My little rant yesterday seems to have hit a few chords – and I have to say I do love to get comments here, so don’t be shy!
I have been busy in the last few days trying to rationalise Little Man’s various special needs. We have been hobbling along managing his care for the last ten years, and I have hit something of a wall. As lovely as his professionals are, they are failing him because they are being lazy. They each look to their speciality, and try to find the simplest answer to a rather complicated little person. And the thought of getting together doesn’t seem to have entered any of their heads.
Enough is enough. I don’t know how or when, but I’m getting them around a table, even if it’s a virtual one aided by skype or some such technology. And I’m leading it. Oooh, that’s going to get some heads buzzing!!!! They are not going to like that one little bit. But you see, this is the extent of the situation:
Even if you can’t read the tiny writing (I just can’t spend hours figuring out how to turn a powerpoint diagram into a picture file wordpress likes I’m afraid!), know that the centre circle is my darling boy. Each and every other circle represents a professional. The few that have dashed lines are ones that have not seen him for a while or have discharged him… and as I write this I’ve realised that I’ve missed one out. There are 20 – 25 of these circles.
So I somehow need to sit all of these people down at the same time so that they all hear what I have to say simultaneously, and so that they are given the opportunity to brainstorm why my little boy is not well and how best to look after him!
For each of these circles I’ve created a diagram with existing diagnoses and treatment, name of professionals and frequency of visits, together with the questions I’d like answered in order to make him better. It’s been a labour of love, and has required a certain will of iron. I’m going to give each of them the full document in the next few weeks and months with a covering letter so that they can prepare themselves. And I am not wearing rose tinted glasses. If we are able to make this meeting happen in the next year it will be a miracle!
As an aside, this document is also going into Tom’s new EHCP… the government’s new system for special needs. I’m hoping that the weight of the really lovely people driving this new system in our area will make a difference.
And to finish, this is what Tom would like his life to look like:
Hope you can read it… As ever, I’ll publish, then make lots of little changes as to how it looks!
Oh yes, You the System, You the Bureaucrats, You the Jobsworths, You the Keeper of the Budgets, You who forget that your job is to Spend that money on those that need it.
You will always underestimate me and the others I’m lucky to count as friends, because You lack the Imagination, the Idea, the Notion that I might be Right.
I might be asking for the Bare Minimum.
I might be so accustomed to taking the Moral Highground, and Biding my Time, and Waiting, and Smiling that I will Always prevail.
Go ahead, Underestimate me,
Mother of Special Children
Yesterday I read a lovely blog post – lovely simply by dint of its honesty. These blogs are the ones I love to follow – those written by people who are moved to share their thoughts and their stories and who feel the pull of truth on their writing. Dan in this post found himself writing something that he did not like about himself, and he shared it anyway. His is an extremely well-followed blog, unlike my little corner of the universe, and people react to him with the vast array of emotions available to the human race. Some good, some bad, and some tremendously hurtful emotions.
So he answered them today – something I believe no blogger should feel compelled to do, but something that I believe most bloggers feel to be an integral part of this strange craft. I just read his answer today, and found it truly lovely. Having shared a darker part of his past yesterday with seemingly no compunction, no concern about how others’ reactions might affect him, he was far far more reticent to share a bright part of that past. Sometimes it’s harder to talk about something good we did, because we fear the idea that the good deed was a bargain with the universe: “See, Universe, I did a Good thing… now you owe me.” Doing something good makes us feel a better person, and at immediately guilt can follow – did I do this to feel good, or did I truly do a good thing. We are now in the realm of a philosophical discussion about altruism.
So here is my story. About finally having the courage to step out of my comfort zone… or actually, discomfort zone… and doing something I knew to be right.
We are taught from the youngest age, Don’t talk to Strangers.
We are taught from the youngest age, Be king to Others.
We are rarely taught the difference between these Strangers and Others.
Most of us bumble along, being kind to those most like ourselves. The old man on the bus who mumbles away to himself, possibly carrying a paper bag and looking unkempt? He remains a Stranger. Why? Because we are afraid.
For a long, long time, I have wanted to be Brave. I see the pain in people’s eyes, I see the dullness in their faces, and I want to Help. I want to offer a meal, an ear for a talk. Money leaves me feeling uncomfortable – often because I don’t carry any, more often because I would rather see a hungry person with a fully belly than…??? Fact number one in this tale… I have preconceptions, and I am stuck firmly in my comfortable, judgemental life. I don’t want that money to be used on drugs or alcohol. So the reality is that I am not giving that money. I am holding on to it while it lives in someone else’s pocket.
