Three cheers for Robert Plant - Picks Disease is sh*t

I just read how Robert Plant plays a community hall gig. So, a mega star plays a tiny gig - why is that enough to rouse me from my nesting malaise to blog again? It was not so much the gig as the cause he did it for. He was raising funds for Picks Disease.

It is not often that you read about Picks Disease - so it jolted me a little, seeing it written about when I have not really thought about it for so long. The shadow of this disease has fallen over so many of my life's great events, in the way that the absence of a parent can. My Dad's death was bad, but the illness that preceded almost defines heartbreak for me.

Seeing a man transformed, humbled and dehumanised as an illness insidiously took away all that made him great, then robbed him of his life. I say insidious as it was hard to say when the illness first started to take a hold. He was always an individual, a free thinker with a bit of a speech impediment - and the illness seemed to exacerbate these attributes until they became to define him - rather than his charm, wisdom and kindness. Instead of having a speech impediment he became incapable of communicating with those outside the immediate family as his grasp of language evaporated; a gentle disregard for convention over time became erratic behaviour and eventually he was at the mercy of a, sometimes, violent conviction that his needs must be met (think of a toddler with super human strength).

Picks Disease is a form of frontotemporal dementia - hands up anyone who knows that means? The likelihood is that if you are not involved with the medical profession or have first hand experience you will have no idea what it involves. The truth is to the outsider the illness outwardly resembles a mental illness - a broken leg elicits sympathy, mental illness normally prompts concern and fear. Friends found it difficult to cope - although those that owned up to their incomprehension and fear are the ones that I respected, rather than those who chose to judge and even criticise.

His illness was beyond distressing - it is a little known disease and we had no way of understanding it or predicting how it would progress. For many years we stumbled on, seeing all aspects of his character and everything that made him human dissolve until one day when I was sitting with him his finally forgot how to breath and he slipped out of this world. Someone said that it is a great comfort to be with a loved one when they die, but I disagree. However, I found it almost impossible to leave the room until the Doctor arrived an hour or so later in case even then I was letting him down on his final journey.

Even in mourning the illness dictates your actions. The first great step was to remember the man before the illness - the stacks of letters we received was a great help with that. It took years before we could look back and think of the amazing man he once was, unclouded my memories of illness - even longer before we had the strength to see him as a human with all his attributes good and bad. He was amazing and he was human and Picks Disease robbed him of all this and kidnapped our memories was we struggled to cope with the devastation of this illness.

I hope that by Robert Plant in some way raising the awareness of this disease, helping families get support and advice to deal with this - support that was so lacking when we were trying to cope.

[Sorry, I'm going to press publish before I edit this post out of existence. He died in 2002 but it still feels very raw trying to write about it]

Individual Preparation

Two friends have asked about what to buy to prepare for a baby - I even collated a Baby Preparation List from many on-line versions and annotated it. But lists are one thing, but what is the real gossip and personal insight? Well once I started a survey about the most useless piece of equipment and, by contrast, what was the best bit of kit bought and somewhat surprisingly the same products appeared on both lists.

There are some universal tips that I would offer like always have a tea towel or cloth in your buggy as you never know when you have something to mop up at a cafe or in the playground (think swings or slides) and buy a hand bag insert (the type being marketed at at non-Mums who may have more than one handbag) this can really help keep the snacks, wipes, crayons and kiddie paraphernalia separate, handy if you are going back to work and want to appear professional.

So much depends on what type of parent you are. The most expensive item you will probably buy is the push chair. I know so many Mums, including myself, who have ended up by buying a second when they realise what a duff choice they made first time around. A pushchair is not just a pushchair to some but a status symbol that can put your car to shame, I discovered this listening to the appropriately named iCandy Mums at the school gate. There are websites dedicated to bringing you the latest on which celebrity has been spotted with which buggy. Likewise Bugaboo have the most loyal of all owners, and they certainly do offer flexibility and functionality and the choice of endless optional accessories (summer and winter linings anyone?). Why did some of us get it so wrong first time around, well for one friend needed an off road stroller as she became an ardent walker when she became a Mum, others have baby number two so quickly that they need a double buggy almost immediately. Me? As a Mum I wanted something that was light and highly collapsible and reasonably ethical as out favourite outings were into London to see the latest exhibition so I needed something that I could pick up in one one had while I popped the Pickle into sling adjacent to my bag and get onto trains, buses and tubes. To augment the pushchair I found a decent sling is really important and to my surprise a baby carrying backpack. I would never have bought a backpack, but we were given one and it was fabulous for family days out; it had the space for all manner of random 'stuff' and snacks in the capacious pockets.


Sleep? What is your attitude to sleep? Some parenting books advocate black out blinds - if so rush out and buy - I lined the Pickle's curtains with black out material but in reality we were never rigid about adhering to darkness and silence. Now Pickle is the perfect party girl, comes anywhere with us and when she is tired she drops off regardless of light and noise.

