I longed for the summer holidays to be over so I could attend School for parents. I was desperate for help. I was afraid to leave the house as Ruby could have seizures which made her stop breathing. I regularly had to call for an ambulance. Being a nurse didn’t help me. First and foremost I was and am Ruby’s mum and having a blue floppy child in your arms is beyond description. To add to my fear for Ruby’s health I also had a boisterous 5 year old who wanted to go on summer holiday adventures with his mum and baby sister. I would only go out when accompanied by another adult and with an emergency plan in place. This wasn’t how it was meant to be.
At this point I didn’t even know if Ruby knew I was her mum. I knew there were other families in similar situations to us. Lots of them in fact, I saw them in my previous life as a nurse. I knew they lived near us so where did they go to get help? Again I went back to the Health visitors. There was nowhere locally to refer children and families like us to for sensory and social support. That day I decided to do something about it and enlisted the help of a colleague. Over summer we busied ourselves forming a committee and planning fundraising events to get us to the £5000 required to become a charity.
September arrived and I went to School for Parents at Horton Lodge, near Leek supported by my wonderful Elizabeth a volunteer from Homestart. The two hourly sessions became my highlight of my week. I met a teacher who understood children like Ruby and parents like me. We were taught how to focus on what the child can do and not what they can’t. I started to understand that Ruby couldn’t lead me in her development as her elder brother did. I had to learn how to break down the simplest of things into tiny stages. Like sitting on a chair. When you think about the process there is so much our body and brain does without us realising or appreciating it. This is why the tiniest of achievements is enormous for parents like me.
By February we amazed ourselves having raised enough money to apply for charitable status. The support we had received from not only our friends and families but also the local community was amazing. We called the charity Ruby’s Fund after Ruby, our inspiration. Our focus now turned to setting our aims and objectives and making the dream into a reality.