Monday, January 30, 2012

Keeping it Real

This post has been in the works for a long time. I have struggled to find the words to say what I really wanted to say, and to be honest, I'm not sure I've found them yet. But saying "thank you", while it doesn't seem like enough, has been at the top of my To-Do list for a while now and I really need to say it. So many of you, friends and family, and blog friends who we've never met, have written or called to offer support, and I literally cannot tell you how much it has meant to me, to us. Everyone had a different perspective, words of kindness and wisdom, and a story to share, and every bit of it was positive. It has all helped immensely, and I will remember your support more than I will remember the low points we've had during this time. So, from the bottom of my heart, thank you.

Since I wrote about J's eye condition I haven't really had a moment to dwell on it. We've been busy sorting out referrals and seeing doctors in Hong Kong, trying to find someone who knows anything about it here (so far unsuccessfully). But we've also been busy going to playgroup, painting, eating playdough, playing with the train set, chasing the dog and mastering the new scooter. While his parents were busy freaking out, fretting about the future and making treatment plans, my beautiful boy just got on with being his awesome self. Don't get me wrong, life is definitely different. The task of putting in eye drops is a constant reminder that something is out of the ordinary but it's actually been quite easy to just "get on with it." Doctor's visits and any mention of genetics still make me feel ill but every new thing we learn, and every positive story we hear makes it that little bit easier.

What has helped above all else is watching J and seeing how completely unfazed he is - he has kept my feet firmly on the ground. Not only do I not have time to worry excessively, I don't want to, for fear of worrying him. He clearly isn't concerned with his lot in life and I'm not going to be the one that changes that. I had a bit of a lightbulb moment recently when reading this post on a friend's blog (if you want to read someone telling it like it is, I seriously recommend you check this one out). I realised that no amount of stressing about what is and what will be, will change who my little man is. 

He just fell asleep with his little hands firmly clutching my hand to his chest. I lay there curled around him until my arm went to sleep. I got into the habit of getting into bed with him at night when I was working, it was such a short time between getting home and him going to bed that I wanted to spend every single minute with him that I possibly could. Now, of course I have the new baby as an excuse - 5 more weeks of being able to give my firstborn my undivided attention, and if he wants Mummy in bed with him, so be it. Of course it's all driven by guilt and that desperate need to be needed that is every mother's curse, but it's moments like those that make me want to wrap him up and keep him just the way he is forever. That moment when he finally gives up and falls asleep is my new happy place. Until recently I was worried about his dependence on bottles and dummies, and the appalling situation we have found ourselves in at dinnertimes, and all those other "bad habits" parents obsess over, when, let's face it, there were bigger fish to fry around the corner, and our J bird was more than content with the status quo.  Contrary to what I once believed, letting my son put himself to sleep with a dummy and a bottle of milk at 2 years of age, does not make me a bad mother. Constantly worrying about everything we're doing "wrong" and getting in the way of our kid being himself, is a far worse crime if you ask me. And if anything, our recent woes have taught me that there is a lot more in life to worry about.

Of course, kids need consistent guidance and rules and boundaries and vegetables, and those things are ever-present in our house. But sometimes it doesn't hurt to let them lead the way, it might even be the best thing possible for everyone. In our case my son has taught me to let go and enjoy the moment, and that he will continue to be whoever he wants to be, no matter what obstacles are in his way, or how much I worry about him. And in our house that's how we keep it real, one day at a time.

Monday, January 23, 2012

Enter the Dragon

It's January, it's below 10 degrees outside and there are 30 minute queues at the supermarket, which can only mean one thing: it must be Chinese New Year. Kung Hei Fat Choy everyone! I wrote about Chinese New Year last year and I can't believe all that has happened since then. I never imagined that we would be expecting a baby (and soon) the next time CNY rolled around, but given that it was the year of the rabbit, I really shouldn't have been so surprised! Our J was born in the the Year of the Ox, and at the time we read a little bit about what that meant, just for fun. But our little BITO is a different story - he/she will be a dragon, and I've learned that this is a very big deal around here.

