cystic fibrosis


Three years out of the paid workforce and I started to want back in. Is it a mistake?

Everyday, I am so busy as it is. I am exhausted. My head is spinning with all the things I’m trying to get done, trying to think through. I have a long list, my finger in many pies. It is difficult to explain to people what it is I do, but please believe me when I say: I do a lot.

And if I get a paid job, even a very small teeny-tiny part time job, what will change? What can I stop doing? Yes, someone will else will have the pleasure of minding Wren while I am at work. But I will still have to make his lunch, get him dressed, get him there. Will Turtledad do more cleaning? more laundry? more anything?  Nobody but me will put the time and mental energy in to do all the research in to Wren’s health care needs. And I just don’t trust the professionals.

My volunteer and activist work will probably suffer. My social life will suffer. The dog will get even less attention, no doubt – poor old thing. And this already very-intermittent blog will suffer.

I do hope that my garden won’t suffer. I hope that my mental health won’t suffer. I hope that Wren won’t suffer.

I think there’s little doubt that life will be even more busy. I can only hope I’ll learn to cope.

So why do it?

To develop another side of myself, to help me feel like a more-rounded multi-dimensional person, because somehow the many, many things I do now are not enough.

So that I can say ‘I have a job’. I don’t believe anyone should need to say that, because there are so many other things of value in the world – but right now, I do.

To keep myself employable, with the possibility of financial independence, because who knows what will happen in the future.

Because it’s been three years out of paid work, and each day I feel my confidence is dwindling and that world is becoming scarier. If I don’t do it now, it will just get harder.

Because full-time parenting is too much for me now. I need time away from Wren. Oh yes, there’s the mama guilt as I write that, but that’s how it is. And I feel like I need a paid job to justify having someone else care for him for more than one morning a week – even though I could easily fill that time in other ways.

Because I live in a town where it is surprisingly easy to get work right now, even possibly interesting and meaningful work.  That may not always be the case, so I feel I should take advantage of the situation while it is here.

And I have a beautiful wonderful friend who will care for Wren for at least some of the time while I work, so I feel like I should take advantage of her while she is her. Um, no, I didn’t mean it like that. I just know that Wren will be happy with her. Ah, easing mama guilt.

So there you go. Are you convinced?

I have applied for a job. I had to do it, but I am terrified of what will happen next.

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The other day I went to a local group meeting of the Australian Breastfeeding Association.  The topic was ‘Understanding baby’s weight gain’. It was inspired by the too-many mothers who are made to feel like they are ‘failing’ because their baby is not keeping up with those tricky baby weight charts, and often people are too quick to assume that the problem is the mother’s milk supply. It’s another example of the kyriachy’s refusal to believe in women’s bodies, much preferring ‘man’-made things, which can be controlled, things which come in shiny bottles, in clearly measurable quantities, with a nutritional analysis on the side of the label.

Here are some of my thoughts on the issues, based in my own experience of a baby with weight issues.  These comments broadly come in two categories:

(a) Keep it in perspective: Weight charts are political and weight is just one indicator of overall health.

(b) Sometimes there is something wrong and saying there isn’t won’t help. But neither will weaning.

So here goes:

(a) Keep it in perspective

Baby weight charts are political. By this I mean they are not some immodifiable guide given to use by the Goddesses. Rather they emerge from a human process which involves power and judgements about what is a ‘normal’ healthy baby – something which varies enormously, particularly across ethnic groups (though also within). When health professionals use the charts, they rarely have this process and associated considerations in mind. They focus on the numbers as absolutes and forget to keep it in perspective.

Outrageously, the graph still used by health professionals throughout most of Australia is based on old data from mostly bottle-fed babies in the USA. The growth of breastfed babies tends to slow down much more after 4 months – not as much as some suggest, but it still matters given the small amounts of weight parents are concerned about. Using the old growth chart creates unnecessary extra anxiety.

The World Health Organisation has a more recent, more realistic graph here, based on healthy breastfed babies from a range of countries. More background on the new charts is available here.

