Sunday, 22 May 2016

Surprisingly normal.

I've been neglecting you all, I know!


I've been busy, and busy with things other than Jacinta!

It's funny, the moment she was first potentially diagnosed, a few hours after birth, I wrote off the next five years as years of intense work and no fun.

I'm not sure what I thought, whether I thought that she would be disabled and hard work and magically not hard when she turned 5 or 6 and went to school, or if I just didn't see the fun in the equation, or was just shell-shocked and not thinking clearly.

The thing is though, I spent the first 2.5-3 years of her life taking care of a sick child. There were moments when she was doing well, like the time we visited the paediatrician at about 6 months and she said 'she's just a bonny baby' with a tone of surprise at how normally she was presenting.

There were no decent opportunities to get moving with any intensive therapies, and to be honest she's just kept doing so well considering her handicaps (leukaemia, heart, fluid in the ears) that I haven't felt the urgency to do lots of intensive therapy.

We have two other daughters, my eldest and my middlest, who were 2yo and almost 5yo when she was born. Doing my eldest's 5yo birthday party with 19 attendant princesses and one prince while Jacinta was in intensive care was quite a business! Got it done though, with help from some kind family, friends and acquaintances.

These other daughters have spent the last several years existing with less attention from me, either because I physically wasn't there, stuck in hospital, or because I was constantly thinking of other things we needed to be doing. Then I got burnt out, starting late 2014 and it didn't go away for a whole year, so I decided it was time to address it. I quit everything and gave myself a break.

Still, this is a byproduct of having a sick child, which is partly due to the chromosomes, but could just as easily not be. I've got my wick back, but am determined not to burn at both ends, since we all know how that one goes. My husband is working interstate again, like a few years ago, so there are limits to what we can do but I can write things on the calendar in pen and actually made it, as planned, to visit my dear friend in another state for the weekend, no kids in tow.

There are still things happening which are fallout from the past three years' craziness. My eldest was a little slow in getting her backwards letters and numbers sorted, which was ok in Prep but is not cool in Grade 3. I've started working with my sister who is a behavioural optometrist who very kindly sees us once a week and give us exercises to do.

My middlest reported to me with what seemed to be a broken tooth. As a background, she's had some teeth issues before which I considered a close call, but she's been diligently brushing since that time last year and we weren't due back to see the dentist yet.

The broken tooth turned out to be a seriously decayed tooth, and it wasn't the only one. It turns out she's been pretending to brush and coming to me with toothpaste in her mouth and showing me her minty breath. Thank goodness she has the highest pain threshold of anyone I know and she's capable of sitting in a dentist's chair for an hour.

So I'm having to work with the good old soldier's maxim, 'no man gets left behind'.  This is a favourite with the Institutes, and is why the whole family usually gets involved with an Institutes program.  Up until recently my eldest and middlest were getting left behind, so I've put the focus on them, to help us all get to square one, and I'm still working on my own health and wellbeing so that I am in a state to be useful to them all, especially since my husband's health is still not 100% brilliant.

And though these types of issues aren't super normal in your average family, they're not out of the ordinary in an oncology family or a Heartkid family.

I was looking back recently, when a person I know told us that they were expecting a child with Trisomy 21. I was looking at what helpful info I could give them, since they were still processing the news. What struck me when I thought about it, was that there weren't a whole bunch of tips and tricks I could pass on, because the things I know which are particular to Jacinta are things to do with hospitals and medical personnel - and Jacinta's medical history, while not unique, is not the norm for Trisomy 21. I know four children in Australia with a heart condition and leukaemia in remission and Trisomy 21. There would probably be a few more, but these are among thousands of children in Australia with Trisomy 21.

The thing that struck me most, above all, was that Jacinta is constantly surprising me with how normal, average and unexciting/unproblematic she is. (Though of course very charming, funny, clever and obstinate.)

Right now as I type she's mucking around in the lounge room with her sisters. If she gets bored she'll probably go outside and find something to do in the garden - ride in the red & yellow car or attempt to ride one of the tricycles which she can now reach with her size 1 legs. The things she's doing are not necessarily all normal for a three year-old, but they are completely appropriate for the level she's at. She's sometimes a mix of attitudes and abilities, so that makes life interesting, but it's so similar in many ways to bringing up individual children who differ in ability naturally, that it feels quite normal.

I'm not sure I'd see it this way if she was my only child being compared to other children, or my second being compared to my first. Having brought up two completely different children previously, the younger of which has significantly neater handwriting than her older sister, my perspective on ability and the spectrum of 'normal' was already reasonably expansive.

Our usual weekday often consists of dropping sisters to school, coming home, having a snack and watching a bit of Playschool. She'll get into an argument with me about wanting to use my iPhone. I'll say 'no' if I don't need a convenient distraction, and she'll stamp her foot and walk off with her arms folded. She tries to get into the pantry cupboard, she tells me when she's thirsty. She's learning to say 'wee wee' at the appropriate times and she's too grown up for the potty; she'll sit on the toilet, thank you very much.

She DOES NOT need help. If you dare to accidentally help her with something, Oh my Lordy, the dummy will be spat and whatever you did will be reversed so that she can do it herself.

All the 'look at what my child did' posts by parents on social media relate to Jacinta as they did with my older children.

 Ah, I was wrong; she didn't go outside. She started making prank calls to Daddy, who's interstate, with her sisters.

Jacinta looooves talking on the phone. I pretty much can't carry on a conversation in her presence because she'll be constantly requesting in progressively less polite ways to speak to the person on the other end - no matter who they are. She's even spoken to someone at 000 I believe, once or twice....

There's an awful lot of normal going on in our lives, now that her health issues are (touch wood) under control.

And I promise I'm not leaving out the less good bits. This is life at the moment. We're living the life of a 30-ish month-old, which is about right, considering she's had time off sick. And even if she was behind purely because of the chromosomes, that wouldn't matter, because every single child is building abilities on top of previously attained abilities. That is exactly what she's doing.

If your child is lagging well behind most others their age on a particular ability, you isolate the reason, remedy if possible and let them carry on building up that ability to a level that can sustain them long term. That's how it works with all kids, the ones with fluid in the ears, the ones that need glasses, the ones with sensory issues, the ones on the autism spectrum, the ones with cerebral palsy or who have had cancer treatment....the list goes on. That's how it is with Jacinta.

So I'm back doing NAET to try to reduce the fluid in the ears. The speech has come along since she's started the NAET and since she started dance classes. It's interesting, I use her interaction at dance class as a barometer for how well she's hearing. It's definitely improved since her hearing was checked last time. This is a busy morning; dance class and NAET appointment. That's the few hours a week I'm currently spending, and it's no much more than your average bored 3 year-old whose sisters are at school and is trying to fill in the days.

I plan to get her doing swimming. That'll be another hour a week. It really isn't a drain. The swimming times are around school pickup which might mean her sisters go to after school care - they'll be DEVASTATED. (Can you detect the sarcasm? They've been begging to go to after school care!)

I'm trying to get overwhelmed and upset about Jacinta's condition, and I just can't justify it!!

I know, I have no crystal ball and I cannot guarantee that her abilities won't plateau permanently next week, but for now, she's doing just fine. Anything else I can do for her - and I do plan to do more for her, particularly reading once her hearing is ok - is a bonus.

So, when sitting in my wheelchair at her bedside when she was one hour old, I never ever thought I'd be comfortable to let her be and develop as she might. I expected more trouble. How lovely that I was so wrong.

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