We've been busy going about our business lately, caught up in our renovations and daily life with two beautifully busy boys, quietly in denial about the severity of Josh's eye condition. Then a few weeks ago we had a massive reality check when his ophthalmologist (a word I'm really getting sick of writing, so will now refer to her as the Oph.) presented his case at a conference. She got back to us with a recommendation we'd been dreading - surgery.
There wasn't a general consensus at the conference amongst all the Ophs that were there, only discussion that surgery was an option worth exploring. It has been done, with success on patients with similar conditions, but J's particular condition is so rare, that no one knows exactly what the outcome would be. It could be an improvement, or it might not change anything. If he doesn't respond well, if his eye reacts badly to the procedure, or if the structure of the eye is in anyway compromised, it could very well make things worse. It's a roll-the-dice type scenario and we are more than terrified. Our Oph was hesitant to say one way or the other what we should do, which makes decision making pretty difficult, but she did say we need to make a decision soon.
We then saw an Oph here, a great guy, a rare treat in a city where decent specialists are few and far between. He also used the "S" word, but explained it to us in a way that made us realise we didn't really have a choice. It's now not a matter of if, but when... There's a fairly small window of opportunity here, while his brain and eye develop neural pathways between each other. The good news is that his vision was better when he was small so he already has the foundations laid, but as the condition progresses (and by progresses I mean, gets worse), what he sees is less clear and the brain can't decipher it as easily, so it may very well shut off the right eye. Surgery would remove the obstacle, his lens, and hopefully give him a better line of vision. He'd have to wear a contact lens and his glasses and I imagine, initially, he won't like that very much.
There are so, so, so many unknowns and it feels like a giant leap of faith. We also need to decide where to have the surgery - here, where everything is familiar and comfortable - or in Sydney, where the better specialists and family are, but where it's all a bit different and less comfortable. I suddenly feel very old. When did I become responsible for making these major decisions for another person? We're talking about our son having usable vision in one of his eyes, or not, how do we possibly make that call, knowing he will have to live with it forever if it doesn't work out? On the other hand, doing nothing could also be a really bad move. I'm torn between wanting to protect the little guy from the ordeal of general anaesthesia, hospital and a potentially long recovery, and the knowledge that we really need to do what it is in our power to do, to save his eyesight and give him a decent shot at maybe one day driving a car, backpacking around the world on his own, and doing all the other things us sighted people take for granted.
When I was 14 I had major surgery on my jaw. The doctors sold it to my parents as being necessary to prevent future problems. They trusted the advice they were given, and I had the surgery, spent a night in intensive care, a week in hospital, and six weeks eating through a straw. I woke up from the anaesthesia and the first thing I saw was my mum, crying beside the bed. I was high on pethidine and didn't know what she was so upset about. Even when I saw my bruised, swollen and unrecognisable self in the mirror later that day, I still didn't get it. Faced with the prospect of being on the other side of the bed, being that parent, I finally do understand, and I really wish I didn't.
Thursday, August 30, 2012
Wednesday, August 15, 2012
People In Glass Houses
Let me start by saying I have been incredibly lucky. My friends are nothing but supportive, and have always been great sources of advice, comfort, reality checks and chocolate - whichever is most appropriate at the time. Today's post came about while I was researching for an article I'm writing. I asked for input from lots of different sources and I came across something that made me a little uneasy. There were some who were quite outspoken in their opinions to the point that some comments caused offense. There were others who were afraid to speak their minds on a public forum or at mother's groups for fear of being vilified for their choices (based on previous experiences.) This is my response to all of that...