However, while these new charts are an improvement, they still need to be kept in perspective. Do they accurately reflect how all babies ‘should’ grow? No. They are averages. It is a rare baby that grows smoothly up the middle percentile line – they grow quick, then grow slow, then later quick again. Very few babies are average, and nor should they be. Someone’s gotta be small and someone’s gotta be big, and there is nothing inherently better about being either. Note that all the babies used to create the graphs were considered ‘healthy’ and by definition some must have been at the top of the graph and some at the bottom. [I am focusing on ‘small’ babies here, but a lot of this also applies to parents who worry that their baby is too ‘big’ (and I would even go so far as to suggest that people worry more about girls being too big than boys). This can also have negative consequences if their intake is restricted, when they might be genetically inclined to grow quickly early and level out later – or they might just be bigger than average forever and that’s totally TOTALLY fine.]

Getting back to ‘small’ babies, the worry about them is really very widespread. When Wren was losing weight, I came across sooo many mothers who had been through a period when they were told their baby or child was growing too slowly. For all of them, it had been a period of anxiety. Yet for most of them, that period had passed and their child had grown and developed into a ‘normal’ healthy child. The worry was for nothing.

What this demonstrates is that there is a unhealthy focus on baby weight. Weight is just one indicator of overall health. It is a useful indicator for health professionals, because it is easily, quickly measurable. They like it because it doesn’t depend on (highly variable) accounts from parents (what would we know after all?). However, as a parent of a child, you see them every day, you see loads of other indicators: mood, appetite, changes in skin tone, poos/wees, physical development, mental development. You know what? You don’t even need to weigh your child to know they are growing! (You also don’t need to measure their temperature to know they have a fever – but don’t expect a doctor to believe you on that one.) Are they going up in clothes sizes? Do people keep exclaiming “my how she’s grown!”? That’s all the proof you need. It’s a much healthier way to keep check than obsessing over every 10grams.

(b) Sometimes there is something wrong and saying there isn’t won’t help. But neither will weaning.

Nothing I have said is intended to suggest in any way that weight gain is never a problem and that we should pay no attention to it at all. When my son Wren started losing weight (note: losing weight, not just growing slowly) at around 7 months, almost every other parent I spoke to tried to reassure me that there was nothing wrong.  This was not helpful. The response of these well-meaning people was based on (a) the problems I’ve outlined above, (b) often their own experience, and (c) a real fear of acknowledging the possibility fact that sometimes there is something wrong with babies. We all love our babies and believe they are perfect and hope they will always be healthy, but skirting cautiously around it when they are not, like it’s some kind of taboo, IS NOT HELPFUL.  It is frustrating. Acknowledging that something might be wrong is sad and worrying, but it is not the end of the world, and gees it’s just better to know and deal with it than keep trying to believe everything is okay. It probably will be okay – though ‘okay’ might come to mean something a bit different – as long as you address it. And as a friend of someone in this situation: listen, don’t dismiss! [This also applies to problems with babies other than weight – I had a friend whose baby had a serious developmental delay and people kept reassuring her that there was nothing wrong, even when she herself knew there was – and it ended up being something which could be treated]

Ahem. So let me tell you our story.

Although it might have taken me a little while to put it all together – I was far from an anxious mother – I knew that Wren was sick. And I knew this from my daily experience with him, not because of the weight charts. He was miserable. He looked pale. He was doing sloppy poos far more often than he used to. He wanted to drink breast milk all the time.  He had stopped trying to crawl or pull himself up to stand. And yes, I noticed that his clothes seemed bigger and his body was getting more bony. So I took him to a child health nurse. She didn’t really listen to my explanations or concerns, perhaps assuming I was an over-anxious mother. She calmly got him on the scales, plotted his weight on the graph, then exclaimed “My goodness! He’s dropped right off the graph!” She needed the graph to see there was a problem – I didn’t. He hasn’t dropped off anything, I thought, this is my baby you’re talking about, not a line on a graph! Something’s wrong, like I told you. We were referred to a paediatrician.

The initial response from child health nurses and paediatricians was to question what was going into him. He was not yet eating much solids, but I was confident that he was getting loads of breastmilk. Despite my insistence that it wasn’t his intake that was the problem, something was going wrong inside, I was told to breastfeed less, push solids more, and supplement with a high calorie formula.

