimes, delete sometimes, but order my thoughts into print and find that there is, actually, something vaguely coherent buried in the middle somewhere. I'm quite tongue-tied if I'm actually trying to talk - typing (and deleting, and retyping, and cutting and pasting and creating hyperlinks) comes much more naturally.

When I began though; this was going to be purely about me. The girls would be mentioned in passing, to illustrate my points, but this was going to be my space, my place to be prominent rather than simply standing behind them. I like hiding behind the child; the wheelchair is still (just) wider than my hips; I can pretend I'm slender and sylphlike. And the girls are worth watching.

But, inevitably, the girls creep in. How can I talk about myself without talking about the girls? They are my life. We are a family, bound together in love. You don't get any of us unless you get all of us.

And so, you've learnt possibly more than I initially intended about the lives of the girls as well as my life. You've been to hospital with us, you probably now know the pole position in the outpatient's waiting room, you may know the girls' surgeons almost as well as I do; and I've had the joy of meeting people as Tia as well as as Tania, and through blogging and other online activity I suspect I now have more Tia-friends than Tania-friends. Handily though; you do increasingly know the same person, whether I'm a Tia or a Tania to you.

Cute stories about sweet little children are great. Less cute stories about living with tantrumming ex-toddlers are at least real. Medical and Disability related stuff - well, that's a fairly important part of our lives, so you know quite a bit about that too.

And that's where it gets trickier, because around the medical type stuff are issues the girls prefer me not to share. And walking a line between my daughter's need for privacy, and my own need to shout things out to the world is difficult. We have, I think, come to a solution. There are some specific areas of the girls' life I shan't be giving full details about. There are other things happening too, where we may not yet have told the girls the full story. And, if they don't know, how can I tell the world?

Bear with me. I have a point and I'll make it, as soon as I remember what it was.

Our Little Princess has, amongst an increasingly lengthy list of conditions, an Arnold Chiari Malformation type 2/3 (depending on which set of medical notes you read). It's always caused her a reasonable amount of trouble, but lately things have been getting a little worse. She doesn't mind me mentioning the daily vomiting - now better under control, thanks to the lovely people at Helen House and a pile of new medication. She doesn't mind me talking about her tiredness, her increasingly wonky back, her stiff legs, her probable double vision, and her pain. She does object to me talking about some of the other problems it's causing, so I shan't - but will just say, getting up and going to bed is taking an ever increasing amount of time at the moment.

So we've been having tests, and she's been getting a little rougher round the edges, and finally the neurosurgeon has had a look and made a decision, and left us to make another decision, and the upshot of the whole lot is that finally the risks of not operating outweigh the risks of operating, and my baby needs brain surgery.

In language that Little Princess understands, the bit of her brain which has always been a bit squashed has now run out of space, and she needs an operation to give it some more room to grow.

As brain surgeries go, it's milder than some. No one is planning to remove large sections of her brain, no one will be digging through her brain tissue to find tumours. But it's still brain surgery. And it's still a fairly Big Thing, for us at least. Nothing has changed to make the operation any safer for her than it would have been when they decided not to do it earlier.

So that's where we are today. LP's biggest worry is that they will have to put a "tubie" in the back of her hand. My worries are somewhat larger than that. And my God is bigger than all of our worries put together. But still - my baby needs brain surgery.



PMDPeter said...

Ouch, One of those real nightmare decisions or is it. It realy comes down to a simple equation: Quality of Life without against quality of life after the operation. Hopefully they will have explained the reasons for needing to carry out the operation and the best and worst case scenario if they dont, add in the 'always' risk of having an extended GA and there you have it. ( I am waffling again and no help as usual)
Having followed your life for some years now and having met you (unfortunately only the once - just cant seem to find any spare time for a repeat)and chatted online in various forums, I know you have already taken the right decision. You know we are all behind you. We will all be concerned and pacing up and down and nail biting etc when she is in surgery and following her recovery and waiting for the good news at the end. You not only have the support of your own close family, but also your large extended online family and friends.
Hoping you get the outcome that you want and LP needs without too much of a wait.


Anonymous said...

I've recently been watching the Children's Craniofacial Surgery on BBC2 which is based at the JR. The surgeons are absolutely amazing, and I'm sure that they'll look after LP wonderfully!
Praying for you x

Fiona said...

Hi Tia,
I have been reading your blog for ages (and enjoy it so much). I'm sorry to hear about the surgery LP needs. Have you heard of postpals, and would it be worth thinking of having her join for a bit, to help her through? They do such a wonderful job supporting families who are going through a tough time. You can find them at I will be thinking of you all.

Order and Chaos said...

Hello Tia and of course the Little Princess, tahnky uo both for allowing us a glimspe of your lives and the difficult decisions you sometimes both have to make. I shall be thinking of you, praying for you and will of course remember Mog.
Blessings and Prayers

Anonymous said...

Hi Tia

It can't have been an easy decision to make. I hope it eases LP's worsening symptoms.

Do you have a date yet?

Lisa B
Hampshire, UK

Ashley said...

Poor Little Princess, and poor Mummy! Keep us posted, Tia- Lots of prayers coming your way

Sleepwalker said...

I've no idea what to say. So sorry to hear how little one has been suffering with daily problems but also worried to hear about this surgery she must have.

GG said...

Will she have a shunt? My husband had to have one 7 years ago after a cerebral hemorrhage. Has only had one problem since and that was fixed without surgery due to the kind of shunt he has, which can be adjusted with magnets from outside. I told him I will call him "Radiohead". Hope all goes well for your Princess.

Rosie said...

My prayers are with you and LP.

Rosie said...

My prayers and thoughts are with LP and you Tia at this difficult time.


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