Monday, April 30, 2012

The New Normal

After the initial diagnosis of Josh's eye condition, I went to a pretty dark place. It was heartbreaking, and unfair, and I was guilt ridden in only the way a mummy can be. Then we just got on with it, and I saw him being a normal two year old, and went into a bit of denial. We put his glasses on and integrated the eye drops into the daily routine, but not much changed. When Charlie was born I looked anxiously into his eyes to look for the same tell-tale signs of ELeP, and despite not finding any, still spend disproportionate amounts of time staring at him. After all, we thought J looked "normal" for so long, maybe we were simply blinded by love and incapable of finding any fault in our children. Apart from that, I tended not to think about how this condition would impact on J's life and our future.

That all changed last week. David and Josh spent a week in Sydney and met with a team of specialists. There was the Paediatrician, who will oversee and coordinate all the different specialists we need, the Geneticist, who will help us figure out exactly what we're dealing with, and of course, the Ophthalmologist. So far, it would seem that we have been blessed with a "normal" healthy toddler (insert sigh of relief here). His wonky head is still of some concern, and we have to add a Neurosurgeon to our team sooner rather than later (a sickening prospect), but we have escaped anything really serious (for now). The Ophthalmologist spent a lot of time answering our questions. It's such a freaking rare condition that doctors who recognise it are even rarer, so we got lucky when we found Dr R. She was happy with his progress and filled us in on the next stage of treatment and some pretty big decisions we'll need to make in the future. She mentioned the risk of retinal detachment again, so he'll never play contact sports. And he may never drive a car. Things like that had never occurred to me, and it seems like a trivial thing to fixate on, but it really brought it home to me just how big a deal this condition is. I was devastated. I want to tell my boys that they can do anything they want to do when they grow up, but now somehow it feels like a little bit of lie. J simply won't be able to do whatever he wants, and that hurts. I know these things are a long way off, and hopefully there'll be more options for J in the future, but until then I'm dealing with a very different reality to the one I envisaged for my son. He can still have a great life, but it will be different, and for a little boy completely obsessed with vehicles of every description, it seems cruel to me that he may only ever be able to operate the toy versions of them.

We'll never be able to fix this thing, but we can make sure that J develops as much sight as possible in both eyes. At his age, while connections are still being built between the eyes and the brain, it's a case of use it or lose it. Which means putting a patch over the weaker eye for a few hours a day. Given his response to having to wear glasses I knew this would be a challenge. We had some time together on the weekend, and I decided to introduce the patch, or "special face sticker" as we call it. I put on my teacher's hat, and pulled out a few tricks (and a lot of bribes) and he wore it for a whole half hour. The teacher in me was proud, but watching him tripping over things and really struggling to see, the mummy side took over and I was fighting back the tears.

We've had a few developments with toilet training this week, and I've been wanting to wean him from the damn dummy soon, but part of me wonders if we should be bombarding him with so many changes  at the one time. Then last night he got so excited when he peed on the toilet I realised that we need to keep things as normal as possible if we want him to keep feeling like a normal kid. Peeing on the toilet is a big deal to a 2 year old, and any win is a big win. So while I want to indulge him, I think helping him to grow up, and treating him no differently to all the other toddlers out there, is the kindest thing I can do for him. And in a funny way, these small battles help me stay focused on what really matters.

As for Charlie, his eyes are completely different to his big brother's and a beautiful shade of blue. We'll have to take him to Dr R next time just to be sure, but we are almost 100% confident that he won't have any eye problems. We got lucky, with both boys really, but we're now left wondering whether we'll get lucky again, and if we're willing to take the risk. Read all about it in my next post "The Lottery."

Thursday, April 19, 2012

The Good Drugs - a Lost Post

This one was written while I was pregnant...