It was a frightening time. I was vulnerable and uncertain about what was wrong. If I had not been such an educated, confident breastfeeder, it is very likely that I would have followed their advice. But I am very glad that I didn’t. The doctor was ‘surprised’ when test results revealed that there were high levels of undigested fats in his poo. I told you so! It is going in! That fat is from my milk! It took many more tests and a few months – during which time he actually did very well, thankyou – before he was finally diagnosed with pancreatic insufficiency caused by cystic fibrosis. Babies with cystic fibrosis need breastmilk more than most, for the immune protection and because it is more easily digestable than any other food.

I really believe that health care professionals confronted with a baby with weight problems should be much more careful about their advice. While I was not specifically told to wean, I was never encouraged to keep breastfeeding and many things were said which could have undermined my confidence in my breastmilk. The initial assumption should be that breastmilk is best, unless there is some evidence to the contrary. When the first question that every nurse and doctor asks is ‘do you have much milk?’ this can build up to make a mother question whether she really is producing enough milk, as sometimes it is hard to tell. Health professionals need to be more aware of their own power and the vulnerable position mothers are in, when their children are not growing as they ‘should’.

When I later expressed my concerns to one of these health professionals, about their lack of support for breastfeeding, the response was: But we weren’t to know he had cystic fibrosis. Exactly. YOU DIDN”T KNOW. And yet you gave me advice which could have led me to stop breastfeeding which would have had negative health consequences for my child. It really should be assumed that babies with weight problems should continue breastfeeding, because if they are really sick, then breastmilk becomes even more important.

So I guess what I am trying to say with all this is: trust yourself more than your doctor. Most of what I have said comes from my own experience, which may be different to yours, so you don’t have to listen to me either.

I have been planning to post a rant against the mainstream health system, the attitudes of doctors in particular. I have had an unfortunate amount of contact with the health system since my son got sick.

The Australian health system is far from perfect, but you know what? It is fucking amazing compared to what people have to put up with in the USA. I just came across this tearjerking post which made me extremely grateful to live in a country with a (largely) socialised health system.

Some of the current debate in the US has been filtering through over here and I have been shocked at the amount of misinformation and scare tactics going on. If there is one thing that a market system is simply not good enough for (though I would argue that there is more than one thing) it is health. Everyone has a right to healthcare, its availability or quality can not be determined by income or employment. People in the US are dying because they are falling through the patchy web of insurance coverage.

The article by Natalie O’Reilly over at Hip Mama really hit me hard because her daughter Sophie has the same condition as my son – cystic fibrosis (though she also has other related conditions and the CF is worse than Wren’s so far).

When Wren began to get sick, he was losing a lot of weight. We were sent to many tests and specialists to find out what was going on. It was the most stressful time of my life. But one thing we did not have to worry about was money. All the tests were fully paid for by the government-funded public health system. They even paid for Wren and one parent (me) to fly to the specialist CF clinic in a capital city, and continue to pay for two trips a year (or more if needed). It is cheaper to pay for our transport, than to provide the specialists in our small town. Luckily Wren has not needed many medications so far. He is on daily digestive enzymes, and will be for the rest of his life. All medications and enzymes are provided extremely cheaply through our Pharmaceutical Benefits Scheme. We pay nothing for visits to paediatricians and other specialists. Emergency care and hospital stays would also be provided for free – I hope we’ll never need it, but it certainly provides peace of mind knowing that it is there for us. My son is getting the highest standard of care available.

It makes me feel sick in the guts to imagine being in a situation where I might have to decide whether to take to Wren to see a doctor based on whether we could afford it, or, as in Natalie’s case, whether it might risk our chance of getting health insurance cover.

I hope the US will come their collective senses. Quit it with your absurd and inappropriate free-market ideologies and look at the real people who have a right to health.

I live in a very breastfeeding-friendly community. Most mothers I know breastfed their babies. Until recently, I have felt supported in breastfeeding and never felt uncomfortable breastfeeding in public.  But shortly after Wren’s second birthday, I looked around me and found I am now the only person I know who is still breastfeeding a two year old. I feel I have entered new territory.

