We are the Arvos – Dad (Paul), Mum (C), Leo (non-swan, nine), Nenna (swan, eight).
Nenna (her real name is Eleanor Rose when she’s in trouble) loves her iPad, which she’s supposed to use for her flash-communication software when she runs out of signs (she’s non-verbal). She just as often uses it to watch CBeebies. She likes horses, school, make-and-do and anything pink. Her special power is being cheerful despite adversity and she has a wicked sense of humour.
Her biggest accomplishment to date has been getting back on her feet again after foot correction surgery … or maybe counting to four. These are both things no one ever thought she’d manage.
Nenna’s main symptoms to date are:
Progressive Cerebellar Ataxia (wonky brain and therefore wonky balance)
Centronuclear Myopathy (wonky muscles which mean she’s outgrowing her own strength, a bit like a dystrophy)
Global Developmental Delay (Nenna is cognitively about five years old and is pre-verbal though she squeaks)
She’s still doubly incontinent
She’s gastrostomy fed due to having a poor swallow
In real life that means, chest-wise because of her weak muscles, she’s always prone to chest infections and we spend a lot of time in and out of hospital. The weak muscles and Ataxia mean that she can’t really walk unaided and uses a powered-wheelchair to get about most of the time. The Global Developmental Delay (GDD) and the high levels of care mean that she needs a one-to-one all the time in school, though she’s social enough to attend a mainstream primary with her brother.
I think the fact that Nenna is pre-verbal is the thing that affects us the most. We’d love to know what she’s thinking sometimes even though she signs pretty well to get her needs met.
I think not knowing what’s going to happen in the future is the worst thing of all. Some of her previous prognoses (now ruled out) have not had her live as long as even seven. With that hanging over us all the time, you develop the ability to mentally prepare your life for awful plan A: you outlive your child or awful plan B: they outlive you. That’s pretty wearing all on its own, even without any of the symptoms, crises, non-crisis hospital visits and day-to-day care.
We knew things were really going to be different when Nenna started missing developmental goals at about 18 months old. By two and a half she had a raft of specialists ruling out all kinds of ghastly possibilities.
To date, we have 50 medical professionals for various treatments and investigations, including currently inclusion in the Deciphering Developmental Disorders study.
It’s really hard to pick apart the impact of having a child with a life-limiting condition from the extra baggage being undiagnosed brings too. You do get tired with the ‘but what’s wrong with her?’ question and the difficulty in having to fight for everything you need in the way of resources and support. The strain on our family is enormous all the time.
In the beginning (first five years maybe) we got little help, little sleep and lived in terror pretty much all the time. Now we get hospice visits, some respite, help at home, benefits and a social worker. This is a good job because now that C has started suffering with stress related seizures, neither of us can work.
A diagnosis would mean we could plan for the future, but now I try not to think about it.
The best thing so far on our journey has been having a Make-a-Wish trip to Euro-Disney. It was absolutely amazing.
I found SWAN UK through one of our professionals. The main thing I get out of SWAN UK is ‘back-up’ – a similar group of folks who get our crazy life. The amount of friends I’ve got who really understand is really small.
Sometimes SWAN UK is the only place I can vent about the things happening in our life.
Mostly our involvement with SWAN UK is online, but I have been to a couple of meet-ups and one trip. SWAN UK is a place where I don’t feel needy and bonkers explaining what’s going on in our life. In your darkest hours, when you’ve got no help and no answers, SWAN UK can be a lifeline.
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