Now look at this photo – do you see sadness here? Sickness? Disability?
Or a little boy, proudly showing off a new skill (balancing)?
In the past 7 years I have taken on more than one new role.
I’m a parent AND a carer.
At 7, my beautiful boy has the physical abilities of a 6-month-old; doubly incontinent, severely visually impaired, unable to sit fully without support and is yet to talk.
His life is threatened daily by the seizures that rage like a storm in his brain; my instinct to protect, defend and destroy any threat to his safety makes me a force to be reckoned with.
Parent carers sacrifice our own health, friendships and in many cases relationships.
It is an immense responsibility, and guilt is never far away – am I doing enough?
Can I do more?
It is virtually impossible to find time to be husband and wife, when every moment of every day is consumed with preparing feeds, meds, ordering continence supplies, filling in equipment requests, dealing with appointments…
My husband, Sam’s beloved Dad, is my best friend and partner in crime.
We care for our son as a team.
Sam is our only child so we can devote ourselves to his needs and care completely, without the guilt others face of having to split our time between other children (although the dog often sulks at being ignored).
Don’t let appearances deceive you.
There is so much love and happiness yes, but we are also so very, very tired, and so very worried about the future.
My greatest worry is who will look after my boy when I’m gone?
Who will love him as we do, who will be there to comfort him when the seizure monster is raging?
While I nag J about making sure Sam’s therapy is done as I dash out of the house to go to work, he has to organise housework, calls from school/nurse/therapist/surgeon, and then check with me that particular dates are free in the family calendar.
Caring takes both of us, it is the biggest responsibility imaginable but the reward of seeing our boy happy, safe, achieving his potential and having the equipment he needs makes it all worthwhile.
Being a parent is awesome, but having the honour of caring for this precious little bundle demands everything.