This dichotomy has always bothered me, and is the reason why I struggle to hand over money to people in the street.
That’s alright – nothing to stop me handing over a coffee, or a sandwich? Nope. Nothing at all. Except fear. Accompanied, I’m afraid, by excuses. After all, I have a baby in a pushchair, it’s not reasonable to approach a homeless person. I’m in a rush today. What if …??? That’s the big one… what if?
I’m working on it, ever so slowly. The cans of soup or dog food (none needing a can opener) added to my shop if I have seen a homeless person sat outside the supermarket… that kind of thing. But if truth be told, too little, too slow. (Because I’m not as good a person as I’d like to be.)
And then I am a mother. To three children, all of whom have disabilities in social functioning. All of them find it far more difficult than their peers to differentiate between Strangers and People I Know. One would never interact with either population, Two desperately wants to Help both populations, but is terrified of contact with either, and Three happily gets on with Anyone.
Stranger Awareness is what it’s called in grown-up circles. Stranger Danger is the term used in school. And it’s apt: in the last four months in our quiet suburban village, there have been three attempted child abductions.
For One and Three, this area is really very straightforward – when out and about, talk to Your People (family members, carers, staff members, people you know), do not talk to Strangers (people you do not know). For them, this is what is needed right now.
For my glorious Two, the waters are muddying. She asked me recently, “Mummy, I don’t understand. People always tell me not to talk to Strangers, but what if the Stranger is hurt? Shouldn’t I help them? Mummy it hurts me when someone is hurting, and I really really want to help, but if they are a Stranger, I’m not supposed to? I hate it Mummy, what should I do?”.
For Two, whose heart flows into her entire being, the pain of someone she can see is Her pain. Her intellect may remind her of Stranger Danger, but her Heart tells her, Help. The difficulty comes because she is incapable of determining truth from manipulation. Other from Stranger. And while I love her Heart, she is also still a very little girl, and very vulnerable. And as much as I hate to close her Heart at all, I need to protect her, and I need to teach her to decide who is Other and who is Stranger…
A couple of weeks ago, Darling Man and I took Eldest to London. A lovely day was had by all, though the two boys returned to the station hobbling and moaning about their feet!! We got on to the train, all smiles… a happy family having experienced a happy family outing (oh my, did I ever think that would happen!!!). And suddenly I overheard a lady crying on her mobile phone. I had noticed her sitting down, without more notice than I usually give to Others on the train. Yet here she was, clearly struggling to contain her emotions, clearly in distress.
My Heart wanted to help.
My Brain went into overdrive, analysing the situation – all of which happened in about one minute.
- She was clearly an Other, not a Stranger – well dressed, on a train obviously with a ticket, just a nice lady upset. And yes, my Brain is Judgemental, especially in analysis mode… not really something I’m proud of in this kind of instance, and yet probably necessary to most decision making. So approaching her posed absolutely no threat to me (or my child sitting with me).
- Darling Man was with me, so if I approached her, I need not even tell Eldest – he did not need me.
- Would I be helping if I went to see her? That was a big one. To intrude or not? Would she want her pain and distress to be acknowledged, or was she hoping it was going unnoticed?
Truly, that last point was my biggest if not only hurdle. And so easily, I could have chosen the easy option. She was trying to control those tears, she must surely want to be left alone. At the same time, her pain and hurt were screaming at me.
And I did find inside me to be a little Brave. To listen to my Heart a little more than my Brain. I stood, walked to her seat and leaned over to ask quietly, “Are you alright, can I help in any way?”.
She was a little “british” and tried to wave off all that pain, but her eyes were saying, “stay!”. So I asked her, “would you like me to sit with you?”. I suspect her brain started listing off the Other vs Stranger debate… and let’s face it, I’m a pretty safe bet: under 5 feet tall, with a slightly mad flowery dress, but nothing to make you run. Relief flooded her body; her shoulders dropped an inch or so; her mouth curved into a smile; a few tears escaped down her cheek; she said yes please.
We had a lovely chat until I had to leave. I did ask her if she would like me to continue with her, but she had calmed down enough to feel safe alone, knowing that someone was meeting her at her station. I met an Other, whose name I will never know. I learnt her life, which sparkles. A life with Happies and Sads, Ups and Downs, a sparkly life like so many others. And in that little moment of pain, I was able to sit with her and wait for the pain to pass.