What I am doing feels quite natural to me. When Wren was born, I didn’t have any definite ideas about how long I would breastfeed him. There were times when it was hard and I would never have imagined I’d still be going now. But the thing I didn’t realise was how much the breastfeeding relationship changes over time. Breastfeeding a baby who is dependent on you as their only source of food is quite different from breastfeeding a toddler. Some things are more complicated, but mostly I find it less demanding.  If I had woken up one day and been required to breastfeed a small child, it would have seemed entirely weird, but the change is gradual and natural. For him, he is doing what he has always done; getting nourishment and comfort from his mother. To start denying him now feels cruel and artificial.

So why has everyone else stopped? Even mothers who I would consider ‘lactivists’ have weaned, or cut down to one (private) feed a day. In many cases it is related to pregnancy or the birth of a second child. Fair enough – I’m in no position to judge that choice. I don’t mean to judge anybody’s approach. I would just like to explore some of the reasons. If an individual mother (or child) makes a choice to wean, that’s their business – but if masses of women are feeling social pressure to wean (or are feeling unsupported in continuing to breastfeed) then that’s everybody’s business.

How much is early weaning due to social pressure? There is a high level of squeemishness and outright disgust in the general population about breastfeeding toddlers, even sometimes babies. Boobs are so ridiculously sexualised in our society, that people think there is something wrong with a child who can talk and walk still having a intimate relationship with their mother. This is not supported by WHO guidelines which recommend breastfeeding for two years and beyond if both mother and child still want it. Anthropological evidence suggests the average natural age of weaning is between 2.5 years and 7 years. I prefer the term ‘full-term breastfeeding’, which implies the normality of breastfeeding for a number of years,  to ‘extended breastfeeding’, which implies that this phase is being dragged out longer than it should.

I want to keep breastfeeding my son. Why?

  • Because breastmilk is the world’s most perfect food, the only true wholefood.
  • Because it supports his health while his own immune system is still developing. This is particularly important for us, because Wren has cystic fibrosis. Despite having a supposedly serious chronic illness, Wren is the healthiest toddler I know, and I can only put it down to the goodness of breastmilk.
  • Because it gives Wren a way to calm himself down when he get overexcited/frightened/angry, until he has developed the skills and emotional capacity to do that in other ways.
  • Because it’s  the easiest way to get him to lie down and have a nap during the day. I know several parents currently battling to get their wired two-year-olds to nap.
  • Because it means I always have a snack/drink on hand.
  • Because it is a convenient way to keep him quiet at crucial moments, such as when I am on the phone.
  • Because he LOVES it and it is a joy for me to see his happy face when a boob comes out. I know we won’t always be so close.
  • Because weaning would probably be hard work.

Having said all that, I don’t want to suggest that our breastfeeding relationship is always good and easy, or that I never say ‘no’.  There are times when he wants to stay attached for too long, or on and off all afternoon, and it is driving me nuts and I have to draw the line. There are times when I want my body back. If I can identify what he really wants, he will usually accept an alternative to breastfeeding – often he just wants my undivided attention or some quiet one-on-one time, and sitting down in my lap and reading a book is a pleasant alternative for both of us. I am teaching him that there are times and places which are not for breastfeeding, such as the supermarket and when I am eating a meal. He is accepting this easily in general, and so I know he is ready. I have also recently stopped breastfeeding during the night – separate post on this coming soon(ish)!

But back to the issue of social pressure. Despite all the very important reasons I have given for continuing to breastfeed, I am feeling social pressure to wean. By social pressure, I do not mean that people are actively telling me to wean, or ridiculing/punishing me for continuing to breastfeed. I know some people are unfortunate enough to have family or friends actively pressuring them to wean, but for me the effect is more subtle. Yet given the number of pro-breastfeeding women I know who are weaning, I believe these subtler pressures can be very powerful.

What do I mean, then, by social pressure?

  • When people keep asking ‘are you still breastfeeding?’ and ‘when do you plan to wean?’ Even without saying there is anything wrong with it, it makes me feel like my choice is under scrutiny.
  • The looks of surprise on strangers’ faces when I begin to breastfeed in public.
  • My partner is a big factor. He keeps asking questions about whether Wren really still needs it. I can convince him of it, but I still don’t feel as supported as I’d like.
  • When we are out – at playgroup, for example – and breastfeeding, the sight makes other toddlers ask their mother to breastfeed too. I feel apologetic, because my choice to continue breastfeeding is making their choice to cutback more difficult. I feel like I am breaking some sort of unspoken social contract to wean.
  • Having nobody to talk to about the challenges and joys of breastfeeding a toddler, at least nobody who is going through the same things.

