My Weak Muscles

It’s been a while!

To be honest, I haven’t felt like writing much – nor have I had the time or energy.

Life found my weak points and relentlessly fired blow after blow week after week until I was brought to my knees, head in hands ugly crying on the bedroom floor encouraging me to think about questions I’ve always totally refrained from even entering my head …

Why Rosie?

Why us?

Why me?

I’d returned from Mt. Kilimanjaro in early October feeling alive, proud, confident, capable with renewed energy and ideas for Rosie. But so many unlucky things happened in those three months to Christmas, that slowly those feelings and thoughts ebbed away until Mt. K and all its mountain power was a distant memory. I ended the year bemused and burned out.

The blows:

• The very day I returned home from Mt. K, Rosie was sick and continued to be ill with coughs, colds, sickness bugs and fevers for seven long, tiring weeks
• We missed every birthday party, declined all invitations, postponed our long-awaited trip to London to watch The Lion King and went into hibernation involuntarily
• By mid-November Rosie took a turn for the worst and we ended up calling an ambulance to take us to hospital where they confirmed she had pneumonia
• Within three days in hospital (although responding well to treatment), she coughed up her milk, aspirated it into her lungs and within an hour was on a life-support machine. She remained in hospital for a further two and half weeks.
• Rosie has now totally lost the use of her left arm and hand, with the right one showing signs of decreased movement too. When the Neuromuscular consultant saw her in hospital he was very concerned. Long and short of it is that this Complex 1 mitochondrial disorder / Leigh’s disease has reared its ugly head again and Rosie needs an MRI scan to confirm what might be going on. There was talk that she may have had stroke which would explain the weakness down her left hand side. We need to wait until she is strong enough to have a general anaesthetic and for an appointment  😦
• A mains water leak was discovered at our property which took forever to sort given it just wasn’t our priority with Rosie ill or in hospital. We had letters through the post informing us that our monthly water bill had quadrupled until further notice (later revoked) and a letter giving notice of legal action if we didn’t get it sorted in seven days from the date of the letter – STRESS – it wasn’t cheap to sort either!
• I got a bladder infection
• My car broke down in the dark, in an unfamiliar place in Wales with Rosie in the back sending me into total panic – it also set me back £900
• The projects at work were piling up – my systems I’ve worked by for years just didn’t seem to be working. I took time off when Rosie was in hospital and was getting further behind, frustrated and overwhelmed
• We were trying to look at schools for Rosie, but Iain and I couldn’t decide on what we thought was right: a special school v’s mainstream v’s home schooling – we still aren’t clear
• I missed friend’s birthday’s, special family birthday’s, anniversaries and I hadn’t even had chance to think about Christmas – despite us hosting this year for the first time ever – something I was really excited about!
• The garden was a state (still is!), the house was an absolute mess (still is!) and I still hadn’t unpacked my bag from the trek (which was a shame, because when I finally did I discovered a pair of dusty, moldy old expensive walking boots – gross!)
• Our diet was appalling and finances diabolical
• I still hadn’t thanked everyone in the way I wanted to for their charity support in 2017 and was feeling so guilty and upset about it – the Bath half marathon, Rosie’s Charity Ball and Mt. Kilimanjaro
• I wasn’t writing this blog or posting many Rosie pictures, my paperwork and emails had stacked up and texts, Whatsapps and private Facebook messages were left unresponded
• I had training courses on the go but couldn’t keep up
• My winter wardrobe was still in the loft so I was shivering until the 28th December
• And then to top it all off, Iain came down with what we thought was a stomach bug in mid-December, but after a few days his abdominal pain got so bad we thought it was appendicitis – we had to call his parents at 6am to get him to A&E. It turned out not to be, but pain relief wasn’t cutting it so by the next day he was up at the doctors being prescribed Morphine. Long story short he was ill in bed for the week leading up to Christmas and did his best to enjoy the day with Rosie despite the pain.

Luckily, Iain and I had agreed not to over-commit ourselves this Christmas like we usually do trying to fit in lots of family visits. We stayed at home knowing we needed to reconnect and spend time together with Rosie. We’d led quite busy and separate lives in 2017 and the distance was beginning to show.

I enjoyed some much needed quiet time in-between Christmas and New Year, but as soon as I had space and time to reflect, that’s when the melt-down happened. The ugly crying, the head in hands, and from nowhere, the questions I just couldn’t rid from my mind…. Why Rosie. Why us. Why me. At one point I even stood outside, holding my hands to the sky surrendering to life, shouting in my mind… ‘ENOUGH!‘.

Rosie and I spent New Year’s Eve with my parents (Iain was playing a gig) and they helped to sort me and my confused head out. Dad drove the 5 hour round trip to pick Rosie and I up from Clevedon (I just didn’t have it in me to attempt a long journey with Rosie on my own again). Mum and dad are always brilliant at listening to me, encouraging and building me up. They treat me to good food (and sherry!) which is always a winner and feels so comforting – I just needed a bit of looking after!

It’s taken some time to re-balance and I’ve come to accept that right now I have no answers as to why this happened to Rosie, to us, to me. But January has started really well, positivity has returned and hope has once again been restored.

There is no time for sadness or getting too embroiled in deep questions when Rosie is happily singing, playing and loving life. Things are what they are for now, so I just need to get on with it and do my best. I’m sure there will time for Q&A’s later.

Enough doom and gloom….I’m ready for 2018 and for all the new challenges Rosie will bring and triumphs we’ll celebrate!

Wishing you, your family and friends a Happy New Year. I hope 2018 brings you much happiness, love, laughter and wonderful surprises.

L x

PS – I’m a little behind but hope to soon share the last posts on Mt. K, Christmas, and lots of other joyful Rosie moments I didn’t get the chance to share last year!

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