It took us about 5 and a half years to realise it. But we are THAT family.
You know every year you see these massive charities campaigns like “Children in Need” and “Comic Relief”, or when you see people avidly fundraising for their local hospital or local charities…
We are that family. You know the ones where the camera focuses closely on the family as they relay every traumatic ordeal of their journey thus far.
I remember growing up and watching things on TV and seeing people with poorly children.
I couldn’t think of anything sadder.
I was fortunate enough to have a very healthy childhood, as did all of my friends. I didn’t know a lot about disability, even less about medical conditions or hospitals.
The most I ever saw of hospital was if any elderly relative was poorly or needed an operation.
I thought hospitals were for older people. Not children.
So when I saw it on TV I would feel grateful and priviledged. It didn’t look like a world I would ever be part of. I would empathise with their stories, well up with tears, even let out a little cry.
Then I’d return to my usual activities and forget all about it
What had happened to these people that they ended up in this situation? Well, it just happens. And as we have learned, it can happen to anyone.
I remember the first time I saw DIY SOS (it’s a show on the BBC where they rennovate/adapt someone’s house, often for someone with limited mobility or high medical needs). Again, I’d feel the heat rush to my cheeks, and I’d well up and feel deep emotion and empathy that these people can’t even leave hospital until something drastic is done about their living situation.
Well yeah.. again, that’s us! *waves emphatically*
This year we were lucky enough to be a small part of Global’s Make Some Noise.
We regularly attend this fantastic place in Derbyshire called Reuben’s Retreat. It is a wonderful place.
It is for families who have a bereavement, or a child with a life limiting/life threatening/life long condition.
When we go there, we meet our people, our new family. A community I never knew existed, one I never expected to become a part of.
We got to cheer on TV presenter/radio DJ Jamie Theakston as he embarked on a 650 mile bike ride from Edinburgh to London to raise money for 100s of amazing deserving charities.
We went a long not really knowing what to expect – what an emotional day it was!
As Jamie appeared at the top of the hill we cheered, clapped, and waved banners and flags.
I squeezed Amy’s hand tight and helped her jiggle her arm to show our support. The emotion caught me out of nowhere, the intensity of his bike ride, the commitment he had made to our families, the solidarity between us all.
This was the world getting to see a snapshot of our lives. It was a platform for us to tell our stories.
Once inside Jamie had photos taken with families, chatted with people, and interviews were done.
I already know most of the stories of the families with us, but hearing them later that week on Facebook really drove home how hard hitting our situations can be.
Stories of parents who will one day lose their child. Parents of children who grieve their child everyday. Then families like us, where the future is this big question mark.
I’m not a huggy person, but I wanted to just hold everyone tight and tell them that no matter what we all have each other and we can get through this. We’ve all come through so much already.
It was a truly surreal week. The following day I was somehow in the city for 5am following Jamie in a media van with Reuben’s mum (Nicola) and my friend Christine.
We did live interviews on the radio. Throughout the week some of my pre-recorded interviews were aired too. All on different stations. I got so many messages from people being astonished to hear me as they drive to work. It was bizarre.
I am not a confident person. But if it’s about helping a charity, helping our family, raising awareness, or talking about Amy – all anxiety is forgotten and I will do my damndest to make everyone proud.
I remember at my old job. There was always a hike for charity to sponsor, always a cake sale in aid of something (usually, ironically, heart disease or diabetes!), football scratchcards, dress up days and so on.
It always struck me as unusual that so much charity is needed. Charity is reliant on the goodwill and hard work of others.
It is a shame to think so much charity fundraising is needed to help keep people and hospitals afloat. It makes me wonder what the wider political implications are of it.
I have seen first hand what this money can do.
One day in the future, Amy will be able to access lodges with a hydro pool, cinema screen, sensory room.. and most importantly… changing places with level access and a hoist!
It’s an actual dream come true for families like ours. There aren’t many “retreats” for us to escape to.
Sadly there isn’t a Reuben’s Retreat in every town or city. Currently she gets to access animal therapy, music therapy, themed accessible days with exciting activities.
These aren’t things readily available to children like Amy and I can’t even begin to describe the level of gratitude I feel with each visit.
Having something to fight for, something to help… it gives you purpose.
Life can often leave you wondering why am I here, what are we really doing.
I realise now that I want to be here for Phil, and Amy, and just everyone. I want to make peoples lives easier and happy. I want to make important family memories. I want to change how the world thinks about families like ours.
I want to tell our story. I am so proud.
They also host coffee mornings for parents. Usually the topics are tiredness, accessibele venues, equipment and so on. I always leave having learned something new, and sat in an environment where we are “normal.” You can’t put a price on that.
Do you ever see those money boxes in McDonalds for Ronald McDonald house? Another thing I’d donate to not really knowing where that money went or what would happen with it.
I now realise just how incredibly important just a few pennies from people can be. When your child is fighting for their life on intensive care and you don’t live nearby.. what can you do?!
You can’t afford a hotel every night. The thought of being apart from your child is unbearable, it’s not even worth contemplating, especially if the worse should happen.
Well now I see the value in those boxes and have first hand experienced the life line that places like this provide to people in a tough situation.
We’ve had social media campaigns to fundraise money for Amy to have a chair she can sit comfortably in that isn’t all about postural support, because she can’t sit on a sofa. It was seeing my child’s image banded around the internet as a “desperate appeal”. It was astonishing how many people wanted to help.
A lot of people in my life will say their work is raising money and ask me which charities I would suggest. I could honestly name off the top of my head, at least 15 deserving places that have helped us directly.
There are so many amazing causes out there that deserve funding and respect.
I never once thought we would be THAT family.
I don’t want our story to be a sob story. I also don’t want us to be the heroes in this.
I just want others to put themselves in our shoes and know that if they can help in any way to make everyone’s lives easier then doing that will be one of the best things they ever do.
My heart does ache sometimes, especially when the reality of our situations become so apparent, but at the same time I have learned so so much, I am so humbled, grateful, and in awe of all of the families we meet. I have met parents and children with a strength they never knew they could have, a strength a lot of us don’t even know possible.
We are THAT family.
People will see the videos and pictures. They will see the wheelchair, the splints, the suction machine, the feeding tubes, the nebuliser, all of it.
But look past that. Look at the smile on my daughter’s face.
A lot of work goes into keeping that smile there and it is worth everything to us.
If you see us, smile. Celebrate with us. Say hi. We’re just like you really.