Thursday, 26 January 2017


Where did that go??

I swear it was not four years ago that I sat in a wheelchair in the special care nursery and heard the words 'facial features consistent with Down syndrome' - and wrote off the next 6 years of my life.

Honestly, I don't think I shared any photos like this at the time - too 'clinical features'! 
What I thought was that I was putting life as I knew it aside, settling for a tough life of hard work and no fun, for at least the next while.

Because, let's be real. If there was a magic pill that would undo the effects of the Trisomy on Chromosome 21 (and it was completely without side effects) we'd grab it, no questions. As far as we're concerned, if Jacinta had a body that worked properly it would be much easier for her true self to shine through, without being hampered by difficulties all the time, which from all appearances is incredibly frustrating. (There's a lot of screaming going on lately. It'll pass....)

So looking back on the past four years, I can see that it's been completely different to what I expected. The first 9 months or so were fairly predictable - it was rough trying to get her fed for the first 3-4 months before the heart surgery and it was hard to live with myself, putting her through it - no matter how much it's for her own good.

Still, those first 9 months were miles better than I expected. I remember when she was going off to hospital without me, waving her little hand, I had high expectations for her. Then when I first saw her in the new hospital the next day, she was in a fog. She was all floppy and sort of bloated, and barely conscious. I really couldn't see who she was, which made it difficult to relate to her. I was expecting a hard slog.

I remember being so pleased during that first week when the Intensive Care nurse who'd been looking after her mentioned that she'd been hiccuping quite a lot, and I was able to say "Yes, she does that a lot." because she'd been doing it all the time in utero. I think that was the first time, during those first few days when the nurses had spent more time with her than I had and knew her better than me, that I really felt like we did know each other and we did belong together.

Then it was a few days later when Maria came to do NAET with Jacinta in the hospital and after a couple of treatments, it was like the lights switched on and she was open for business. At that point I could see she had a sense of humour, which is really all I require in a child of mine - that and a good capacity for conversation.

And now we're here! Where on earth did those four years go??!!

So Miss Jacinta is now about 88cm tall and around 16kg (metric system) and is walking and doing the trotting run that toddlers do. For her birthday she got a balance bike. She has a love-hate relationship with said bike, which is awfully cool and exciting, but seems to buck her off when she's wearing a voluminous dress or no shoes. Work in progress.

This has been a very exciting Christmas. Not only did she choose presents for her siblings and parents (as she always does), but she was able to say who they were for - because she can say all of our names now! My middlest and eldest shall henceforth be known as 'Yaya' and "Eneminee". Not only that, she hid them in her room, wrapped them with a little help (sticky tape) from me when no-one else was looking, put them under the tree herself and - left all the presents alone!!! I couldn't quite believe it but for the first time in many years in our house all the presents sat under the tree for several days and not one was cracked open even a tiny bit!

Her speech is taking off again - possibly due to the hearing device, although she's not wearing it as much as we'd like since it's been a bit problematic with feedback and less effective when turned down. I'm now noticing that the burbling utterances she makes at appropriate times more and more sound like appropriate phrases - and when I get them right (such as this afternoon at the supermarket when she pointed to a favoured grocery item and said "put that one in" i.e. in the trolley) she beams and nods her head and says an emphatic "yes" - with an 's' and everything!

Another milestone - she's worked out how to take photos with my phone. We're now into the 'taking photos of my shoes and bits of Mummy' phase. Her first photo was of the Clown Doctors at the hospital, who highly enjoyed posing for her shots - possibly straining their backs in the process of getting their heads in the frame.

Jacinta is very aware of where she fits in. She wants to be included and most of the time if she's crying in the house suddenly it'll be with her face in her hands, weeping because she's been told she can't play with the older sisters. It's quite a frustration for me to see that since my middlest started school the age gap between her and Jacinta has widened so much, when there's actually a bigger age gap between 1-2 than between 2-3. Frustrating also when one thing I really don't want Jacinta to get used to is exclusion and feeling different. I know it'll come up in the future, but I do like to think that the one place you'll always feel you belong is at home, and being always stuck with your parents is nobody's idea of fun. Anyway, I look forward to getting that crystal ball so I can see how it'll all play out.

Almost every day she's doing something new that we didn't know she could do. The other night her older sister and younger cousin put on an impromptu acrobatics show and she jumped up and joined in with a couple of moves we've never seen her do before - and which are really good for her physical development, so woohoo!

She sings a variety of songs now, including the Peppa Pig theme tune (snorts included) and the song "Apples and Bananas" which just so happens to be the name of one of her  Wiggles DVDs...... (very convenient)

I think my favourite thing I've seen her do lately was on her birthday. Up until this year she hasn't had the puff to blow. Before her recent heart op she had started blowing bubbles in drinks with a straw (and getting in trouble for it) and I'm pretty sure that since the operation she's had more puff than before.

With all my kids who haven't blown out candles before I have done a dry run with a sing of Happy Birthday and then cue them to blow so they know what to do. Every year until now she's not had enough air to get them out, but this year a couple of days before her birthday I did it and she blew the candle out straight away, with no hesitation or difficulty.

It was so sweet to see her blow the candles out this year, not only because she could actually do it and tick off another milestone, but because she took each candle individually and ....out, very very carefully. Thank goodness she only turned four!

It really is amazing to watch Jacinta go about her business. She's still determined to do everything herself, or at least attempt it before getting help. Woe betide anyone who tries to treat her like a baby!
She is very good at estimating danger at certain times - carparks excluded.... She loves opening and shutting the car door, the house door, the bathroom door etc and it amazes me that no matter how quickly she does it (and I freak out slightly on the inside expecting broken fingers), she is actually really careful to ensure her fingers are out of danger each time. I don't know why I expect her to be sloppy and careless - perhaps unaware - but it's in there, and she surprises me often by being very sensible. Maybe it's because she's still so cuuuute!

This is a really unusual sight these days.

And in a few short weeks she starts kinder. She's going in with the 3 year-olds who will start turning four this year. This means she'll start school at six, all going well, which is perfect. She's so ready to get out and make more friends and it's high time she did.

See you in a couple of weeks!

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