Throw out the baby books…you’re on your own

20130416_214211No child comes with an instruction book but for most new parents a good book can get them through those early months. But when your child has a terminal illness, there is no book, no instructions and very little parenting support.

In the four years since Aidan was diagnosed with a rare and terminal mitochondrial disease my husband, Anthony, and I have had to stumble through parenting – creating our own rules, our own instructions. From time to time, we have stolen snippets of information from other parents in a similar situation but for the most part we have just winged it.

I was always envious of friends who sought comfort in books like Robin Barker’s Baby Love or Tizzie Hall’s Save our Sleep, for us there was no book.

Obviously parenting children with a terminal illness is not a one size fits all model – every child is different , every child has a different disease, every child has a different prognosis and every child has different physical and cognitive functions.  Yet among all of this is some commonality. All parents of a child with a terminal illness must parent without a promise of a future, all of us wake not knowing what the day will bring and all of us struggle to meet our child’s medical needs as well as emotional needs while still maintaining some sort of sanity.

I am hoping this blog will give parents of children with a terminal illness a place to seek advice, offer insights and together we can create our own set of instructions.

No doubt there will be weeks when I blog a lot and weeks when life with Aidan is all-consuming and nothing will get posted, for that I apologise in advance.

I am a writer by profession but I don’t dare expect that this blog will be perfectly written. It will come from the heart and so at times it will probably be a little all over the place. For that too, I apologise.


6 thoughts on “Throw out the baby books…you’re on your own

  1. Kylie, you are truly amazing & I am so proud of both you and Anthony! You are both inspirational & the fact that you’re taking the time to write about your experience to help others, only shows how amazing you really are..
    Always here for you
    Jo xo

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