Our first born daughter was simply a beautiful mystery for much of her life. From the age of one, we were told that our hopes her delays were due to vision and hearing problems were unlikely. But no one could diagnose what was actually wrong with her. There were some very scary guesses by a range of specialists, and we felt stuck. We had no idea what the future held and couldn't plan for Olivia's future or ours with any confidence. One nurse on one of our many trips to the hospital comforted me as I cried.
"It's like that poem," she said.
"When you have a child, you imagine you are going to Italy, and everyone talks about how great Italy is. But then when you have a child with special needs like Olivia, it's like landing in Holland instead."
I cried: "But I want to be in Italy. I don't even know if we are in Holland. We could be anywhere. We could be in Morocco or in the middle of the ocean." The nurse gave me a hug. I later googled the story Emily Perl Kingsley wrote in 1987, to try and describe what it is like having a child with a disability and took a lot of comfort from it.
"It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts," she wrote.
At its heart, it is about trying to find the good in your child, as much as you want so much more.
It took until Olivia was nearly three before we took a final gamble on Exome sequencing to try and unravel what her mystery was. Thanks to the Melbourne Genomics Alliance, we got our answer. Kleefstra Syndrome. Words I had never heard of before and couldn't pronounce (for the record, it's Clay-ff-strah). And we found ourselves a community online of other parents, and made friends and finally were able to say what Olivia had when people asked, rather than just shrugging and saying "we aren't sure".
So thank you, MCRI for putting us back on the map and letting us find an awareness day that we could celebrate - as bittersweet as that sometimes is.
And funnily enough, that same poem about Holland was on the Kleefstra Syndrome website.
We were in Holland the whole time. And it is beautiful.
By Kate McMahon