I had no plans to share this here. It was a Good thing, one of the few times my Heart led me past ingrained fear of Strangers towards kindness to Others. And it was not done for pats on the back or congratulations. It was simply the right thing to do. But then I read Dan’s post (click on the link up above if you haven’t already), and I thought… he shared a moment of “not being Good”. It’s not that simple – he did what the vast majority of us would have done. And he was clobbered for that moment. I love that as part of his response he dared to share a moment of being Good (I’d like a super capital letter there), because that is as much a part of his Being as the moment when, in his words, he made the wrong decision.
So a little, counter-intuitive part of me is daring to share a moment of making the right decision. That, and just to put out there in the universe that while there may well be Strangers in our world, there are also Others.
There’s been a lot of chatter in the last few days about the pain suffered by people with Noonan syndrome. It’s something that has only recently been acknowledged by the medical profession, and a beautiful aspect of the internet is that patients and their parents communicate. Then, as a force to be reckoned with, we approach our doctors and tell them, and repeat over and over again that so many of them suffer chronic and severe pain that they eventually start looking into it, and even more eventually agree that it is definitely a characteristic of the syndrome.
Theories abound as to its cause. For years, Tom’s pain was dismissed as growing pains. If you could see his growth chart you would see quite how laughable this is. Here is a child who would scream in pain every single night for years and years and years, and yet there is no growth spurt on his chart at all. Just steady, tremendously slow growth.
After six years of this, I wrote a letter to all the professionals involved in his care, and one doctor responded, getting him referred to the chronic pain team. His pain has since been managed. It is far from gone, but thanks to medication and physiotherapy and a lot of pacing, he rarely screams at night.
This got me thinking though… so often when one of our loved ones is ill, or dying, or has died, our first question to the medics is a pleading, “but did he suffer?”. And reassurance is given and sought in the negative.
I am the mother of a child who does not know a life free from pain. Pain is simply part and parcel of getting on with moments. So what of me and what of him? Do we not then achieve the peace that comes from knowing no pain was felt?
The more I think about this, the less sense it makes. I’ve been lucky enough to endure a reasonable amount of pain at times in my life. From the time I was ten, my legs and joints were very painful – I was never without some kind of tubigrip or bandage or pain medication. I never really though twice about it. A few years ago I hit crisis point. I could not walk to the end of our road without pretty much collapsing, and I never achieved deep sleep due to widespread pain. I was diagnosed with fibromyalgia.
[I’m fairly sure this was misdiagnosed… since cutting out gluten and dairy, nearly all of my symptoms have disappeared – pain free is pretty cool! ]
So…. speaking from the other end, this is what I noticed.
Pain is not a life choice. It is not something that one willingly enters into. But at the same time, the endurance of pain is not actually that big a deal. You do what you can, you take medicines if they help, you manage the pain as best you can, and then you kind of get on with it. Your life can become very restricted, and that can impact on your mood. But it truly just … is. I never felt as though my identity had been taken away, I never felt as though there was no point in anything any longer. While I am sure some people are pushed to that, I think that those extremes of pain are in a different league, and that more likely is that there is another underlying problem causing that depression.
Pain from the perspective of the person enduring it is no fun. But it is much easier to endure it than to watch someone you love endure it.
Seeing my loved ones in pain, either physical or emotional is far harder (and dare I say it, more painful) than even the worst day of “fibro” pain I suffered (and there were days I spent constantly in tears because I hurt so much).
I come to think that our desperate plea for our child, our partner, our parents not to be in pain is far more selfish than we think it may be. The idea of pain is utterly dreadful, and our emotional hurt is something we desperately shy away from.
Little Man comes hand in hand with pain. And after ten years, I am seemingly quite cold hearted about it. I still insist he gets up, climbs the stairs and comes down again if he has forgotten his socks in the morning. Once he has told me two or three times that he hurts, I will ask him not to whine because I cannot take the pain away. I will administer medication, heat or ice packs and massage, but whining just makes me narky, and that’s no good to anyone. His pain is physical, and quite, quite horrid, but if I allow myself to hurt emotionally in reaction it will damage my ability to help him as his carer. It will also give him the message that pain is quite literally dreadful… something to be dreaded. And if you dread something, your body tenses up. And that will increase the pain. So in his case, it’s really a case of tough love, baby!
Sweet Girl and Eldest are much more complex for me. They experience a great deal of emotional pain. Anxiety, fear, dread, anger at times, confusion… all of these almost constant emotions lead them to be very fragile, and they just hurt. Tough love doesn’t help here.
I am trying for myself and for them to learn a little about acceptance. To embrace the fact that life is not about just happy. That it is a constant ebb and flow, and emotions and circumstances are all part of that ebb and flow.