Once again, just for fun, I started reading up on what kind of personality my little one would have, based on the Chinese zodiac. I learned that dragon babies are incredibly auspicious, and are destined to be intelligent, powerful, successful and wealthy (Bruce Lee was a famous dragon)- which inspires many parents to do some creative family planning. The dragon is the only mythical creature of the zodiac and that has a lot to do with its desirability apparently. It's considered to be a blessing to have a baby, especially a boy, in a dragon year. Reading about the lengths some people go to to have a dragon baby, I feel a teensy bit guilty that we did it with very little effort and no consideration whatsoever, but also strangely proud - whether we intended to or not, we've done our child a great favour, or so it would seem.  We've been hearing a lot about how lucky we are, and then I read this article... I haven't really blogged yet about the insane competition for school places here, or fight for beds in maternity wards, but trust me when I say it's fierce at the best of times. It seems crazy to me that the quest for a baby with certain qualities would place such an extraordinary burden on an already overwhelmed system, but after 4 years here I'm not surprised, and I have my elbows out, ready to fight with all the other parents of dragon babies out there. I never imagined I would be that parent, but I have the application form for our desired school already printed out ready to be filled in as soon as BITO enters the world. I'm hoping that the fact that he/she will arrive fairly early in the year will work to our advantage but I'm still struggling to believe that this is something we even have to think about!

While I'm prepared to do battle with anyone standing between me and a private hospital bed, or between BITO and a place in a good school, I won't be forming too many preconceived ideas about the kind of child we're about to welcome. Whatever they will be when they grow up, they are still babies that eat, poop, throw food and deprive their parents of a great deal of sleep, and they will also bring us great joy, future world leader or not. At the end of the day I'm more concerned with the health and happiness of my kids, but if someone finds any evidence that dragon babies sleep more in their first year than others, I'd be very interested indeed. Whether or not my dragon is destined for greatness remains to be seen but I do find it quite funny when I picture a dragon arriving in a home that already houses a goat, a rabbit and an ox - if there's any truth to it all, life will certainly be interesting!

Despite my scepticism, one of the quotes from the BBC article that really resonated with me was, "When the dragon wants to do something, there will be no stopping him." Our little one has already proven that he/she is determined to be here, and I have no doubt that, regardless of how he/she turns out or how many dragon qualities we see, that determination is set to continue. Here's hoping for an auspicious year for all of us, it's already off to the best start imaginable.

Saturday, January 14, 2012

Bump Bliss

I love being pregnant, and it appears that I'm quite good at it. If you leave out the first 13 weeks where I felt like crap and was a hormonal she-devil 24 hours a day that is. For the last 17 weeks I've been feeling great, my hair is thick and shiny, my skin is glowing and the extra weight on my top half beautifully disguises the fact that most of the time I resemble an anaemic pear. It's a complete mystery to me how this has happened, but I also feel more emotionally balanced and in control than when I'm not pregnant (again, ignoring the bad, bad behaviour of the first trimester). The first time around I was huge, and the fluid retention and carpal tunnel syndrome got a little tired towards the end, but apart from a mild case of narcolepsy and an inability to hold an intelligent conversation, I'm 7 weeks from the big day and not yet ready for the end.

Given the defective genetics we have unknowingly passed on to our beautiful boy, and potentially little BITO, we've made the call that this will (with 99% certainty...) be my last pregnancy. I'm trying to focus on the fact that we got off lightly, when you think about all the things that can go wrong when two sets of defective DNA hook up and make babies. But I am genuinely really sad that I won't ever be pregnant again, and today I want to take a moment to mourn. So here's my list of things I will miss about pregnancy, and a few of the things I won't...

I will miss (in no particular order)-
The anticipation of waiting for that little blue line after peeing on a stick, when 2 minutes in the quiet solitude of the bathroom feels like FOREVER.
The look on my husband's face, of pure joy mixed with pride, when I tell him I'm pregnant.
Having an excuse to eat cereal in the middle of the night. Hell, having an excuse to eat whatever I want, whenever I want.
Those first few days after finding out, before the nausea kicks in, when you keep it all to yourself and knowing it's the most precious secret of all.
Pants with elastic waistbands.
All the nice maternity clothes I treated myself to this time around because I was sure there'd be another baby one day.
Seeing and hearing that tiny heartbeat for the first time, and watching the little one go from something resembling a kidney bean, to a really tiny person.
Tiny baby gymnastics, especially those first little flutters, when it hits you that there's actually a person in there.
Baby name debates.
All the kindness and fuss that comes your way when it's apparent you're carrying very precious cargo.
Birth Days - I know it sounds crazy but the day I gave birth to my son was the most exhilarating day of my life, and you have to experience it for yourself to understand how amazing that moment is when you meet your baby for the first time. It's heaven.