A couple of months ago we went to a BBQ at a friend's place. As we left home, toting a bottle of champagne I joked to my helper that it was all for me, and that my husband would be driving home. When we got back at midnight my helper was surprised that I was the one behind the wheel and said "I thought you were going to drink tonight." And she was serious... Admittedly I did have a tiny glass of that sweet, delicious, sparkly goodness but the thought that someone else assumed I would be willing to drink enough to make myself unable to drive, at 6 months pregnant, shocked me into sobriety.

When I was pregnant with J I was a bit of a martyr. I didn't want to take anything that might potentially harm my little foetus and ruin his chances of becoming Australia's first president one day. I was also still feeling extremely guilty about our ski weekend, several doses of painkillers and one or two margaritas I may have inflicted upon him before I knew I was knocked up. I battled through morning sickness, headaches and hayfever with the stoicism of one who feels wholly responsible for another living being. I did take the occasional Panadol and ended up needing antihistamines to breathe while on holiday in Melbourne, but the thought of anything more hardcore literally turned my stomach.

This time round I've been a little bit more relaxed. My all-day morning sickness was worse, a lot worse, and with a toddler to chase after I needed to be able to function. I'd been pregnant about, oh, 5 minutes before I was at the doctor begging for something to make the constant, insufferable queasiness go away. I've popped Panadol for those pesky headaches and I have a constant supply of antihistamines on hand for the sneezes, and occasionally for those nights when I just can't sleep. I had to have a course of antibiotics recently when I was struck down by "teacher's flu" and I didn't hesitate to take whatever my doctor told me was safe to take. And yes, on that night out a while back I had a wee drop of Veuve with friends. Maybe it's because I've realised that babies are more resilient than we give them credit for, or simply that I know I need to look after my own health in order to ensure the health and wellbeing of my little BITO. With a second child to look after, and a full-time job I didn't have the luxury of laying around moaning about how ill I was, so I did what I had to to get on with it, but I made sure I knew what I was taking.

It seems opinion on this one ranges from one extreme to the other. Here the medical profession offer you many "safe" alternatives when it comes to managing your health and wellbeing during pregnancy, moreso than in Australia I think. At points I have questioned whether or not it really is "safe," but like so many others here I put my faith in the doctors I've chosen. When we were in Manila before Christmas I was struck down by incapacitating hayfever. I sneezed so violently, and so frequently, I was concerned my BITO would make a premature exit. I didn't have any antihistamines with me but I went along to the pharmacy, feeling pretty confident that I could buy just about anything I asked for without a prescription, and requested the drug that my doctor here had prescribed. I was met with a look of horror and told there was nothing "safe" for me to take. It took a good 10 minutes and much consultation amongst the staff before I walked out of there with just enough pills to get me through the weekend. The looks on the faces of the staff and their tone as they talked about me, in front of me, made it clear that, in their eyes, I was a terrible mother doing unthinkable harm to my unborn child. Why the attitude towards one course of treatment would be so different, I don't know, but it left me more than a little confused.

When it comes to drugs and pain relief during labour, opinions are equally divided. I chose to have an almost drug-free birth the first time round, and I have absolutely no regrets, and no plans to do anything any differently this time. Again, I find it interesting to learn where people stand on this issue. There are those who go their whole pregnancies without taking anything, watching what they eat and drink, taking their job as gatekeeper very seriously and not allowing anything in that might affect their babies. But when the pain of labour begins it all goes out the window, and they request an epidural after the first contraction. Then there are those who treat drugs during labour as a basic right - a standard part of the process. During a conversation around the staffroom table one morning I was shocked by one colleague's comments when I was pregnant with J. When I mentioned that I was having a natural birth she said I was crazy, "if drugs are available to take away the pain, why be a hero?" (her exact words!). I didn't see it that way, and wanting a drug-free birth was not something I felt I had to do to prove my worth as a woman, but simply something I was capable of doing.

For me, what it comes down to is whether or not you need something. I know I can have a baby without drugs, but if I have a pounding headache and I'm on my own with a two year old, I do need pain relief (and maybe half a glass of wine...). There's also a pretty big difference between paracetamol and pethidine.