In some ways, I find these subtle pressures more difficult to deal with than outright pressure. The rebel in me wishes those shocked strangers in cafes would be brave enough to express their ignorant views, so that I could defend myself. There is a part of me which definitely enjoys pushing boundaries, challenging conservative social norms, but I don’t want to do it all on my own. If I had someone to share my breastfeeding battles and triumphs, it would be much easier, much more fun.

I am finding myself becoming increasingly irritated with Wren’s requests to breastfeed, particularly in public. At times I think that perhaps this is a natural/biological response to trigger weaning, something coming from inside of me. But more likely, it is a response to the external pressures eroding my confidence. This is why I am spelling it out here. To confront it head on, and stop it eating away at me, invisible, un-named.

I will continue to breastfeed beyond two, beyond three, who knows? I would love to hear from others who are doing the same. What social pressures have you encountered to wean? How have you dealth with it?

Last week I was almost dying from need of a break, and I haven’t felt like that much, but it’s just really time for a break. I was feeling overwhelmed with mothering full time and pissed off with our isolating social structures. But this week, too many lovely options have been plonked at my feet. Or rather, one option I pulled together myself, the others burst forth from other mamas I know.

Let me share with you a beautiful alternative to childcare; a model which has been working for many groups in this town for some time. It’s called ‘playcare’.
You need: 6-8 kids
One paid carer. Anyone with energy and enthusiasm for kids will do.
Keen parents.
One morning a week, 3-4 hours, the kids all go to one house, to play and be cared for by the carer plus one parent. The parents take turns being the “parent-on”. They play, share morning tea (and possibly also lunch), and the other mothers get a morning OFF. And everybody wins. The location rotates every 10 weeks, to share the burden but avoid too much shifting round for the kids.

An alternative model (the second group I’m involved with) has no paid carer, but instead 2 parents are rostered on each week. It’s cheaper, but means everyone is doing twice the shifts.

I prefer it to regular child care because it’s grassroots community based, between friends. It builds community, as everyone spends more time together, understands better where everyone else is at, and creates more possibility for sharing child care and supporting each other outside of playcare.

It has disadvantages too. More time organising. Can’t just drop a kid off somewhere without doing any of the planning. And it cannot accommodate more than the most flexible job. This is an issue for me, as my desire for a ‘real job’ is growing.  The other childcare option that emerged this week was a Family Day Care spot, with a carer recommended by a friend. I have decided to put that off for now, not wanting to start too many new things at once.

I haven’t blogged about it yet, but Wren has cystic fibrosis. The main implication in relation to childcare is that he needs to take digestive enzymes with his food, anything that has fat or protein in it, which is pretty much anything except plain veg and fruit. It’s not difficult to do once you get the hang of it, but there are some guidelines to learn and it does require someone to pay attention to what he is eating.

The response to this at the first playcare group meeting was disappointing. People chose to limit morning tea to fruit and other foods which don’t require enzymes. Okay, so they’re accommodating him, but nobody was willing to learn about the enzymes or take on that responsibility. Afterwards, I felt really sad about that, alone.

The following day at the other playcare group meeting, the response was very different. People immediately expressed an interest in learning about his enzymes. They asked questions and had proactive suggestions about how best to organise it. It was heartwarming. It really made me feel supported.

Okay, so the enzymes are not the biggest part of managing the condition, they’re not difficult for us these days. But it really means something when people make an effort to not simply ‘accommodate’ difference, but to understand it and to share the responsibility in managing it.I feel concerned that a situation will arise in the first playcare group where Wren will help himself to something fatty another kid is eating and nobody will remember he needs enzymes, or if they do, they won’t know what to do. It certainly won’t kill him, but it’s not good for him.

I don’t want to be too hard on the first group.  One mother in particular was having a stressful day, she was in the middle of moving house, not in a frame of mind to take on too much more. And I did present the issue slightly differently to the two groups.

But let me say this: if you have a friend with a child with any kind of medical condition/ disability/ special need MAKE AN EFFORT to learn about it. Ask them about their needs. Offer to help. It means a lot, not just the practical help, but also the feeling of being supported, less alone.