I hate to admit it but I am guilty of being judgemental from time to time. I've looked at other mothers and raised a brow at some of the things I've seen and heard. I try to be discreet about it and keep my judgements to myself but I know there have been times when I have pushed my opinions onto others, sometimes because I wanted to be helpful, but I'm ashamed to admit, at other times I've done it because I thought my way was better. Sometimes I get so frustrated that I want to scream "what are you doing?!?" but I don't. I know how it feels to be judged, and there are a lot of things I do that make me feel so guilty that I want to curl up into a ball on the floor (and it's pretty tough to be judgemental from down there). Like giving my baby boy a bottle of formula at night so he'll sleep through (something I feel so guilty about I'm not doing it anymore). Or occasionally putting my toddler to bed early so I can have a glass of wine and watch TV at the end of a very long day (definitely still going to do that). To some mothers these actions are comparable to heinous crimes, and while I believe that everyone is entitled to their own opinion, what I don't get is women who feel they have the right to openly berate anyone whose parenting style differs to theirs. Being a mother is hard enough without other mothers, who you imagine would be your best allies, quite openly attacking the choices you've made (especially before they know the reasons behind those choices...). I don't know many ladies who would dare to criticise what their friends are wearing to their faces, or tell them what they're doing wrong in their jobs or their marriages - so why do so many of us feel it's ok to judge a mummy who might do things a little differently when it comes to parenting? Surely if any area of our lives deserves support, sensitivity and tact, motherhood must be it?
I hate to admit it but I am guilty of being judgemental from time to time. I've looked at other mothers and raised a brow at some of the things I've seen and heard. I try to be discreet about it and keep my judgements to myself but I know there have been times when I have pushed my opinions onto others, sometimes because I wanted to be helpful, but I'm ashamed to admit, at other times I've done it because I thought my way was better. Sometimes I get so frustrated that I want to scream "what are you doing?!?" but I don't. I know how it feels to be judged, and there are a lot of things I do that make me feel so guilty that I want to curl up into a ball on the floor (and it's pretty tough to be judgemental from down there). Like giving my baby boy a bottle of formula at night so he'll sleep through (something I feel so guilty about I'm not doing it anymore). Or occasionally putting my toddler to bed early so I can have a glass of wine and watch TV at the end of a very long day (definitely still going to do that). To some mothers these actions are comparable to heinous crimes, and while I believe that everyone is entitled to their own opinion, what I don't get is women who feel they have the right to openly berate anyone whose parenting style differs to theirs. Being a mother is hard enough without other mothers, who you imagine would be your best allies, quite openly attacking the choices you've made (especially before they know the reasons behind those choices...). I don't know many ladies who would dare to criticise what their friends are wearing to their faces, or tell them what they're doing wrong in their jobs or their marriages - so why do so many of us feel it's ok to judge a mummy who might do things a little differently when it comes to parenting? Surely if any area of our lives deserves support, sensitivity and tact, motherhood must be it?
Not a single day goes by when I don't feel guilty about something. I am constantly questioning every choice I make. I am far from perfect and, to be perfectly honest, I die a little inside every time I do something that someone has told me will be bad for my kids. Like giving them formula, or letting them cry a little before they go to sleep. Even as I write this, and admit that I do those things, I'm cringing because I know there are some of you out there thinking "I can't believe she does that!"
So, why are we so quick to judge, so keen to criticise? Is there any mother out there who doesn't question herself at least once a day? How many of you haven't had that crisis of conscience, that voice in the back of your head questioning a certain move, that late night, panicked trawl through baby books and parenting websites, desperate for answers?? Are any of us so good at this gig that we have the right to tell others what they're doing wrong, without first wondering if maybe they have good reasons for doing what they're doing? Is it a misguided attempt to be helpful? To make ourselves feel better about what we're doing? Or are some of us just completely oblivious to the fact that our "suggestions" might cause angst and heartache? I just read this great post about "Mom Bullies" that does a great job of describing the kind of mums I'm talking about. I agree that parenting is a damn tough job, and when you have a good day, when you find what works, you have every right to feel sanctimonious and superior. And I know how tempting it can be to share your insights when you see that someone has made a decision without knowing all the facts (I had to bite my tongue very recently). But that doesn't mean that what you do - what works in your house - will work in mine. Because really, whatever you practise, whichever parenting philosophy you subscribe to, there will always be "evidence" to back it up, and you will always find someone who agrees with you and who will tell you you are absolutely, 100%, without a doubt, doing the right thing for your family. But likewise, there will always be just as many voices that argue against it, and for those of us who aren't that confident, despite all that evidence, it's that one negative voice in the day that speaks the loudest. And don't get me started on how easily such helpful suggestions can be misconstrued in emails or forum comments. A tongue-in-cheek, "oh, he really should poo more often," can easily be read as, "you're clearly neglecting his needs."
