A New Chapter

Belle's homemade card for her brother

Belle’s homemade card for her brother

After slowly recovering from Calvin’s birthday weekend (EX.HAUS.TED.  NB to oneself – try not to bite off more than you can chew next year) and also absorbing a lengthy telephone call from his gastroenterologist at Great Ormond Street Hospital, I’m going to begin a new chapter.

I have these marvellous ideas to celebrate with a party or to organise an event and then in the middle of the mayhem I have an epiphany, an out-of-body experience where I look at me running around like  a blue arsed fly and wonder why I never do it the easy way and firmly resolve that next time I’m going to pick the easy option. We did have fun though. Ten over-excited  kids arrived on Friday evening with their camping gear. The tent was up in the garden (just) , my daughter had obligingly hung the bunting, the weather was behaving itself and my husband and my twin brother , aka Mr Pyro  (a misspent youth nicking matches and testing them out in woods or wastepaper bins was pretty standard behaviour)  were setting up the fireworks on the village playing fields. So the kids went crazy outside letting off energy and  as I speared marshmallows for the campfire I felt pity for all those teachers about to return to school. We lit the non-edible cake, sang Happy Birthday with Belle tinkling the tune on the piano,  and tootled off in a line to the  field with glo-sticks hung around necks and wrists. The fireworks were pretty good for a fifty quid box. Once home we did some star-gazing and melted the marshmallows over the fire. Some of them (marshmallows not kids!)  ended up bursting into blue flames and blobbing into the fire but that was the only mishap.

At 1130 I got them all in the tent, read the riot act and went inside to clear up the detritus. At 1.30 I’d had enough of the noise and went and parked myself inside the tent . I then “slept” outside in a one man tent  – I’d cunningly hoped my husband would oblige but had forgotten he needed to go to work the next day. Poor planning . Now, canvas and I just don’t go together. It’s just wrong. It’s akin to mixing  hot chilli and sweet chocolate. My two previous occasions camping were disastrous; when Brian and I went camping in the Loire Valley when I was nineteen and a few years ago when we camped in Western Australia alongside the Ningaloo Reef. In France we stayed in a picture postcard campsite by the river but at night it was patrolled by a wolf of a guard dog –  there was no way I was trekking to the loo only to be eaten by a hound. I had the unfortunate experience of kicking the bucket of my pee all over the bedding. We nearly split up that holiday – not good. Oz was a bit sad. We’d been thwarted for the previous two attempts to go to Perth to see my sister because Calvin had been so unwell. After two days of driving we  made it to Coral Bay, where blue meets white on the edge of perfect sand. After pitching the tent on our first day we watched stingrays splashing around our feet in the crystal clear shallows and then went snorkelling. In the afternoon I was preparing food and on stepping out of the tent I tripped over the lip, not the guy ropes like normal individuals, splatted flat and broke my hand in four places. Abandoned expensive holiday, arm in plaster, reacted to codeine and had to call an ambulance, barely saw my sister, flew home, operated on, got pins in my hand, eventually healed. Very sad. Yes I was  a klutz but concluded long ago that I’m a wimp and just wasn’t built for camping.

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I looked at the tent in my garden in the sunlight and thought, “How cosy. What fun. Ooooh, maybe I could do another camping holiday.” When I was in the one man tent in the middle of the night with the damp sides touching me and my back was killing me I then remembered how wrong it is. I sat outside on a bench  like a caterpillar in  my sleeping bag looking at the clear sky and watching for bursts of shooting stars in the still night. That was beautiful but by 0530  the cold had got to me so I gave up and went and crashed on the sofa, only for the little darlings to wake me up half an hour later.

Later on Saturday I sneaked off to bed to catch up on some serious shut-eye when the phone rang. It was Calvin’s consultant from GOSH with his biopsy results. No sign of inflammation, which is utterly fantastic. I know,  I know, then you think ,”well, what the hell is going on? He can’t eat, wants to but just can’t, feels waves of sickness, reflux, pain etc. ” Well, the answer is this; the earlier inflammation from the Eosinophilic Colitis has damaged and changed the nerves in his bowel. His brain still behaves as though the body is diseased and has developed into a hyper-vigilant state, on red alert for any change. It’s as though it’s supremely sensitive, even to the thought of a drink of water and the smell of food in particular, let alone the taste. It’s behaving badly and needs retraining but it’s complex and is going to be slow. It’s now become a functioning, or  dismotility diagnosis, all stemming from the initial inflammation.