Things I won't miss -

The first trimester.
Needing to pee all the time. Especially in the middle of Central, miles from any public toilets...
Suddenly finding myself absolutely starving, and almost fainting when I can't get food quick enough (again, generally happens in the middle of Central).
Compression stockings and varicose veins, eurgh...
Not being able to bend in the middle.
Comments about the size of my cankles.
Sleeping in 2 hour bursts because I need to pee 14 times a night, and the rest of the time I'm just really uncomfortable. I can't wait to sleep on my tummy again!
Clothes that resemble scaffolding, with tummy and boob support, will be happily discarded in a few months time.
Wanting to throw up every time someone washes the dishes or puts deodorant on in the house - everything in our house is now unscented and everyone thinks I'm mad.
Decaf everything.
Having to ask someone else to cut my toenails, again, eurgh...
Feeling like my body belongs to someone else (and someone with very little respect for it at that).

Despite our woes I wouldn't change a single thing. I've loved every minute of being pregnant and watching my baby boy grow, and we still have so much to look forward to with the next one. I just wish it wasn't going so fast. One day I might decide that 25% is a low risk and embrace the 75% chance we'll have a completely healthy, normal-sighted child, but for now we're done and it's farewell bump and all the joy you have brought - it's been bliss.

Wednesday, January 4, 2012

The Eye of the Beholder

I honestly don't know where or how to start this post. It's been running through my head for a couple of weeks now, and I want to get it out there, as promised a few days ago, but it's going to take some time. I want to apologise to those of you who were worried about us after my last post, and assure all of you up front that we're ok. Here's the full story...

We've always suspected that our beautiful boy had some issues with his eye sight. Our GP advised us to wait until he was a bit older before we put him through the trauma of visiting an opthalmologist. So we did, glad for someone else to be making that call for us. I always thought it would be challenging to assess the eyesight of someone who couldn't yet tell you what they could or couldn't see, so it made perfect sense to me. On a whim, we decided to see if we could get him into a specialist while we were in Sydney recently. We thought, worst case scenario, he might have a lazy eye, or be short-sighted like me. So, on an idle Tuesday, days before Christmas and after D had flown back to Hong Kong for work, I drove us to a tiny paediatric opthalmology practice in Hurstville (a million miles out of my way, and a suburb I'd only ever been to once before) where we waited, and waited and waited. I almost pulled the pin a few times. I didn't want to be there, especially not on my own, and my little man was rapidly losing patience. I was convinced it was a waste of our time, and the time of the doctor who had squeezed us in as a favour to a friend who happened to work with J's grandfather. I was rude to the orthoptist who saw us first, and didn't allow her to put any drops into J's eyes. I just wanted someone to look at him, tell me if he looked normal or not, and be sent on my way.

The opthalmologist was more patient with me than I deserved and took a look at him like I had asked. She told me his eyes weren't "normal" and wanted to put drops in and take a closer look. Then I was scared. I did as she asked, waited for the drops to take effect and went back in with J half an hour later. By that stage we had been there over 2 hours and we were well past J's nap time. While we waited I had called D in tears just as he was about to board a 16 hour flight to New York. If I thought my half hour wait was long, his 16 hour one was excruciating. The opthalmologist looked at his eyes very carefully and talked me through everything she was doing. She diagnosed a very rare condition known as Ectopia Lentis et Pupillae (or ELeP), which basically means that his lenses and pupils have formed in the wrong place, in the opposite direction to each other. He's also really short-sighted, and one eye is worse than the other, so the bad eye is going to be a "lazy eye" sooner rather than later. So when my little man sits with his face pressed to the TV screen, it's not because he's a typical 2 year old, it's because he can't see it.

There's a lot about this condition that we don't know, but we do know that it can't be fixed, and it is progressive (meaning it will get worse), but there are things that we can do to help. We put in eye drops to dilate J's pupils and increase the area of his eye that he can see with. I cried the first time I had to do it, but it's getting less traumatic as J gets used to it, and his favourite stuffed toys now get eyedrops too. He also has to wear glasses. I've been wearing glasses for 20 years, and J's prescription is 5 times stronger than mine, so we're not off to a good start. Also, getting a toddler to wear glasses is like trying to walk a cat on a lead, but we're hoping he'll eventually realise they make life easier.

We had never heard of this condition before, and it's so rare that we haven't been able to find out a lot about it yet, there isn't even a Wikipedia page for it and our local GP had never heard of it. The doctor in Sydney suggested we also consult a neurosurgeon about J's wonky head, a terrifying prospect, even though there's a good chance the two things aren't related. Every time I sit down to research I get frightened sick by all the syndromes this condition is associated with and all the words I don't understand. There's no way of knowing how it will progress or affect his vision in the future. We do know he'll always need glasses, and he won't ever play contact sports, due to the high risk his retinas will detach. He'll probably develop cataracts or glaucoma at some point and may need surgery one day. What we do know about the condition isn't half as scary as what we don't know, and I am so grateful that we found a doctor who knew what she was looking at. I have been terribly busy freaking out about all the potential complications and issues this will raise for J in the future, but a lovely friend reminded me the other day that medical technology has come a long way in the last 30 years, so hopefully by the time J's eyes start to deteriorate, when he's in his 30's or 40's, more can be done for him.

