Ain't that the truth!!! I know other mothers with special needs kids will relate. For everyone else - Holy Moley! Usually children begin to explore the world themselves and your interactions become two way. They show an interest in the world around them and as they begin to explore, you feed off their curiosity, and you see the world through fresh eyes and from their interest you can begin to feel a wonder and delight about the simple things in life yourself - as messy and mundane as it may sometimes be to an adult. When you have a child with severe cerebral palsy, things are a bit different. With Kaitlin's "type" it can be very different. She has low tone, which means it takes extreme effort for her to move at all, let alone direct those movements, and then add the mental stuff as well. She is using all of her effort just to try and lift her head up, keep her eyes straight, and do what she needs to with her hands - let alone have cognitive thoughts happening there as well. Very slowly, my beautiful girl is getting there. What is really helping is the input from our extended family. Kaitlin's disability means that because she is concentrating so hard just to keep her body and eyes straight, she has little "apparant" ability to concentrate on what is going on around her. Because of this it is easy to assume she does not understand what is going on around her and "get it". She so does!!!! We have an amazing extended family - to name you all would take ages but you know who you are. To all of you - even if it has been difficult, and you certainly haven't made it obvious to me, Kaitlin is Just Kaitlin. All of you just treat her as one of the gang. You read, sing, play, chat, walk, and teach her bad habits. I don't know, I just see her as my baby and don't see much that different but other people seem to - Bugga! -
It is really exhausting as a mum to be doing ALL of the stimulation when your child seems bored and disinterested, It's not that kaitlin isn't enjoying stuff but because it takes huge effort for her to even show emotion, it can feel like you are flogging a dead horse at times and as a mummy you feel really defeated and uninspired. This is where family come in. Whether it is her great nanna Betty singing, cuddling and doing healings or loaning me books that keep me sane, cousin Elise researching, Nanni Heather reading and singing, poppa j and nanni Wend reading, ear nibbling or propping me up, Helen Tom and kids loving and playing or the Willies making medical appointments and pushing her in the stroller or the McD's buying gorgeous clothes and writing cool letters, uncle G's cuddles, Grandad Chris giving kisses and buying Elmo DVDS and sumptuous bean bags, the Russells and Elleys for all of their support, love, gifts and photos, Nana Russell and Grandad Ray for their unwavering love, support, inspiration and books and dvds, Granny and Grandad teaching about farm life and how to be great people, love from all the Johnstone aunties, uncles and cousins, esp Sammy and Ashley, the open-hearted and accepting love from auntie Heather in Edendale, the stubborness and feistiness she gets from her Daddy and his unwavery faith in her that has helped her survive. This is all what makes Kaitlin Johnstone the little lady that she is and in case I haven't said it lately,I thank you all so much. I have been really slack with the camera lately but here are some photos of KJ with her Great Nan Betty and Her Nanni Heather. You guys have made me the mum I am and Kaitlin the little girl she is and with your guidance and love I feel like Kaitlin can achieve anything. I love you.
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