As we talked, so much fell into place, a combination of physical and psychological symptoms manifesting in over-reaction or over-sensitivity;  to noise, his extreme pain, his irritability, his anger, his excessive sweating, his prolapses both rectally and from his stoma, his agitation in hospitals, his muscle pain, his body’s sensitivity to the gastroenteritis that threw him so off-balance in May –  I could go on. His body is linked with his brain and the nerve messaging flying back and forth and it’s all messed up and needs untangling. His doctors, and we,  are in agreement with this. Their assessment is that  it’s a complex web of significant medical intervention, the underlying inflammation, the way he processes his illness cognitively and, in part, the way we interact as a family. The brain is an extraordinarily powerful place and it needs retraining so that his body remembers how to function properly again . Calvin also needs gentle teaching so he doesn’t define himself by his illness, I think we need to learn how to take some of the focus away from him and I need to not mirror his anxiety. Easier said than done. That unbreakable bond between a  mother and their child is so hard to step back from and assess unemotionally and logically, but I’ve got to try. I don’t want to turn into a parent that blames everyone, the doctors, the system , myself, the world. I want to be open-minded and to try to understand what’s happened to him and process it with clarity of thought.

We’re going to pay for an experienced psychologist to work with him using Cognitive Behavioural Therapy (CBT) because the waiting list on the NHS at GOSH is so long. The sooner he begins therapy, the sooner we can begin food challenging him. The consultant warned me it’s going to be difficult and slow but  if there is steady progress with his eating and eventually with his bowel that normality can one day return.  They can’t find anything organically wrong with him, which is glorious news, BUT, and it’s a big but, it means his brain and his bowel are in a cycle of pain and illness that needs to be broken. Calvin’s unconscious and conscious thoughts need rewiring and then the hope is that his physical symptoms will lessen.

We’ve  spent all weekend processing this news. It’s a lot to take in but we can both see what’s needed. I started to blame myself, to look at my interaction with Calvin, his unhealthy but understandable dependency on me, my worry that my anxiety about his illness has somehow unknowingly  fed his brain the wrong message. Some of that may be true but I do know this; his Dad and I have tried with every fibre of our being  to cope, to do everything we’ve been asked by his doctors, to normalise where possible, to not over-indulge him, to give him a stable and loving home and  to try to prevent him feeling a victim or an ill child. There’s no manual we can look it up in, you are just being guided by instinct. We try so hard not to screw it up but I’m sure we have done at times. There’s also no future in blaming oneself, step back if you can and look at your interaction but don’t beat yourself up about it.  Sounds so simple when you write it down like that!

Calvin is a funny mix of over-developed intellect and underdeveloped emotional intelligence and, if I’m honest, there’s a sizeable gap between the two. I’ve often wondered how much of that is just him, his personality, and how much has been influenced and changed by his illness. I may never know but I do think we have a responsibility to help narrow that gap, to help redress the balance. Although I dislike the unintended scrutiny of my family and our parenting I think it’s an inevitable consequence of caring for a child with a chronic illness and goes hand in hand with medical intervention. I asked Calvin’s consultant to be honest with me, which he was, but he was also very kind and he said, “This is going to be hard for all of you, Especially for you. It’s always hardest for the parents, the main carers. Sure, you could tweak a few things about how you interact in the home, but this is so complex it needs outside professional intervention. If it’s not enough then we’ll tackle it with more intensity in hospital but let’s try this first.”

My sister-in-law has coped with life threatening food allergies all her life. We talked this all through last night as I know she has a unique understanding into growing up with a serious childhood illness. She shared some psychology with me about a story of a man  who identifies he has two sides to him; two wolves, a fierce aggressive one and the other content and playful. The man is asked about which one  he is and he answers, “The one I choose to feed. That’s the wolf I can control. By not feeding the aggressive one, I know he’s there but he’s in the background and I become the other wolf.”  If we can help Calvin identify the side of him that is the well child, the one that joins in ,the one who runs around, the one who forgets about his physical symptoms, the one who focuses beyond himself then I know we will all be winning.

Thanks for listening patiently, dear Readers.  Happy 9th Birthday, my darling son. It’s time to begin our new chapter……

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About mumannie123

mum, wife (when I remember), journalist, Queen of poo, self taught allergy cook, totally unqualified nurse, likes to fundraise for research and raise awareness into rare childhood bowel diseases, self-appointed expert on accessing education and healthcare for my child, wants to signpost for others who may be struggling, thinks her jokes are funny even if no-one else does.

Posted on September 2, 2013, in Emotional rollercoaster, Eosinophilic Disorders and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 1 Comment.

  1. Wonderful, unforgettable birthday! Those are the ones that get talked about for years as the kids get older. Well done you! I do so hope that this course of action will bring success. The story of the 2 wolves is very vivid – fingers all crossed for Calvin, keeping him and you in prayer.

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