Saturday, October 13, 2012

So, I've just finished reading what I wrote yesterday and it got me to thinking, I've talked about how hard it was and have neglected to talk about the good times, is that because when I look back all I see is a negative experience - MOST DEFINATELY NOT!!!! And it also made me wonder, have things got easier over the years - yes and no.
I wanted to start by saying the early years with Caitlin were hard, not a question but were they bad, no they were not. I had the most divine little baby who, once we got her medicated for epilepsy and let her brain settle down, was the most loving, most giving and most adorable babe I had ever seen (well that was until the arrival if Grace, Tom and Molly. I do have to say my kids are all VERY cute.)
Legs and I made a very conscious decision that we were going to live a " normal" life. We were not going to let Caitlin's Cerebral Palsy define her as a person or us as a family. We were going to let her experience as many things as we possibly could and we were not going to use the excuse that is was "too hard" to have a go at anything.
I think falling pregnant with Grace so soon after Caitlin was the best thing that could have happened to us. Grace put everything back into perspective for us. She stopped us just focussing on the CP and allowed us to experience the milestones and achievements of an able bodied baby. She also made us realise that we had another little person to think about and to let experience this world. We didn't and still don't ever want her resenting her big sister because she had to miss out due to Caitlin and her CP.
With all this in mind, we have been able to achieve some pretty exciting things with Caitlin.
Some of my favourite memories with Caitlin include taking her down the caves on our back just out of Yallingup. She loved the lighting in there. Caitlin has a vision impairment so the dimly lit caves was perfect for her. Legs and I had a giggle afterwards because we have spent her whole life encouraging her to put her head up, something she really struggles to do but down in the caves, there were some really narrow sections where we had to bob down to get through. Because the lighting was just as Caitlin likes it, she kept putting her head up and Legs and I kept telling her to out her head down!!!       Poor Caitlin, I can imagine if she could talk the mouthful she would have given Legs and I that day. Needless to say, after both Legs and I trudged up and down all those stairs in the cave each with a child on our backs, we were exhausted!!! But the sense of achievement that we did it and it was something else we could tick off Caitlin's list was very satisfying.
Caitlin loves being out in the bush. She always has and we always find she is her most relaxed and happy when we are camping or bush walking. I have really fond memories of camping at Sues Bridge with the girls. There is no electricity and you get water out of the Blackwood River. There is a bush toilet only and yes, it stinks and yes, I hated using it and the shower was a quick dip in the river too.
Caitlin didn't stop smiling the whole time we were there. We walked through the bush in the day and during the evening. We boogie boarded down the little river rapid, we painted on canvas, Grace made a fairy garden out of leaves and rocks and whatever else she could find. It is a magic place with some magic memories. Grace still cracks up laughing whe she retells the story of Dad chasing the possum in our tent in his orange jocks!!!
Another memory is getting Caitlin out in the boat fishing down in Denmark or on our holiday with the Lewis's in Augusta. She loves fishing, I'm not so sure if its the fishing she loves or just the sitting quietly with her family and enjoying being outdoors. Grumps is also a big helper of Caitlin's when fishing if he's around.
Ski biscuiting is something we decided to give a go too with our girl. I think we were all a bit nervous about this one but boy were we soooooo glad we had a crack at it. She LOVED it and giggled her head off. We had her in her life vest and I was on the biscuit with her while Legs drove the boat. We couldn't go too slow because otherwise the front if the biscuit tipped down and nearly threw us out so we had to get a bit of pace up to get the biscuit sitting evenly on top of the water.
We have driven across the Nullabor with her and flown to Singapore with the kids. We've followed her Daddy doing the Avon Descent and we've thrown her down every waterslide that will let her.
She has the most adorable and infectious giggle and I love to hear it. She has taught us how to think outside the square and how rewarding a bit of hard work can be. So, was it all bad??? No, not even nearly.

The second question was do I think things have got easier. That's an interesting question and I can't give a definitive answer but I can say some things have definitely got easier and some things have definately got harder.
On the whole, the emotional stuff isn't as heartbreaking now as it was. Having said that, things unexpectantly pop up and throw me into a head spin at times. But generally it's not as hard because in the early days, we had appointment after appointment and Drs always gave worse case scenarios to us and a lot if it was really hard to hear about our beautiful baby. We also didn't know how Caitlin's CP was going to effect her and therefore effect us as a family. There were so many unknowns. Today I know that I know Caitlin and the person she is. I know what she can and can't do, what she likes and doesn't like, what she needs and doesn't need so if a Dr tells me something, I know it doesn't change the person I know as Caitlin. I am also a lot stronger in myself and confident in myself to have my own opinion and not just accept everything the drs say as gospel and most of the time it is me driving the therapy/goal train so I take from the therapist what I need and file the rest away for another day, rather than desperately try and do everything everyone told me to do and in the process burn myself out. Legs is also amazing with helping out and does all of Caitlin's ABR since we've had the babies.
It is also easier because she is at school and has a whole team of people there looking out for her and  fighting for her.
It is easier because the appointments are a lot less now and the therapy is non existent. It is easier because we have a routine that we all know and it works. It is easier because I have a great team of Drs I know are there for Caitlin and I whenever we need them.
It is easier because she has things that we know she loves and things she hates so we're not flying blind so much now. One of the hardest things for her and for us is that she is non verbal and until just a few months ago, she did not have any way of communicating. We are hoping that things will get even easier when she learns to use her communication device efficiently.
It is easier because I have a great support team around me who are happy to help out when things
 aren't going well. I have beautiful friends that can make me smile when I'm struggling.
It's easier because Legs and I have a strong relationship and we know we are a team that can rely on each other to support each other. We have had to work through so much together that now we just "get" each other.
It is harder in many ways too though. It is harder because I feel so let down by The Centre For Cerebral Palsy and the "system". For some reason they must think that when the children start school they miraculously recover!!!!!! All of your therapy and the team of therapists that have been supporting you just abandon you and your child. I know that if I want therapy now, I have to yell, scream and usually  end up in tears before I get a little bit of it. It feels like I have to fight for everything for Caitlin now and this fighting turns me into a person I don't want to be.
It's harder because I have three other children who are just as needing of my time, attention and love but that's not a CP thing, it's just a family of six thing.
It is harder because she is getting bigger and heavier and Legs and I are getter older and sorer and our bodies are starting to let us down, and therefore let her down.
It is harder because I am not working and haven't gone back to full time work since having Caitlin and therefore not earning the super we thought I would be. Full time work requires a very understanding boss to allow all the time off that is required for appointments and illness.
So, when I stop and think about it, I think emotionally, on the whole, I'm a lot more stable than I was in the early years, but physically, it's definately getting harder.


  1. Thankyou for sharing this and being so honest with your thoughts. I can relate to most of what you have said above and often reflect on things seemingly being emotional easier and physically harder! I have three kids with my eldest seven who has athetoid quad cp. nice to "meet" you x Bron, mum to Cooper, Pepper and Elwood.