I met up with some friends today and on the way home I realised that when I talk about Lil Z to others, I very rarely say anything positive. It’s all about hospital visits and diagnoses and things she’s not yet able to do. In the past I’ve referred to Lil Z and I as “every mother’s nightmare” because I know that have a child with profound special needs really is just that.
But Lil Z isn’t a nightmare – in fact, she can often be a joy. And I love her totally and endlessly. Caring for her can be difficult and frightening and involve more worry that I thought was possible, but she also makes me happy, makes me laugh and has only just begun to make me look at the world differently.
Lil Z is non-verbal and developmentally delayed, we have no idea what the future holds for her, and she has spent a good deal of her life so far extremely unsettled and crying, so it can be difficult to identify the good things. However, with the seizure medication taking away some of the screaming and crying and a recent spurt of development making her a bit more aware of her surroundings, QB and I have both begun to really enjoy spending time with her.
Still, we don’t seem to mention the positive in conversation nearly as much as we should. So, here are a few things about Lil Z that make me happy:
1. Her crazy hair. It defies combs, brushes, and gravity. It is thick and long and stands straight up on the top. The only way to manage it is a ponytail on the top of her head, which looks cute at the age of 18 months, but will probably cause a lifetime of resentment later on.
2. Her squeal. For over a year, the only communication Lil Z had was to scream when she was unhappy, in pain, or bored. She has now discovered a squeal, which she does at varying volumes when she’s happy. I hate to admit this is often when she’s lying on the floor watching cartoons, although it can also be when we’re dancing, when she goes into her cot at bedtime, or when she wakes up from a good nap. When you hear it, you can’t help but smile.
3. Her rolling. She can’t sit up on her own, crawl or walk yet, but she can move herself around with a combination of rolling and wiggling on her belly (a kind of commando crawl). Sometimes I put her down on the floor for a roll and the next time I look, she’s half-way across the room. I’m also convinced that at least once she has intentionally rolled to me, which would be a huge developmental milestone for her.
4. Her joy at going to bed. I hasten to add that this doesn’t apply every night, but often when she goes down in her cot at bedtime and gets zipped into her sleeping bag, she is beside herself with joy. She kicks her legs and squeals with happiness. And then she goes to sleep.
5. Her ease of going to bed. Most nights she goes down at bedtime and sleeps through until morning (even if it is very early in the morning). Rarely does she refuse to go to sleep or cry and fuss for long once she’s gone to bed. As someone who loves her child-free time at the end of the day, this is a real gift for me.
6. Her ability to attract fans. All the little girls at Vegemite’s kindy love Lil Z to bits and want to hug and kiss her every time they see her. There are a number of nurses in the Emergency Department who always remember Lil Z and love to coo over her (even though she’s usually cranky when they see her). And there are other people dotted around Brisbane who can’t see her without having a cuddle. I don’t know what it is, but she has an uncanny ability to attract people.
7. Her long eyelashes. She has extremely long, dark eyelashes. The kind supermodels would kill for. They are definitely one of her defining features (along with the hair) as everyone comments on them.
8. As much as she’s a difficult baby, she’s actually quite easy. Yes, there are the days when she is building to a seizure and she does nothing but cry. And there are the days when nothing you do can make her happy and all she does is scratch her ears and fuss. However, there are also a lot of days when she does neither of these things. She can entertain herself for significant periods of time, bouncing in her chair, watching cartoons, rolling on the floor. The other day she sat in her Giraffe Chair and watched while Vegemite and I baked cookies. She’s easy to take shopping because she likes watching the world from her pram. We went to the Breakfast Creek Hotel to watch the AFL Grand Final and she was quite happy sitting on QB’s lap for most of the match (and AFL games aren’t short). So, although there are some hard times, there are some easy ones, too.
These are only a few of the things that Lil Z does that make me happy, which is why I’ve titled this “part 1”. Hopefully I will remember to share these things a bit more regularly in the future.