Guest post by Anna from Oxford. Anna works for Scope coordinating our Face 2 Face befriending service in Oxfordshire. She has a disabled daughter, Scarlett. Anna is sharing her story as part of our 100 days, 100 stories campaign.
I’m not sure how many times we have been in hospital over the years.
My eight-year-old daughter Scarlett has a genetic condition which means she can’t produce hormones the body needs to deal with stress, illness or injury. This means a sickness bug is life-threatening for her. She also has autism and sensory issues, which means she doesn’t always realise when she’s unwell, or let us know about it.
Scarlett is going into hospital again for surgery in two weeks’ time, and it’s led me to reflect on some of the things we’ve learned about hospital stays…
Every child has unique challenges
Scarlett’s sensory issues mean she sometimes has extreme reactions to things that might seem harmless. For example, she has always hated having anaesthetic gel (‘magic cream’, in children’s hospital-speak) put on her arm before she has a blood test or an IV tube put in.
When she was a baby I thought it was because she was anticipating the pain, but now I know it’s because the feel of it makes her sick. She actually vomits looking at some creams just at the thought of it on her skin.
Explaining this at hospital can be hard – she has been told many times “Don’t worry, it doesn’t hurt”, but to Scarlett, it really does!
It’s hard work for us, too
I am up almost 24 hours a day when Scarlett is in hospital. During the night I’m often up every hour to comfort her, or help get her to cooperate. It’s difficult to even leave the ward for a cup of tea.
A lot of care is expected to come from us rather than the hospital staff. The nurses do an amazing job, but they are often very stretched, and I can’t imagine what would happen if every parent handed over all their care duties to them.
It is also really expensive! My husband Andrew, Scarlett’s stepdad, often has to take time off work, and there are things like parking and food to pay for. Parents and carers lose their DLA if the person they care for is in hospital for more than a week, and I think this is shocking.
Explaining things can be difficult
It can be hard to explain to Scarlett what’s happening, and particularly why she has to endure so much that her younger sister Heidi doesn’t.
I’m always on the look-out for children’s books about going to hospital that don’t involve ‘getting better’ at the end. I have seen lots about having tonsils out, or a broken leg, but Scarlett’s condition will never go away, which can be hard to explain.
I find the best approach is to be fairly honest and say that the medications, procedures, operations and masses of appointments are there so to give her the best chance of staying well.
…But it gets easier
Taking Scarlett to hospital, and seeing her looking awful, has become less of a big deal over the years, but it is always a reminder of how fragile she is.
When she was born, I remember being scared about taking her home because there was so much to remember. I was so anxious that I even bought a breathing monitor after a scary incident when I couldn’t wake Scarlett up.
Even now, I find myself looking at the doctors’ faces to see if they seem worried, and starting to panic – what if this is the time things don’t turn out okay?
But generally it has been far easier than I thought it would be in those early days. You adapt as a family, and Scarlett is very happy, lively and brave in dealing with the things life has thrown at her.
We’re into the final weeks of our 100 days, 100 stories campaign. Read the rest of the stories so far.