They say it takes a village to raise a child. When you are a full-time carer and a parent this statement is never truer.
My daughter is now 14 nearly 15 at the time of writing this. She has grown up to a dad with Parkinson’s Disease and a mum that cares full time for him. I became a full-time carer when she was 5 years old.
She knows no different than this life she was raised in. She has missed out on a lot, family outings, holidays, and other family things. But she doesn’t complain, she accepts, she grows up, she adapts. She is so used to this life that she is currently thinking of going into neurology specialising in Parkinson’s when she finishes school. She wants to find that elusive cure.
At her age I was thinking, hairdresser, dancer, and whatever else we believe we want to be at that age.
As a parent of a child that has grown up in the shadow of a disease that impact every avenue of life, it is hard not to feel like a failure sometimes. You miss out on a lot of first as other family members have been there. As much as you appreciate your village stepping up it doesn’t hurt any less that you missed that first trip to the beach for example. It is a trivial thing but its still a big thing to you.
The last holiday we took was when she was in 5, it was just before hubby had to give up work. That’s 10 years of missed experiences. You try your best and do the little things, like berry picking at Christmas while you have a carer to fill in for you. These are still done on a we need to be back before this time.
I treasure these day trips as it’s the closest I get to mother/daughter time. She is getting to the age that mum is losing her cool status after all. Even just going out for lunch together is a blessing.
When a parent and a carer, you need to rely on your village to step in when you can’t, mine take her for holidays that I can’t. If she needs to get somewhere and I’m unavailable, they are her taxi. Her brother takes her to the movies.
I can’t express how grateful I am for my village, that even though I can’ always be there, I know that my village will be. That even though I can feel failure I also know that I’m not, that I have raised a smart independent daughter that will make her mark on the world no matter what she decides to do.