When a friend, or a complete stranger for that matter, confides in you that she is thinking about giving up breastfeeding/going back to work/trying "cry-it-out" sleep training/swinging from the chandeliers high on Xanax every night, what she's really looking for is reassurance. She wants you to tell her she's doing the right thing. However much you disagree with her choices, whatever you know that she doesn't, whichever choices you think she should be making instead, chances are she has already made up her mind, and your input will not change it - it may just alienate her. If it works for her, then it will always be the right choice. What we all need is support and respect for our decisions, and the best thing you can say to someone seeking advice is "I don't know what I'm doing either..." That's not to say that you should never offer advice, because advice can literally save lives, just think very carefully about how you deliver it. A mum carrying her baby incorrectly in a sling, should probably be told, but the one buying formula, might be less receptive...
When a friend, or a complete stranger for that matter, confides in you that she is thinking about giving up breastfeeding/going back to work/trying "cry-it-out" sleep training/swinging from the chandeliers high on Xanax every night, what she's really looking for is reassurance. She wants you to tell her she's doing the right thing. However much you disagree with her choices, whatever you know that she doesn't, whichever choices you think she should be making instead, chances are she has already made up her mind, and your input will not change it - it may just alienate her. If it works for her, then it will always be the right choice. What we all need is support and respect for our decisions, and the best thing you can say to someone seeking advice is "I don't know what I'm doing either..." That's not to say that you should never offer advice, because advice can literally save lives, just think very carefully about how you deliver it. A mum carrying her baby incorrectly in a sling, should probably be told, but the one buying formula, might be less receptive...
I could write post after post justifying the choices I've made, but I won't, because I believe that I shouldn't have to. But I still feel like I need to at times, and I hate that. Our world revolves around our boys (yes, we live in a Kindergarchy, deal with it), and when it comes to how to raise them we make educated decisions whenever possible, and the rest of the time we rely on gut instinct and our hearts to work out what is best for them, and we strive to make sure the needs of every family member are met. We want our kids to be happy, healthy, well behaved, independent young men who feel loved and know that they can rely on their parents to make the right choices, does any of that sound like the motivations of a bad parent? We all want that for our kids, does it really matter how we go about it? And is it anybody else's business? I may not be a perfect parent, and I'm overwhelmed by how little I actually know, but most of the time I know what works for us. So until my boys can tell me I'm doing a great job (and they may never get around to it) I just have to look at them and see how happy and healthy and bright they are, to know I'm doing the very best I can right now, with the resources I have to hand. And then I'll have another chocolate biscuit, put the boys in front of the TV and call my friends and tell them what a great job they're doing, because that's the kind of mother I want to be. It's a constant work in progress, and as I've educated myself I've changed the way we do things - but it hasn't ever been because someone has told me I'm doing it wrong.
There are so many factors that influence the choices every parent makes, and they may not always do what is considered "right" or even what they planned to do, but you can never know what is behind someone else's decisions. It's quite possible that choosing to give a baby formula, or going back to work, co-sleeping, using disposable nappies, or whatever it is you disagree with, may have been one of the toughest decisions that parent has made. In fact, the decision may have been out of their hands entirely. So, before you judge a friend, a neighbour, a random stranger on a forum who might be desperately seeking advice and wanting someone to tell her that what she's doing is ok, remember how tough this parenting gig is, and try not to make it any harder. We all deserve credit for loving our kids and doing the very best we can.
THIS POST RIGHT HERE is at the top of my list of "Posts I Wish I'd Written," and it perfectly sums up what I've been thinking this week and what I wanted to say today, only it says it better, of course.
And just to show I'm a good sport, here's a completely different point of view for the mums who do step in and bravely offer advice out of genuine concern.
THIS POST RIGHT HERE is at the top of my list of "Posts I Wish I'd Written," and it perfectly sums up what I've been thinking this week and what I wanted to say today, only it says it better, of course.
And just to show I'm a good sport, here's a completely different point of view for the mums who do step in and bravely offer advice out of genuine concern.
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