ON THE COVER “I’ll Keep Fighting For Elise” Real Life
Christie Hermiston is determined to make the world a better place for her beautiful daughter Elise
After a very difficult pregnancy, Christie Hermiston’s daughter Elise arrived seven weeks prematurely in May 2015.
After a month in hospital, Christie finally got to bring her beautiful girl home, but new concerns arose.
“I soon noticed that she wasn’t developing in the same way as other babies,” explains Christie.
“She wasn’t smiling and she didn’t seem to be getting stronger or moving in the same way.
“The consultant said that as she was premature, we should give her a chance to catch up.”
Elise eventually had an MRI scan when she was nine months old.
The possibility of cerebral palsy was mentioned then but a formal diagnosis took a further nine months.
“By then I had done a little bit of research and in my head, I had the worst-case scenario – that was her life over,” says Christie.
“At that time I was in shock and I was going through a sort of grieving process for the baby that I should have had – as a new mother you have very different expectations.
“I’d also had PTSD from her birth and I was still struggling to deal with that, along with a feeling of guilt about her diagnosis.
“Now, I have accepted that the cause of her cerebral palsy is just something we’ll never know and I can’t blame myself.
“The first time I took Elise out in her wheelchair, I cried. It felt like everybody was staring at her.
“Sometimes people can stare and look at her like she shouldn’t be there and that is hard.
“Elise has just started at mainstream school and I heard a lady say, ‘Why would you send a child like that to a normal child’s school?’ I was horrified.
“I explained that there was no reason that Elise shouldn’t attend. Not that I should really have to defend my decision to send her to mainstream school – she deserves her place there!
“Other people might ask
“I try to focus on the positives though I still worry about Elise’s future”
why she was born like that or make comments without thinking or use a poor choice of words. I would just rather that they smiled and asked me if they had questions. Yes, Elise is different but everyone is different, everyone has their own unique aspects.”
Icontacted the charity Scope’s helpline in the early days as I didn’t know where to start and that proved to be such a turning point for me and for us as a family.
“We met people who were in a similar situation, people who could point me in the right direction if I had a question and we made new friends who remain brilliant not only for moral support but also for encouragement.
“You end up constantly fighting the system and to have someone who can say, ‘Have you tried…?’ or ‘Have you spoken to…?’ is a big help.”
“I have found new hope and a new sense of purpose. I write the Elise Smashed It page on Facebook to share experiences and to try and change people’s perceptions and views about disability.
“I want to help parents to avoid the holes that I fell into, to try and support them, to let
them know that they are not alone. I also want to challenge everyday issues.
“Why is it acceptable that I must change my child on the floor because places have no decent changing facilities?
“Why is the school’s disabled car parking space behind a tree?
“How do I do a food shop now that Elise doesn’t fit into a supermarket trolley?
“While I am looking after Elise, I am not working and I’m now living on benefits.
“It is hard to manage, especially as I am now a single parent, too (there’s also the associated stigma to deal with, and the need to constantly explain your situation).
“For example, Elise couldn’t manage the NHS wheelchairs. I found a suitable one for her and it was £2.5k with a six-month waiting list just for the initial appointment.
“Her ‘scoot’ – a low level wheelchair for use around the house which means that we can visit friends’ houses, too – was £500.
“I have spent a fortune on equipment and I know that there are children who are in even greater need for specialist items.
“How do people who don’t have the voice and the fight I have, get by?”
“We have both become involved with the Scope charity. Elise actually opened the Scope shop in Middlesbrough last November, which she really enjoyed, and we had a positive response to that, which was great.
“We’re generally in a much better place now. And I have wonderful support from family and friends, who try really hard to understand and help.
“Elise’s schoolfriends are very, very good with her and I am really grateful for that. I try to focus on the positives although I still worry about Elise’s future.
“I worry about people’s attitudes. There are so many barriers, but I will keep fighting. I want everyone to see what an amazing little girl she is.”
“I’m determined to change Elise’s world for her.”