Bathing? The Hubster asked me if we even had a baby bath - and the answer was no. This highlights how personal decisions are; when pregnant I had been to the Museum of Decorative Arts in Copenhagen and seen a display about how the design group Normann came up with the final design for their silicon washing up bowl and so guess what I bought for a baby bath? Yup, a designer washing up bowl that worked perfectly and has not gone to waste when she grew too big and shared a bath with me.

Not only are buying decisions personal, but they are subject to irrational prejudice. Dummies are recommended by FSID and other highly credible sources, but somehow I could never bring myself to buy one. I know some Mums who find the idea of second hand or hand me downs as just not right  where some Mums swear by eBay and Freecycle. We were lucky that we have an excellent toy library nearby - so I could test before I bought; I discovered that the Pickle never got on with Activity Centres (and it was not a very stylish coffee table) and as Bumbos seem to be indispensable for a whole six weeks of development time it was great to borrow one for just that period (any other uses you can think of for a piece of molded plastic? a primary coloured plant pot?).

Few Mums know ahead of the birth if they will be able to breast feed. Fortunately the Pickle was a natural feeder and so I am really glad that I did not invest in bottles - in the same way that buying an expressing machine in advance would be a waste if your babe will not latch on. It also effects what baby bag you buy. Often change bags vary from other bags just by having a removable changing mat and have insulated pockets for bottles. I had a funky little changing mat that included pockets for nappies, wipes etc that could transfer from bag to bag and I just had to go out and buy myself a capacious leather bag that is still serving me well with the Pickle aged almost five.

I economised on not buying much that was disposable and used my initiative to avoid buying many gadgets. Did I ultimately save? No way, when I bought I tended to buy organic and I enjoyed serious retail therapy when it came to dressing my little doll darling and always made sure that we had plenty of books and arts materials rather than waiting for birthdays and Christmas. Birthdays, Christmas and Pocket money...that is a whole different debate!

Confessional or Slander?

What do you write about on your blog? Mine is all about family life - but equally there are still things that I hold from discussing. So many bloggers state that blogging is a form of therapy. There is even an option to Blogonymous if what we have to say is too personal to be done from an acknowledged site. However, I was really stunned by Family Affairs post on Freedom of Speech, which has inspired this musing.

Please read the Family Affairs post and offer support if you have the time.  Her ex is threatening to withdraw support if she continues to blog about their marital breakdown - which seems pretty blimin awful. There are laws governing slander and defamation, but aside from things getting legal there must be a case for being allowed to be subjective - or to put it another way an argument always has two sides.

Still I got a shiver of dread when my Aunt showed an interest in my blog, as my Mum does not normally get mentioned in the most glowing of terms. The Mumster would be upset if she saw what I wrote, but I do try to be balanced and write about my response to her actions rather than take a condemning look at her personally. Still, should I write about her at all, if it is not positive. You know the maxim, 'If you don't have anything nice, don't say anything at all'. But then, my views have validity on my own blog too, so I continue to write.

Then are there some subjects that are just too sensitive or too embarrassing? I guess everyone has their own 'blog identity' that dictates how personal their posts are. Some relationships may just be too sensitive discuss in public, but how about issues. I have tried to be very open about my miscarriages and subsequent struggles to conceive as I believe that silence on the subject only served to reinforce the isolation you feel when afflicted.

Many Mums suffer from post natal depression and motherhood can open up cracks that we have successfully papered over when we have got on with our careers and made great home lives.  Some of the bloggers I most respect have written about their own struggles to combat their emotional concerns; do their posts make me think that they are weak or otherwise less worthy? Far from it! I respect their courage, strength and integrity. I love reading The Moiderer and Sleep if for the Weak. I also have huge respect for the writing and campaigning on Speaking Up - their badge has appeared on many respected blogs further bringing issues around mental health and well being to a wider audience.

I guess it is good to consider what and why we write. I really agree with Family Affairs that her ex should not bully her into stop writing about her own life from her perspective. But personally, there are still a few relationships and issues about which I am just trying to work out what I really want to say and how to find the words to write about it. I hope that in time I can find words and the style to address these remaining issues so that I can find renewed insight and possibly,  hopefully, help somebody else who may be wrestling with similar issues.

I'm Cross

I had the most  perfect weekend with extended family. The Pickle was on amazing form, so I had that smug Mum glow. How can your heart not melt she is so cute? She was playing happily when she asked Grandma to help and when Grandma admitted defeat saying that she was stupid Pickle comforted her saying, 'Grandma you are not stupid, you are good at lots of other things.'

