We are not ‘cat people’. In fact, we really don’t like cats. Mostly, because our experience of cats has been neighbours’ pets pooping in our sandpit, in our gardens, and under our clothesline. Or cat fur on our clothes after visiting friends.
The first attempt at a diagnosis that we were given by doctors during the pregnancy was cerebellar hypoplasia, which I think in essence is still true as from my understanding, this just means that the cerebellum (part of the brain, responsible for balance) did not develop accurately. When we searched the Internet for information on cerebellar hypoplasia, we found video footage of cats falling over. Apparently, cerebellar hypoplasia is common in cats, and it causes balance problems.
When Claire was born, the first sound she made, after a moment of worrying silence, was just like a cat. I’m not just saying that. She actually meowed. I asked my sister recently if my memory of this was jaded – had I imagined it to be so cat-like only after we had her diagnosis? She says not. We all heard the distinctive cry.
This continued during our time in the hospital. Nurses in the NICU commented, “She sounds just like a little kitten”. Visitors said the same. I knew about Cri du Chat Syndrome and secretly cringed every time we heard that comment. If it wasn’t CDCS, it still wasn’t a good sign. Claire didn’t sound like a regular baby.
Claire still has a very quiet cry. Don’t get me wrong, this has its advantages, and I honestly find crying babies quite annoying these days! Callum covers his ears and gives a look of disgust when our friends’ babies cry full force. We just aren’t used to it. My mum commented one day that our house was ‘eerily quiet for a house with a newborn’. It was true!
Sometimes Claire’s quiet cry can be really problematic. At home, we can barely hear her awake if we are in the lounge room, if the TV is on at even the slightest volume. I have had occasions where we have been out, and Claire has gotten very agitated, but people around don’t get that she is upset as she isn’t screeching from the rooftops. This is really stressful as a mum and one of my biggest anxieties surrounding leaving her in the care of anyone else. Most recently Claire has decided to combat this lack of sound, by holding her breath and turning blue in order to gain our attention. A great party trick that scares her parents, but also anyone else who is around to witness it (I’m really not selling this babysitting thing am I!! ;)).
A new friend I made whose daughter has Angelman’s Syndrome wrote on her Facebook status about the difficulties of having an ‘angel’ in the house while trying to pack for a move. It sounded so sweet, and made me ponder whether saying I had a cat or a kitten around would have the same impact. Maybe to a cat-lover…but not to me!!
A lesson I have learnt above any other this year is that you look for the good in everything. These days, when I mention that Claire has Cri du Chat Syndrome, I’ll often add that it means “Cry of the Cat” in French, and that it is called this because her larynx is affected by the syndrome and speech can be difficult. I even mention the little cry. I’ve learnt that is sticks. I’ve swung around from shying away from CDCS being associated with cats, to embracing the fact that this is a great memory trigger and that it raises awareness. People remember enough to be able to further research it when they are next at their desk, and that has got to be good.
So, now when I recognise familiar doctors and nurses at the hospitals and clinics I remind them that they have met Claire before by reminding them of the ‘cry of the cat’. It works. One smug know-it-all nurse will never forget about Cri du Chat after she looked the chart over quickly and acted as if she knew all about “Ducati Syndrome” (having not read the ‘cri’ on the previous line). No, she sounds like a cat, not a motorbike.
Some support groups around the world have chosen to embrace the image of a cat in their logo. While some may feel this is offensive, and it isn’t particularly to my taste, I do believe that they have successfully incorporated a memory trigger that if nothing else, will cause people to wonder about the significance of this imagery.
I still hate cats pooping in our sandpit. I’m still not a fan of cat fur. But, I must say, that I am beginning to find kittens a little bit cute. Or maybe just our kitten 😉
I must add here a really bizarre truth. Remember that Claire was named while I was pregnant, and in fact, her first name was the name we had picked for Callum had he been a little girl. I popped Claire Gutke into the wordsmith.org anagram server one day…..rearrange the letters of her name and 772 anagrams are found…and the first one is…. I’ll let you find that out for yourself 😉