’Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light not our darkness that most frightens us’, a beautiful quote by Marianne Williamson.
I love this quote because it challenges and empowers us. It shifts focus onto what we can achieve as opposed to focussing on the different obstacles that life throws at us. And life does throw obstacles when we least expect it. How do we choose to face up to these challenges? Most of the time we have no idea until we are actually in the situation. And then we learn a whole lot about ourselves and hopefully we grow as a result.
Almost 3 and a half years ago life threw a huge curve ball our way and since then my second favourite term came into its own – AFGO (Another F’ing Growth Opportunity).
The story I am sharing centres on my son Jack, though ultimately everyone who meets us becomes part of that story in their own way too.
10 February 2012 I found Jack outside our bathroom door having a seizure which he had never had before and I had never experienced seeing one. 5 minutes earlier he had got up, used the loo, called me for help and then we had started our ‘get ready for school’ routine just like normal. That was the last ‘normal’ day we have had since and our last conversation with him. He was a few weeks shy of 4.
We celebrated his birthday in ICU but sadly he wasn’t conscious for it.
What had happened? Viral encephalitis. When a virus does what it shouldn’t and gets into the brain. Effects range from headaches, seizures, paralysis, coma and in many cases death. The extra tricky bit is you can’t diagnose it. It’s not about which virus it is (there are a gazillion), it’s about where it gets to – the brain. The bit that controls everything. The diagnosis is one of assumption (talk to family and get a history of last few weeks) and elimination (test for everything; then test for everything again – this takes about 3 weeks).
And while that’s happening – manage the symptoms with many drugs, support the body (Central lines, tracheotomy, blood transfusion, continuous monitoring) and wait to see who is stronger. Our darling, perfect, loving, cheeky boy or an unnamed virus that you can’t even see.
Jack won the battle, but the war is far from over. And more than three years down the line we are redefining what that war looks like and what winning really is.
With support from friends, family, therapists and strangers we have supported and loved Jack every step of the way. From coming out of ICU foetal, unable to sit by himself and not eating to now being relatively mobile, eating with a huge appetite and not needing the same medication to control the seizures that have been part of our lives in a way I could never have imagined. We have been blessed to have met some of the most incredible people you could ever imagine meeting, from nurse Julie in ICU who saved his life more than once, to all of the therapists we have seen over the years who love him and listen to me when things get really tough, to the other parents who are in similar situations. Though the days we face look different the emotions are very similar and there is comfort in knowing someone else understands some of what you have to deal with.
Jack has come further than I have despite all the running I have done. He is a fighter. I want to be in his corner for as long as I can, supporting and loving him as best I can. But as the years have passed we have realised that we cannot do this alone.
To this end I started Jogging for Jack. Which has turned into an informal annual fund raiser. I started with a half marathon towards the end of 2012 (that afternoon Jack stood up and took unassisted steps for the first time since he got sick), then a marathon in 2013 and then the Comrades Marathon last year.
This year I am once again running the Knysna Marathon for Jack. But this time with a little twist. Buy an entry for R100 (multiple entries or more donations very welcome), guess my finishing time (around 4hrs) and stand to win some awesome prizes including a stunning vase valued at R14k from highly collectable Plettenberg Bay artist Lucinda Mudge. This may be viewed on https://vimeo.com/91703229. Other prizes include a photo shoot from Jenna Harwood, Wine and honey hampers from La Folie, Herbalife hamper from Sergio Capellino, Disney hamper and a Breakfast voucher from Townhouse Hotel to name just a few.
More info on Jogging for Jack is available here: https://www.facebook.com/JoggingForJack
Buy tickets on http://goo.gl/forms/yma0DMCu7K (Bank account details on the thank you page) or here:
Mr JH Larter
Account # 1329305211
All assistance and support is greatly appreciated.
Written by: SARAH LARTER