The real blow came when we learned that this is a genetic condition, and a new term entered our vocabulary - autosomal recessive disorder. It means that D and I both carry the gene but we're not affected ourselves. When we first met we discovered we had a lot in common, who would've known that, along with a love of Coldplay and Cointreau, we also shared a defective gene... So, not only are we waiting to see how J will be affected by this condition, we're also waiting to see if our new little one also has it. There's a 25% chance baby will be affected, and a 50% chance he/she will carry the gene but have normal eyes, and another 25% chance there'll be no sign of the condition at all. I'm torn between feeling terribly guilty that we didn't find out sooner, and that we were so blase about falling pregnant again, potentially creating 2 little people with serious eye problems, and at the same time devastated that this has put an end to my dreams for a 3rd baby. We simply couldn't risk it knowing what we know now. We need to have genetic counselling, another nasty term, to find out if there are any other "surprises" lurking in our DNA but, for want of a better term, the horse has already bolted.

I've done a lot of crying and cursing since the diagnosis, and I feel sick with worry one minute, and relieved that it's not more serious the next. I'm angry that the joy of a new baby has been taken from me, and I will be anxious until I know for sure whether or not baby is affected too. Of all the awful things that could go wrong in the human body, this is fairly minor, and while we still have more tests to do, we know how lucky we are that it's not worse. Support from family and friends has been amazing, and has stopped me from heading to that dark, dark place I go to when I worry too much. A million thank you's aren't enough to cover that.

Whatever happens, J is still my bright, confident little man, and I'm reminding myself of that every day. I'm almost grateful that we didn't find out sooner because it has meant that we have always treated him as if he could see normally. He doesn't know any different, and whatever happens, he will always be my beautiful boy, even when he's a grown man who complains about his mother constantly calling to remind him to get his eyes checked. While I'm tempted to homeschool him for the rest of his life to spare him from incompetent teachers and cruel classmates, my hope is that we'll be able to surround him with people who know what they're doing, and who treat him like the great kid he is, and not the funny-looking one with the thick glasses. I'm determined to make sure he grows up knowing he can do anything, whether he can see or not. And as for the one on the way, he/she will be loved the same way - ferociously and completely.

Like I said, we were blindsided completely, and we're still struggling to come to grips with it all. We're on an unfamiliar path without a map, facing specialist appointments, battles over glasses, and big decisions to make about things like schools and treatments, all while getting on with the business of daily life with two kids. Stay tuned.

Sunday, January 1, 2012

A New Chapter

Happy New Year lovely readers! I hope that wherever you are in the world, and however you chose to celebrate it (or not) that 2012 will be kind to you all. We watched the Sydney fireworks on the Australia Network at 9pm and quietly slipped into bed while Hong Kong waited for midnight. It was the perfect start to the year.

2011 was hectic for us, but then again, aren't most years hectic these days? Last year took us to Bali, Manila, London, Edinburgh, Manila again and Sydney. I had 2 new jobs, D got an upgrade (promotion) and we watched J grow into a pretty cool little boy. There were a few surprises, not the least of which was finding ourselves in the family way again - a most unexpected but exciting turn of events. We decided to sell the house, and then we decided to stay, and now we're a few weeks away from renovating. We had visits from family, and time with old friends and new. It was a big, bold year and we feel like we've achieved a lot, but we've had to work really hard to do it. Sitting down with a cup of tea and a chocolate biscuit felt like the most appropriate way of seeing in a new year; as if we wanted to show 2012 how we roll, before it thunders down upon us with more of the same chaos as last year.

In so many ways, this year will bring us new beginnings. An old home made new, a beautiful new baby, a few new adventures with any luck, and a set of brand new challenges. In the last few weeks we've found ourselves headed down a very different path to the one we thought we were on, and no GPS or sat-nav can help us navigate our way through this one. Do any of you remember the "Sunscreen Song" from the late 90's? I was reminded of one line from this song recently - "The real troubles in your life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday." And so it was, on some idle Tuesday (at 12pm for the record), 5 days before Christmas, that we were blindsided. The song was right. Please don't worry, I'll fill you in on all that next time. For today I want to wish you all the very best for the year. And to 2012, and the road ahead, I say bring it on.