Sweet Girl told me last night she was panicking (she is due to board at school and is getting nervous). My response a few years ago would have been to wrap her into my arms and try to make the panic go away… reason it out of mind. But last night I told her that it was ok. That she could just let it happen for a while. This new situation makes nerves appropriate, and we know that when she is nervous she tends to panic. So actually, panic was perfectly reasonable. We focussed on the idea that it would pass. She wasn’t entirely convinced, but we spoke of listening to a CD or reading an easy book to try and let the panic drain away without being fed by made up worries. She kissed me and went to bed, and was asleep twenty minutes later.
Eldest is supposed to be at school as I write this. We haven’t left home yet. Darling Man has had to take the day off work, because we had fears about Eldest’s aggression. He’s just scared. A lot of it is Aspie reactions to transition, and a good deal more is pain that his best friend is no longer there. And he’s big. So we’ve restructured our day because it’s the only thing to do. He is in pain, and I hate it. Writing this is helping me realise that in a similar way to Little Man’s pain, if I indulge my own pain at seeing him in this state, I am not helping him.
I will allow myself some tears on my way back home later, because tears wash pain away pretty well. But I’ll also remember that this day, today, was painful, and that’s ok. It will pass.
Pain just is. Those who feel it are usually very good at handling it. We need to accept that if there was pain it was experienced, and that makes up the sum of that person at that moment. It need not be bad or good, but I think it must be accepted and acknowledged. After all, if those doctors tell you that your loved one did suffer… what then? What changes? Not you, not your loved one, not how much you love them. But maybe you don’t feel quite so bad… well that’s some kind of anaesthetic, but it’s not real.
Face the real, because however tough it can be, it’s brighter and braver and stronger than any fiction or fantasy.
I have nothing to compare to, so I don’t know whether every family experiences this level of trauma, anxiety and stress upon returning to school.
Little Man just left after a week off for half term. The week has gone fairly well, but he’s constantly exhausted and has been in a fair bit of pain. This means that activities are limited and he’s spent a lot of time watching telly (cue some good Mum-guilt for not finding more creative, useful pursuits). He’s also lacking in friends… although he’s made some good friends at school, we have yet to bring them out into his extra-curricular life; and his brother and sister are masters at making him feel excluded. All in all, the holidays are not the best time for him.
But before this school year, school had become so sad and traumatic that he still dreads the start of term. Unsurprisingly, while his thinking brain may welcome going back to his new school, his feeling brain has not yet accepted that school is now good. So leaving this morning, when both siblings only start again tomorrow was tough. The taxi’s remarkable lateness didn’t really help.
I’m happy he’s now gone because it has been really challenging keeping him happy this week… but my heart is twisting a little because he is obviously very, very tired, feeling floppy and in more pain than usual. And I made him go to school.
Sweet Girl… golly that kid makes my heart explode! She is so much like me, in all the good and all the bad, and I often find myself tremendously frustrated with her. She comes to me with all her happies and all her sads, and I am immensely privileged to be her confidante… at the same time that role comes with a huge weight of responsibility. Despite a very typical teenage melting pot of hormones and mood swings, she brings super human effort to the management of her moods. Once again, I cannot feel anything other than tremendously proud of her, but it can be a little galling to have to come out of my frustration because she has managed to come out of hers!! She may be super human. I, on the other hand? Really, really just human 🙂
Sweet Girl is about to embark on a whole new adventure… To some, those three little words would spell excitement and anticipation. For Sweet Girl, thanks to her wonderful new school, it does… but added to excitement and anticipation are anxiety and trepidation. And come Wednesday morning that will no doubt escalate to blinding panic, but we will deal with that. Starting this week, my sweet little girl will be staying at school from Wednesday morning to Friday afternoon – oh yes! She will be boarding!
While this change will bring with it some difficulties, Sweet Girl has never liked the holidays. She thrives on the structure of school life, and finds it very difficult to occupy herself at home. In fact, she begged me to register her for the Young Writers’ Program on NaNoWriMo this year. I’ve given her a very achievable word count of 6000 to write by the end of the month. I’m hoping to be able to share her story with you all when she has finished (if she gives me permission, of course!). The conclusion is that I have no worries about her going back to school… and that gives me more relief than many of you might know.
