The moment our son was born I became a Parent Carer. I didn't realise it at the time, and what followed were many denial-filled months.
I was also mother to my 9-year-old daughter, wife to my husband and employee to my employer, but it was 'Parent Carer' that would and still does define me. Much as I'd like to say otherwise, it is my beautiful, soon-to-be five-year-old son who, more than any other aspect of my life, affects and influences the choices and decisions I make every day. For Alex cannot walk and cannot talk and has extremely delayed development in all areas.
"Do you want to come out tonight?"
"But who will look after Alex?"
"Shall we go to the park Mummy?"
"Will Alex be able to come and have fun too?"
"Have you ever thought about working full time?"
"I don't think that would work."
I try not to be begrudging, and most of the time I succeed. Because he is my son. Because he is gorgeous, cheeky and a delight to be around. Because I love him. But it is exhausting. Of course, being a parent is exhausting for everyone, but adding an extra caring layer can tip you over the edge. In an already busy life of children, school and work, I'm also trying to chase up appointments with hospitals and doctors, and squeeze extra minutes into all activities so that Alex has time to eat, and get dressed. All the while, I try desperately not to think too much about the future, because that's when my head explodes.
Will he ever be able to walk?
How will we move him around when he gets too big?
Will we always be able to accommodate him in our lives? What happens if we can't?
These are not questions I ever think about our daughter, Emma. Those are much easier:
Should she really be playing on the IPad so much?’
Surely that's enough Taylor Swift now?
Isn't it time for bed?
I'm only able to keep going because I can share the load. Back at the start - during the dark time when we were realising that Alex was going to be a child with complex additional needs - we worried about all the possible outcomes for us, both as individuals and as a family. We felt too much pain, and too much guilt, to share him with anyone. This was something we had to deal with by ourselves, we felt that surely, no-one could understand, and no-one could help. People reached out and we pushed them away. It was a very lonely, very scary time, and we couldn't keep it up.
Slowly, we let people in. It was our Health Visitor who provided that first, all important, lifeline - some funding for a nursery place. Alex was a "child in crisis", and looking back, it seems obvious: he was stuck at home with us, being ferried between the school run and hospital appointments, and his only visitors were the Physio and Occupational Therapists. It wasn't right for a little boy.
After much searching, we managed to find a nursery that was positive about us placing him with them. And so he thrived. Alex turned from a quiet, unresponsive little boy, scared of loud noises, frightened of babies crying, into a robust, outgoing, inquisitive one. They took him on and advocated for him. He had specialist seating, standing frames, and trips to sensory rooms. They recognised his needs and they met them. We will be forever grateful.
And us? We began to breathe again. We were able to re-group, and build ourselves a new life – not one we had anticipated, but one that would work for him and for all of us. We had the time and space to create a different family unit.
Our support base is broad because our caring needs are great. It ranges from the obvious (therapists, charities who fund his equipment, his nursery and then his school) to the not so obvious, but equally important - the children who say “hi” to Alex in the street, the people who ask us how we are doing, and who don't forget to include us and him as much as they can in their lives. And SWAN UK. I can never fully express what a wonderful support they are. When we found out that Alex an undiagnosed syndrome and we had no idea where to turn, SWAN UK brought us together with other parents, all of them in the same boat, and we all supported each other, as only people who are in the same situation can.
This week is Carer's Week. It's an annual campaign to raise awareness of caring. 1 in 10 of us is a carer in one form or another. Whether it be an ageing parent, a terminally ill or a disabled child, we all do it. Many more of us will come to it later in life, too, so it's important to remember what support is required in order to keep on caring. It is beyond a challenge sometimes, but often, just knowing that other people care about us too is what stops us falling to pieces.