You're not allowed to work.....
That's what the man from Centrelink (the Australian welfare agency) said to my Bear this week. Effectively, he was telling my husband that he had worked too many hours to claim the carer's pension for looking after our daughter. Now this would be fair enough if we were earning six figures maybe, but we aren't. My Bear works two days a week, maybe three. He is our stay-at-home dad and does a remarkable job at juggling all the appointments, treatments, therapies, schooling etc... that comes with the territory.
As parents, in our specific situation, we are not able to both work full time. One of us needs to be there as a carer for our big girl. As a family, there is so much we simply can't do as a direct result of the Down syndrome.
To be told that you're not 'allowed' to work is simply insulting. How is being a carer for another human being not working? And why shouldn't we be 'allowed' to work just because our child has a disability? This simple minded person on the other end of the phone has no idea what we can and can not do. He has no idea what looking after another human being is about.
Does he know what it's like to dream of travelling the world in retirement, just to remember that you'll be booking three tickets?
Does he know what it's like to plan to renovate your home, only to have it in the back of your mind that the extension probably needs to be converted to a granny flat at some stage?
Does he know what it's like to pray that your daughter finds a good man who will love her for who she is, but know in the back of your mind there's a high likelihood you'll have to parent your own grandchild?
And all these thoughts before she was even a day old.
I do not resent having any of these imposed on my life. Having a child is always a roll of the dice and I wouldn't change our family for all the tea in China. I do resent people in a profession that directly impacts on our well being being completely insensitive to what life with a disability is like.
Don't make it sound like caring for another person is less noble and respected than holding down a 9-5. Don't limit us, or our big girl with your preconcieved notions.