Which side of the fence are you on when it comes to medicating yourself during pregnancy and labour?

Friday, April 13, 2012

An Anniversary

Five years, two countries, one home, countless adventures, many wonderful friends, two beautiful little boys, some wins, some losses, much laughter, learning, and love, have all lead us here to one amazing life. Happy Anniversary D, may there be many more x

Wednesday, April 4, 2012

The Terrible Twos - A Lost Post

I've never liked the term "the terrible twos." It didn't seem fair to me to mark every two-year-old in existence with the same label, especially not one that implied that they were fairly unpleasant little humans during a certain period. Whenever I have boasted over the last 12 months how delightful my gorgeous son was, I was generally met with a smug friend or relative saying "just wait till he's two..." I wanted to punch them for implying that my little man was capable of being something as horrific as their own child was at that point evolving into. I felt like I had done my time with J in the early days. Of course it wasn't his behaviour that caused us grief, but the reflux, his adamant refusal to sleep, and the mummy blues, that overshadowed the first 6 months of parenthood. When we came out the other side of it all and celebrated J's first birthday almost a year ago, I felt like we had all miraculously survived a great trauma. I wanted to believe we would be spared that period known as "the terrible twos" mostly because, like a lot of parents, I found it impossible to believe that my son could be anything less than adorable.

He's always been feisty and impatient, and he shows a determination that equals that of both his parents combined. Things have shifted lately as he's realised his own strength and become better able to express himself. He's realised he has options, and that has been the root cause of all of our problems. A few weeks ago I asked him to do something simple. I can't remember what exactly but he turned to me, looked me in the eye and said, very emphatically, "no." It wasn't so much that he was saying no because he didn't want to do it, it was that he was choosing to say no because it was what I wanted him to do. I recognised that look he gave me, I've seen that furrowed brow, the thundercloud over the head before, and I'm sure later in life he'll have the pulsing blue vein above his eyebrow too - it's a family look, we all get it from time to time, and I knew I'd be seeing a lot more of it. We were entering a new "phase."

I used to look at parents of children behaving badly with a mixture of sympathy and judgement. I couldn't help but feel that they were responsible for the way their child was behaving, that in some way, some flaw in their parenting had led to that meltdown/tantrum/act of violence. Now I know better. Toddlers have very little impulse control. They can't help but scream when their baby brothers are asleep upstairs. They feel cross that they can't get what they want and they haven't learned positive ways to express it. "Hugging not hitting" has become a mantra in our house, and while most of the time we manage to remind J that he'll get more attention if he asks for a cuddle when he's cranky, sometimes he simply exercises his right to choose and still smacks Mummy in the mouth anyway. I was dreading this phase, because deep down I did know it would come eventually, but it's not as bad as I thought. My dread was based on my own impatience and the fear that I would not be able to respond appropriately when he started kicking and screaming in the middle of the supermarket - I was afraid I would also lose it when my buttons were pushed (and believe me, he knows how to push my buttons!). There have been times when it's been a battle to control him, he is just so big and heavy that it's almost physically impossible to restrain him, and I have been worried that he would hurt himself, or someone else. But for the most part I've been calm and not at all as flustered by his behaviour as I imagined I would be. Maybe it's because I see him the other 75% of the time as a sweet and happy little boy, or because I know the tantrum will pass, or maybe it's both, but it really is ok.

As a two year old J has been a pleasure to watch. The things he says, the way he responds and reacts to everything around him, his energy and the sheer joy he gets out of the simplest things, the sudden realisation that he is a "big boy" now and his quest for independence, his sense of humour and new level of awareness of the world he inhabits, it's all amazing and wonderful to us. There are bad times, daily, but they are bearable because the good times are so good. "This too shall pass," is our other mantra, and it's helping us realise that the twos aren't so terrible after all.