By Emily’s family

Emily turned 13 recently. No bells and whistles, no fanfare or giggly teenagers over for a party. It does make me sad that the end of her childhood wasn’t filled with friends and the like, but I never dreamed we would get this far.

We, her parents and siblings, gave her a cake with candles, sang happy birthday, and then she surprised us all…she blew her candles out, by herself! We did not know she could do that. That makes the nine years of teaching her to blow through a straw into a cup of milk all worthwhile; we did this to support her speech as she is non-verbal. It proves a point that we must never under-estimate her intelligence: we must always strive to get the best out of her even when we think we will never succeed.

Emily is now in high school in Canberra; we moved from the South Coast when she finished primary school because we were not certain that she would have enough options for quality secondary education where we were living in New South Wales.

I can never repay the special educators in our old primary school, which set the pace for Emily’s greatness. They thought outside the box and some days pushed her until she cried to learn the basics. She is toilet trained despite the doctor saying she would be incontinent all her life. Doctors also indicated what we had to look forward to: she would not effectively communicate, walk, see or do much of anything significant. Emily lets us know in alternative ways what she wants. A psychologist said she has no IQ. Emily plays fruit ninja better than me on the ipad. She has learned to swim, walk and run. A bit awkwardly…. but it gets her around. They said many things…. I’m glad I didn’t believe them. That all seems a lifetime ago now. I am pleased to say I have met doctors now who are more open minded and think before they speak.

Through association with Tuberous Sclerosis Australia I was able to navigate the myths about my daughter’s care and break new ground in teaching others about caring for her.

My girl with TSC is amazing, funny, cheeky, thoughtful, loving, caring, generous with her smile and laughter, beautiful, kind and cunning as a rat.

Emily has many serious complicated medical issues and each day she is with us is a blessing. She has run out of options with medications for seizures but trialling a high fat diet (mimicking the Ketogenic diet) is keeping her from total ruin. All her tumours and tubers are deemed virtually inoperable because of their location in her body at this stage. We continue to do the baseline studies for surgery in case an emergency would make it the only option we would have to save her life. You can live with multiple tumours in your body if they are not causing life threatening situations. We don’t think in terms of life expectancy; we take each day as it comes. Our family values the time we have now with our beautiful teenage girl.

Puberty at the moment is our biggest challenge. The “monthlies” are pure hell with seizures, mood swings and meltdowns. Emily is about to have an inter-uterine device (IUD), which will hopefully make life for her a little easier. As if it isn’t hard enough already!

Our plans for the next five years are to get her ready for adulthood. Post school options are already worrying me. I am looking forward to the NDIS as I can see that this will support her better than the current government model.

Our long-term goal is for Emily to be the best she can be: that, my friends, is only limited by our imagination. If I can imagine it she can do it. She inspires me.

Emily