We recently attended a disability equipment/services exhibition in Manchester called Kidz to Adultz. We have attended it every year now since Amy was born.
One of the unexpected and best things about it is the social aspect. With each year that passes, our network and community grows and becomes more interlinked.
I bumped into a fellow Firefly blogger, charity (PEEPS - HIE) owner, and friend, mum of Heidi, and mum… Sarah Land. We were talking about the complex health parenting journey (or whatever you like to label it) and we were talking about our first visits to these exhibitions.
We reflected on our early days as parents in this world of disability.
We were still in the “wait and see” stages, not having any idea what our futures would entail.
I remember walking around the exhibition and feeling entirely overwhelmed. Surely we won’t need a wheelchair van? Why are there hospital beds with padding on them? Why is everything so medical and mechanical looking? I don’t understand any of this… maybe this isn’t for us.
So other than to look at the Firefly stall (which by this point we already owned ALL of their stuff as it enabled us to use shopping trolleys, park swings etc) it made us feel further alienated, scared and confused.
Fast forward to today, Amy is almost 8 years old.
Our experience here is now entirely different. We see the “hospital looking bed” and say WOW look at the colours it comes in!! We see the wheelchair vans and are impressed at all of the different ramp options and seating configurations.
Pretty much every stall here is relevant to us now… and do you know what? We don’t feel alienated, scared and confused. We feel excited - what great pieces of technology have come here today that could make our lives easier, more fun, safer etc.
Sarah said to me. “What changed for us all?” and this was a great question.
I think the answer is time.
Time is a healer.
I remember being told many times that things would get easier. That we would adapt. That the grief will fade. I remember feeling hot with anger and trying to suppress tears when hearing this. How could anyone know that?
I never expected that we would be the ones needing ALL of the expensive medical equipment. I never thought I would be excited at a hi-lo bath, or a wheelchair accessible easel. But here we are.
We have come so far. With time has come acceptance, understanding, awareness, and so many other things.
There are still days where there are traumatic flashbacks. There are days I just want to cry and can’t understand “why us?”. There are days I wish things could be easier for us all. But we are in a different place now.
We know the future isn’t certain, and Amy has been through more in her 8 years than many will in a lifetime. We don’t take a single day for granted, not even the really difficult days.
I’m not sure life even became any easier, I think we have adapted and became more resilient.
Our life is still packed with appointments, admin, meds, ambulance trips, hospital admissions, the fight for services and equipment, the fear of vital services being withdrawn etc. Amy is heavier now, her equipment is larger and her health needs have increased vastly over the years; and yet all I can think about right now is when our extension/adaptation work is done on our house and she can relax her sore legs in her very own hi-lo bath.
Life doesn’t look how we had planned, and I have learned - never plan!! What happens will happen. All you can do is hope to have your loved ones by your side supporting you along the way, be grateful for every little thing, and to cherish the happy memories you make amongst the chaos.