Blimey, it's been a year. A year since José broke his neck. A year since our lives changed; and yet a year in which life has carried on regardless.
In this post I'm going to focus on the adaptations we have made, but first let's catch-up on the 'normal' things we've done since the last post. Remember Tetraplegia or not, we're a (relatively) young, newly married couple, surrounded by our friends and family, with access to everything that England and her capital city has to offer.
Easter was a staycation for us. We concentrated on catching up with friends, both new and old. We had new friends to dinner and took them on one of our favorite walks - a hilly affair given both boys have tetraplegic injuries, us girls have to keep trim. We met old friends and their newest arrival in a local pub, where we enjoyed chocolate puddings and the baby enjoyed José's warm and steady lap. We went for dinner at the home of other friends (our travelling ramp coming in handy again), and admired their extensive gin collection. And to complete the bank holiday we met up with family for a walk along the old Braintree railway (for inspiration we recommend a book published by Sustrans' - Traffic-Free Cycle Rides).
We also celebrated our second wedding anniversary, for which José arranged for a houseful of daffodils - our wedding flower. We met friends who were over from Germany with their new baby - he discovered a great feeding station on José's lap - before going out for a very long lunch on the Thames Southbank. One word of advice - don't bother trying to get on the Jubilee line during rush hour! We eventually squeezed on and then needed to recover in the pub.
We've made the most of our National Trust membership (José gets a free plus one so we can take carers with us) by visiting Knole Park (deer park), Emmetts Garden (spring garden), Chartwell (virtual tour of whole house) and Hatchlands Park (bluebells) - and sampled the cafes of all. José has been to the Dulwich Picture Gallery with friends, they went twice as they got caught in an evacuation the first time and had to retreat to the safety of a tea shop. We've been to the theatre and the cinema and out for dinner. And a great trip to London's Sky Garden - where wheelchairs get to skip the queue. Life really does go on.
So how has life changed?
Let's start with Jose's body. It's pretty amazing. (I've always thought he's got an amazing bod but now it's scientifically proven). A symptom of paralysis is spasms. They can be a nuisance when they sit him up or thrust him sideways during transfer to bed, but they also maintain muscle tone and as they can be triggered by sensation they sometimes mean he can return my hugs (sort of).
As a runner, José has always been conscious of his weight. He's used to looking race-ready (read emaciated). It's hard for him now when he sees himself (looking healthier) but you've got to stop and think about what the body is doing. When you're sat on your bottom all day a skinny rear isn't a good thing- sure you don't want to put strain on the heart by having a high BMI, but you need padding to reduce the risk of pressure sores.
Then there's the neck. Your lower back muscles work hard to keep you upright, and your intercostals (between your ribs) to keep you breathing. José can't use these muscles so his neck and jaw muscles are compensating. Yes he's developed the neck of a rugby player, but those muscles are pretty darn trim, working hard day after day to keep his head up and his lungs expanding. Why do these things always happen to the fittest people? They don't, only the fittest survive.
José has also had to get used to 'casual attire'. Not previously a man who would go out in jogging bottoms, now they and over-sized tops are the most suitable clothes. And we've both had to get used to cold food as meals take a long time to eat.
How has Bradley changed? At the time of José's accident Bradley was 11 months old. José was definitely the fun one, whilst I the boring disciplinarian. José provided rough play, fast play and belly rubs. Bradley was with José when he came off his bike. He knew something was wrong, raised the alarm and then was dragged away by a stranger. He was brought home and then didn't see José again. Lots of other people came to the house, some stayed an hour, others stayed a week, lots took him for walks but none were his master. Bradley was obviously stressed in this period - he went back to eating shoes, walls, cupboards. And then one day I took him up to the hospital. He waited in the garden whilst I went in. He was excited to see me when I came out - then he went stock still, pointer style, his nose twitching his eyes alert. He recognised José, and went straight to his face for kisses.
Since that day Bradley absolutely concentrates on José's face - where he might grab everyone else's fingers and hands in his mouth, with José it's only his ears and nose (lucky José). I wish we could all be more like Bradley - he doesn't see the disability, or get upset about what might have been, he just loves José however he is.
Bradley can now recognise when José needs a cough, we're working on him barking for the carers attention. He's very protective of José, and attentive to commands when José has treats about his person. He's getting good at walking to heal with the wheelchair and clearing the path of sticks and other hazards. We want to get him properly trained as an Assistance Dog but appropriate training is hard to find.
Play is limited, but with help from the local pet supply store we've found biscuits of an appropriate size and weight for ... a PEA-SHOOTER! José's breath is still weak but the more we play the better it gets and the further the biscuit travels - we're expecting the NHS to adapt this as respiratory training.
And the house? How are we managing at home? Carers are a whole blog on their own, so maybe I will talk about that next time. Needless to say having a stranger living in your house 24/7 takes some getting used to. You'd quite rightly think long and hard about renting a room out to a lodger, so to have no say in the matter isn't easy but is necessary.
We live in a three bed semi-detached house so fortunately had room for a full-time carer (they need a bed, wardrobe, somewhere to sit, and ideally TV and internet) and a box room for my office and the second handover carer. Fortunately it has two reception rooms on the ground floor so by moving furniture around we were able to make one room a ground-floor bedroom. In this room we have a hospital bed (profiling and height adjustable), a gantry hoist over the bed, a wardrobe, two sets of drawers for medical supplies, an over-bed table, a table and two chairs for carers to complete paperwork, and a TV. Plus other homely bits and bobs. And we still need to have room for the wheelchair. We don't have a ground floor bathroom, so José relies on bed baths.
We can just about maneuver him around the rest of the ground floor; a galley kitchen, a sitting room and a conservatory / dining room; with the use of ramps but it's tight and very physical. We've put a ramp in the garden and with the use of a carpet across the grass, some ply across the gravel and a ramp up the steps José can get to the rear patio and BBQ. But it's not ideal.
We could rebuild the ground floor of the house to change the doorways, level out the floors and to install a wet room; but we could never create enough space for us to share a room or give José access to the whole of his house. We also can't move the shops, station or (most importantly) the pub closer, and we can't level out the hill that we live on.
All things considered it makes sense for us to find a new home. We are making do at the moment but we want to find somewhere that will give José freedom both in and out of the house. A place where we can get back to living life together.
I will finish with a little one year celebration. Five things we couldn't guarantee a year ago...
1. José survived!
2. José learnt to breathe without a ventilator and the tracheostomy was been reversed.
3. José can swallow liquids and solids and his PEG has been removed.
4. José came home.
5. José takes control of his care and his life despite a minor brain injury.
Thank you for all your hopes, prayers and support this year - you've got us through.
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