So that is why I am so cross! Three of us in the close family (one honorary family) are pregnant and we were chatting about excitement and plans. It just occurred to me this morning that all plans seem to be eased by helpful Mums. I thought about it when I was doing my duty and trying to call my Mum for a chat - as she would rarely pick up the phone to me. Why have I had not had one offer of help from her around Beanie's birth? I was in hospital for 10 days over the Pickle's slightly traumatic arrival. I don't even know when and if she will bother to visit.

I normally rationalise that it is her loss. Besides, if she was around she would be more of a liability and the Pickle is not really comfortable with her. But, still I am cross, upset and pissed off. There are tonnes of us with crap Mums, and we can't blame any fault in our lives on them (well, I can't she has never been actively malicious) - it would be so good to have a Mum who is a support rather than a continual disappointment.

How would she feel reading this? For a start, she would not, unless it is printed in full in the Daily Mail or Telegraph she thinks that writing is a total waste of time. But imagine she did come across it, she would be devastated and that would be crap; as I said, she does her best and is not actively nasty, she is just either - at best - blinkered or at worst selfish. I'm seven months pregnant and emotional and I feel quite justified in feeling upset and cross!

Dads

This blog is straight off the cuff - my preggy balance has gone awry and I managed to fall in a stream yesterday. It was more comedy than harm but it somewhat threw my day! At least the river was muddy as I waddled back home otherwise rather than looking like the abominable mud madam I would just have looked as if my waters had broken. But then again, since when did I really care about what I looked like? Anyway, back to The Gallery and Dads and my instant response to a great title.

Hubster, you are a great Dad. Two reasons, firstly because you love it and secondly because you look up to the perfect role model in your own Dad. You play the same silly games as he did, and view being a Dad as an active and important role rather than one where the main duty is fulfilled at conception.

But, ultimately parenting is about partnership. My in-laws had a successful 60 year marriage during which they brought up five wonderful and independent children. As Mum and Dad they have their own approach, but they stood together and reinforced the values and behaviour that they believed in. Equally neither of mine had a clue, too happy with each other to allow parenthood to intrude - if one had been interested maybe things could have been different; but we muddled by and the house at least was filled with love not conflict.

Yesterday morning the Pickle had a turn, normally it is me who has to deal with it, but instead the Hubster was on hand and I watched as he 'put his foot down'. It was almost like looking in the mirror: no messing, no shouting just the promised follow through. We have different approaches to life but in parenting our approach is almost scarily identical. Poor Pickle, no chance of trading us off against each other - is that emotional abuse, or consistent parenting I wonder?

Not all marriages survive - but that does not mean that parenting inevitably stops being a partnership game, or equally that the sole carer will do any the worse job than two parents together, it just makes it tougher. The Hubster has two children by a previous marriage (over for more than a decade before I turned up - and yes, he is that old) and seeing this dynamic can be heart wrenching. My step children adore their Dad and are in constant contact, but seeing their approach to emotional issues it is clear that there is some form of short-circuit in there. As happy as we are, there will always be residual heartbreak that we are at heart a somewhat dysfunctional family.

However, what we have, living at chaos cottage on a daily basis, is all about contentment. A fantastic Dad and Hubster, me, the Pickle, the Manic dog, fluffmonster cat and chookies. I know that everything I do is informed by the support of the Hubster, and he has made the most active decision to be there and be caring - and that means everything to us. We are a fabulous team - and three cheers to our team leader, the Hubster! xxx

Contentment

So pleased to see Josie back on her feet again and the writing workshop back in operation again. I have missed it! Click on the link below to find out more about it.

There seems to be a running correlation between contentment and the comfort of my shoes. I teetered my way through my twenties in a succession of diva shoes and pairs of fabulous boots, from one party to another cultural opening, holidaying across the world in any number of glamorous destinations, always just before the destination became known as trendy. Days were spent dashing from meeting to meeting, both at home and abroad, evenings merged into nights as we drank and smoked our way to dawn sorting out the worries of the world and disentangling our complicated loved lives.

It was exciting and never dull, but was I content? No. A fantastic phase to have live through, but we need to fast forward in my life to find contentment.

Next pair of shoes are my Ethletic trainers. Fair trade, organic and generally really quite cool. The trainers see me settling into my new married life in Reading, discovering new interests and meeting new people. I have given up city life for a dilapidated cottage, garden and long walks and I love it! I still pop into London for culture and old friends, but I always return to my cottage sanctuary. Content? Yes, I have find my niche.

Roll on a few more years, and I am heavily pregnant and the Pickle has just started at school. The glamour has evaporated and the high heals have been thoroughly relegated to the back of the cupboard and out come the old trainers with Velcro fasteners. I don't really care what my shoes look like, so long as I can get them on comfortably as I am fast loosing sight of my toes. With these trainers I can keep on going and enjoy my walks with the dog and relish the constantly evolving progress of spring into summer.

