I’m at the nursery collecting Marigold. When I walk into the building I often have a lapse of memory and pause as I work out which child to collect first, then I remember there’s only one today. A preschooler walks past and asks where Clover is and I start to cry. Again.
Over three weeks have passed since I last posted; it’s not flown by exactly but the days started to merge and we no longer remembered how many weeks Clover had been in hospital. Most days brought new progress though: she moved to the rehab ward and the focus was more on getting her moving again rather than managing her illness. The daily physio continued, along with the introduction of swimming in the hydrotherapy pool and meanwhile the rest of us continued our routine of spending alternate nights and days in the hospital along with looking after Marigold.
We started taking her out for trips in her wheelchair: nothing too adventurous, just trips down to the harbourside or to nearby parks. We felt the stares and sympathetic looks the most accutely the first time we went out, and then we didn’t notice it so much. The wheelchair was bloody hard work too; unlike a pushchair, you can’t hang anything off it as it will drag on the wheels. Those same wheels will hit your toes with every step you take too, however carefully you place your feet!
Not long after she moved to the rehab ward, Clover began taking steps towards standing independently. The physio sessions were centred around her favourite games and designed to encourage her to move while focusing on particular tasks such as pretending to cook or completing puzzles. After a day or two of standing with a little help, she progressed to standing entirely unassisted, which was amazing. Her legs and mobility were good enough for short periods of walking while she was held by the waist. Her improving physical health did bring some problems though: she was soon able to shuffle off her bed if the sides had been left down and more than once she snuck out of bed when our backs were turned then got stuck after walking across her room holding onto things.
Alongside her physical rehabilitation, we were also getting used to her being at home again. Three weeks ago, after a couple of quick trial runs in the car, we took her home for the day. It was fantastic having her home but at the same time so hard as she was still needing so much help. She insisted on spending much of it in our bed but we live in a very tall townhouse so spent the day racing up and down stairs responding to various screams for help (dvd had frozen, needed hands wiping, leg is itchy, needs a wee, wants a toy that can’t be found etc etc).
I was a bit worried about how we’d ever cope with her at home, but the following weekend was a bank holiday and she came home for two whole nights. Another week passing meant a lot of physical improvement and it was easier. The following weekend was easier still: she could move around the lounge by herself by pulling herself up and holding onto furniture and she had more stamina for sitting upright in a chair. We were also getting better at assembling and dismantling the wheelchair, although stuffing it into the back of a car with already woefully insuffient boot space is something else.
First visit home – Marigold was so chuffed to have her back
As the weekend home visits passed, we began to think more about getting her home for good. Discussions took place and multi disciplinary meetings were held, but timescales were vague. The main issue was that Clover was going to need daily physio for some time, but other than that she had no real reason to be in hospital. However, outpatient physiotherapy is harder to access: you can’t just be discharged then turn up each day for inpatient services and community physio wasn’t sufficiently resourced to meet her needs.
Just as we were losing hope of getting Clover home any time soon, a meeting was held on Thursday and the outcome was that she could leave the following day and would have daily weekday sessions alternating between Bristol where she was in hospital and Bath, where we live. And that was that! We packed her bags (bags and bags and bags – you wouldn’t believe how much stuff accumulated in her room over the last few weeks) and she’s now at home again.
Life won’t be back to normal for some time: Clover still needs a lot of care and although she’s now taken some tentative independent steps (10 whole ones today!), it’s probably going to be a long time before she’s walking freely and with ease. We will also have to contend with driving to central Bristol three times a week, to a hospital with no parking, and grappling with a tiny wheelchair and a pushchair. We’ve also been warned about the small risk of relapse, a scary prospect which I hadn’t even considered until it was mentioned; fingers crossed her recovery continues without any major setbacks!
And now we have her home, we are thinking too of the other parents we met in hospital: many of them caring for children with debilitating lifelong conditions, children with undiagnosed illnesses who’ve been inpatients for months, the catastrophic brain injuries, the terrifying accidents. We feel pretty lucky in comparison in many ways as so many of them were coping with much worse. Guillain Barre Syndrome is mostly rotten bad luck, but hopefully we can look back on this one day and tell Clover about the time she was in hospital and her legs stopped working for a while…