Monday, April 12, 2010
At the moment I feel like there are a whole bunch of grey clouds gathering over my head.
Usually, 99% of the time, I am convinced that all of the good things that Ashlea brings to our lives far outweigh the difficulties of caring for her. Things like knowing how to appreciate the little things - a smile, a laugh, a new word - "I NEED a Night Garder Mummy!!". Things like knowing what is and isn't important in life. Things like loving and being loved unconditionally.
But sometimes, just sometimes, the burden of being a 'carer' seems very great. Being a carer is relentless - there is no respite (unless you get official respite) from the routines of caring. Every day there are medications to be given, nappies to be changed, feeds to make up, therapies to do - or not do and then feel guilty about.
At the moment the burden of caring feels heavy. I am Ashlea's carer. Her FULL-ON carer. I'm going to be her full-on carer for the next 20 years or so. And then what? I get to bury my child?
Sometimes it feels like a heavy burden.
Thankfully today in real life the sun is shining and it is still school holidays. Hopefully we can get out and do something fun so I can be reminded again of all the great things in my life.
And maybe for good measure I'll throw in a little retail therapy as well...