I don't have the high life but I do have complete happiness. Beanie the bump wakes me first with his loving kicks, then a little later I hear a bump, crash, crash, crash and Cousin It appears. She clambers into bed, and I stroke away her hair to uncover the Pickle. I slowly come around from sleep in a full family cuddle: Hubster, Pickle, Beanie and I. Content? Blissfully!

I don't need glamour, excitement and beautiful shoes to feel content. I feel as if life has a Sarah shaped hole just there ready to welcome me.

Is contentment all about selling out on style? No, it is about realising that life is about more than just the highlights. The French talk about 'feeling good in your skin' well, for me it is more about feeling good in my own shoes. Well, comfort and contentment can also be infused with a little glamour and humour. After all, look at my slippers.

Why I am a Mum orientated Lactivist

Isn't it funny how a few comments can make you aware of your own prejudices. I was chatting to  young family member and suddenly he just clobbered me with a few really daft comments. I knew then how much I cared.

We were talking about his impending fatherhood and breastfeeding came up as a subject. He said that, obviously breast is best, but he did not want to see the Mum with 'droopy baps' (I quote) and besides neither he, nor his 3 siblings, were breastfed and they turned out okay. I almost spluttered that maybe if he had been breastfed he may have had some more sense - but I resisted.

Breast is best - there is no doubt about that. It protects both Mum and babe, it is free, no need to sterilise equipment and it is on there on tap. I appreciate this is tempered by the fact that I never had any difficulty with breast feeding and despite being a well endowed old bird (41) my 'baps' are still remarkably pert despite gravity and extended feeding (although I gave up publicly at a year).

I know though that breastfeeding is an emotive issue. For non parents it can be a taboo, there is little reason to form an opinion on breastfeeding until you have a baby, and in our culture breasts are either very private or highly sexualised.  I breastfed where ever I needed to, but always managed to find a quite area and used either a scarf or a sling to give us privacy and discretion . To be honest though, I have never too worried about the opinions of complete strangers but I do not impose my values.

I also care deeply about what Mums have to go through. One friend started to worry about feeding while still pregnant, having heard about the traumas that it may possibly cause, and another talks about sitting at a breast feeding clinic in a local church biting on a bit of rope as a way to try and combat the pain. Breast may be best for all concerned, but not at the expense of the vital bonding experience if it is going to cause undue stress.

That makes me think of another attitude that has failed to impress me: if a Dad gives baby a bottle it helps him bond, therefore, formula is better. Is feeding the only way that you can bond? The Hubster found his niche with burping (in this case winding the Pickle, no comment on his manners) - something he could excel at and a role that was very much his. This task was every bit as important as feeding and as he cuddled and stroked to relieve the wind he could bond over burping (seemed appropriate) and I could breast feeding secure in the knowledge that it was a win:win situation.

Is a Mum a better parent because she can breast feed? Certainly not - although being able to have milk on tap for the night time feed without having to get up and make up the formula certainly helped my energy levels. A good parent is one who takes the time to find sort the real facts from myths, suppositions and scare stories, who is prepared to acknowledge their strengths and weaknesses and is strong enough to seek help or advice when needed. While breast is best, if despite best informed efforts it is still not working I can't believe that any Mum should suffer and should gladly, and without guilt, find the best formula for their baby (I do have a prejudice here, I can't work out a good reason to use a Nestle formula but that is a whole different story).

I hate the way breast feeding has become a political issue, it deeply annoys me that the Daily Mail writes with glee about how 'Feminazis' are terrorising Mums into breastfeeding and that standing up to 'pro-breastfeeding propaganda' is a virtue. Bollocks, why polarise the debate along political lines? A Tory has the right to breast-feed as much as a socialist can use formula. Also feminism is a debate that can discuss and inform all areas of life, and there is a huge potential for feminist debate around the subject of objectification of the breasts (or as my young relative would put it, about what are baps are there for). However we should be able to consider breast feeding on the basis of the pros and cons the health and relationship attributes for Mum and Babe without becoming dragged into this tangential debate.

Do I hold a wishy washy belief? No, for me it is about balance and, if well informed, Mums can make up their own individual decisions, because when it comes to their child they really can know best! Can I be a lactivist who supports a Mum's decision to bottle feed? I don't care if I am allowed but that is my decision and I will stick by it!

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Further Reading

Here is a starting point for help for breast feeding La Leche League offer great support as does the NCT through their website and a network of local councillors the NHS also actively supports it.

Here is an alternative view that this blog elicited from Delighting in the Detail aka @Sunflower26
This is a great post too from the perspective of one Mum who has a babe with food sensitivities Sisters n Cloth - Breastfeeding a baby with food sensitivities
Here are loads of links from Baby Friendly News on breastfeeding (which even has a link back here)