Sunday, 15 January 2012


Sometimes, I can be startlingly slow on the uptake.

For four years, I have rubbed creams into this back. Removed and replaced vests and swapped t-shirts for pyjamas and got cross when she wont do it herself, traced the march of her spine from vagely midline to its current very off-kilter position.
And it only occurred to me a few days ago that the Little Princess has never seen it herself. She rubs it, runs her fingers over the squishy bit and says it hurts, patters delicately down exploring the change in sensation from full feeling to anaesthetic, and occasionally finding a rougher spot. She asks me, and I tell her it is her lesion, her myelomeningocele, her spina bifida. The spot where her nerves came out of her body, and the reason why her legs and various other bits don't work so well. She nods, we talk about the difference between her Spina Bifida and Mog's Cerebral Palsy, and we talk about everything she can do and how whizzy she is in her wheelchair and how much I love her and how precious and special she is to me.

And then she snuggles down to sleep, and I pat myself on the back with how efficient I am at explaining these things, and life goes on.

So this time when she asked, I took a photo. I showed her. "That's not my back. Who cut me?" I explain, once again, that this is her lesion, her Spina Bifida, the bit where there was a bag of nerves hanging out of her back. That no one cut her, but the scar is from where the doctors put everything back inside.

She remains adamant. This is Not Her Back. And I think, should I have shown her earlier? I haven't been hiding it from her; I just never thought about the fact she hadn't seen it. And I realise we haven't discussed scarring from her upcoming surgery.

My little girl has a scar on her stomach from where her VP shunt was inserted, and a weepy oozy hole where her gastrostomy lurks. We've counted up the tubes, and she knows roughly where each one of them will be, but I never thought to ask whether they will need to cut her open too. I assume you can't chop a bladder in half without making an incision to insert the knife at least. This time next month, she will have a pattern of holes and tubes on her front, as well as this new-to-her long scar and birthmark on her back. War Wounds from the battle against her broken body. How do I give her a good body image when we're throwing so much time and effort into, and putting her through so much pain in order to patch up and improve that same body?

She has a zip at the back of her neck, a bald patch behind her ear, a permanent record of previous surgeries. Her forehead has a neat white scar - her fringe hides it, but people have been known to ask if she was shot in the head. Nope, it's another battle injury - the pressure sore formed by prolonged use of the only mask suitable for Non-Invasive-Ventilation when she was much smaller. Smaller, more delicate scars cover her ankles; an unsuccessful attempt to straighten her feet. And a long fat scar winds its way down one hip, the hip which is now firmly attached to the leg which has been surgically shortened in order to reduce the risk of it dislocating again.

All these, she knows and accepts. She sees them and does not question them; occasionally likes to hear the story attached to them, but they are just a part of her. They will, no doubt, be added to over the years. Already we have another major surgery lined up for when she recovers from this forthcoming major surgery. But these she can watch growing. She sees the dressing, spots the stitches, screeches as they are removed, and supervises the scabbing over and the new skin forming.

And now suddenly she has been presented with a new picture. The back she strokes so carefully, stretches gently and twists out of achey postures and into newer ones which can't be comfortable, the pudgy squidgy bits with no bone where bone should be, and the fluffy hair bit where no hair should be growing. All this has been known to her fingertips for as long as she has been able to reach behind her. But seeing it has been a shock. We talk about those other children she knows, or knows about, who have Spina Bifida. We talk, once again, about the job nerves have and how her nerves can't send messages properly. And we look at the picture of her back, o I can talk about her nerves and trace a pattern on her back and on the photo at the same time. But "That not my back. Who cut me?" remains her response. And as she sleeps, the nightmares are back, and she wakes up complaining her back hurts.

And it doesn't matter that I think she's amazing, it doesn't matter that God thinks she's brilliant, it doesn't matter that there are hundreds of things she can do. Because there on her back is a giant great scar, commemorating the quirk of development which led to her disabilities. And she'd like to know who cut it.



Claire said...

This book might help, the boy in in has a toy with scars like his too. Could you make one for LP.
Do you know anyone who might let LP see and touch their spina bifida scars?

Ashley said...

Tia, e-mail me ashleywriter at gmail. My graphic artist other half and I would love to do books for tLP about this.

Anonymous said...

This sounds like to some extent it might be a proprioceptive type thing - she literally finds it hard to consider that that is her, in the same way we all do when we first see outselves in the mirror, let alone in photos, as younger children. As she is comfy with, and often does, feel and touch and so on her back... how about setting her up with a mirror at the same time. Two mirrors set up so that she can see her own back, and encourage her to touch and look at the same time. She could even take a pen or something and draw on herself and watch it happen - especially as she has different sensation there, it seems that sort of play might just make it feel 'real' for her. As she is generally comfortable about who she is, and understands mirrors and photos and so on, it seems that translating that into 'this is how my back it' might be surprisingly easy given the chance to look at her back. I guess it's pretty difficult/impossible to know what your own back looks like, and if you mostly see images of people with backs without scars then it's natural to sortof assume yours is like theirs. I wonder if she thinks that other people who fiddle and touch their back have some bits that feel different, or have hair, and so on - not 'just' the ones with SB, but she might just feel that's how 'backs are'. And some of them are (but not all)!

Pink (AKA Lucia) said...

I don't have Spina Bifida, but I was born with hip dysplasia and I have had three surgeries on my left hip to fix this, thus I have a nearly one foot long scar from my groin going to my back. I just call it a birth injury. I also have a scar where there was a large sore from when I was in a body cast for six months when I was about two years old after my second hip surgery. I had my third and possibly final hip surgery two years ago and I feel so much better ever since, and now all that's left is back surgery because I have some back injuries that was not from my birth but from physical injuries which causes a lot of pain at times.


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