And then we have Eldest…
My chest is tight, my head is whirling and the anxiety is mounting as we head towards tomorrow, when I must take him back to school. Do not get me wrong. The school is working incredibly well for him; he is cared for amazingly well, is learning and progressing; and I trust them absolutely. In his head, however, it is “a hell hole”. No matter how much I remind him that his phone calls to me in the last few weeks have been happy and full of good news, he simply cannot access those emotional memories. He cannot move past the fact that his friendships are not a “good” thing about school because he can keep in touch with them via Skype. He cannot accept the fact that the school had nothing to do with the departure of one of his best friends. He cannot comprehend that if he were to stay home during term time, he would not have the leisure time that he enjoys during holidays.
Talking to him is of absolutely no help. He is stuck in a very autistic logic… one that thanks to his intelligence is difficult to refute, simply because its only fault is its premise. And he refuses to accept that his premise is faulty.
Being silent is equally problematic. If I do not speak to him, I do not care, it seems.
Empathy is a very painful companion. I feel what he feels. And it hurts! He is absolutely in real pain, and the desperation creeping up on him is tangible.
shhhhhhh…. and I want him to go back to school as soon as possible…….
There is a part to blogging that rips something inside me. The demands that my own words make on me to write the truth. However horrible that may be sometimes. I can justify it, I really can. After all, if I admit to these awful feelings that I would rather a team of caring people (near strangers in some way) look after my son because it’s hard work doing it myself, then maybe another parent will read my words and realise that they are not alone. And I know (I think anyway) that I am not alone. But at the same time, the nakedness that follows is quite frightening.
How do I make certain that everyone… my readers, my family, my beautiful, darling boy… knows how much I love him? That in spite of the relief of not having to battle to get him into the shower, my true feelings about sending him to school are pride at his progress and thanks to the staff that are helping him achieve it?
How do I admit, once again, that I and Darling Man are insufficient? On our own, here at home, we cannot help him become the young man that he can be.
I wrote up above that I am really, really human. Two weeks of Eldest at home, and a part of me cannot wait for him to go back to school. We have had largely a lovely two weeks. But it’s also a game of treading on eggshells, pretending to have control that I absolutely do not have. Weaving a careful dance with Darling Man around him to ensure that our minimal requirements of him are met in order that we not have to put in place consequences that would absolutely come with massive meltdowns. And knowing that our ability to manage a true meltdown is possibly nil. We dare not test those waters.
Eldest is making amazing progress. I have to share here a youtube video that he made this week. His understanding of physics and electronics of sorts staggers me. While he spends far too much time on his computer, I do recognise that he is not wasting his time. I know that many people consider Minecraft to be a kids’ game. Look at his video though. This is a 13 year old boy who has taught himself at the School of YouTube to build circuits that allow his character to move up and down an elevator (I think it’s a transporter, but you be the judge). The limitations of my account here do not allow me to embed the video… but click on the link, it’s worth it.
Come Wednesday, I will be calmer once more. In the meantime, we have to navigate the next 30 hours or so. They will be filled with anxiety and anger. While he can manage to contain his anger and avoid physical aggression now (phew!), he has no concept of shielding others from it. And that’s where empathy and sympathy are nightmare companions. Not only do I feel what he is feeling, without the slightest ability to help him, but I bear the brunt of all that anger. And I hate it!!! It simply does not feel good!
So do share with me… “special” families, and more “normal” ones…. how does your back-to-school happen? Is it a non-event, or does it begin days before the actual event? Do you look forward to the children returning to school and if so does that come accompanied with guilt? Do you hate sending them back because you enjoy their company? How did your half term go?
Of course, no sooner had I uploaded my housewife post than reams and reams of thoughts, notions, ideas flooded into my head.. Some of them merit this little addendum.
Emotionally, irrationally a lot of the time, I feel that I am “only” a housewife. At times, the frustration, tedium, “smallness” of jobs such as laundry washing, cleaning, cooking, school runs etc threatens to overwhelm me. I admit to wanting to make a mark, to DO something.
And then, my brain re-engages.
Intellectually, my version of “housewife” is not the average. Again, let me say that I absolutely admire those who do that normal, valuable job. It should be valued far more than it is. My personal frustrations with that job title is that I am woefully bad at it – I work and work and work at it, and fail dismally every time.
That said, let’s get back to my “job”. I run a household (poorly, but it gets run). I have three children, all of whom have special needs, and this requires me to have an excellent grasp of language, communication in all its myriad forms, written expression. I need to have a basic but solid understanding of science if I am to help my son with his medical needs as well as he deserves. I need a good understanding of mathematics and budgeting. Organisational skills are imperative. Of paramount importance, however, is my need to have excellent people skills.
Firstly, when faced with autistic children, the ability to understand their strange reactions, pre-empt problems and stop them happening before anyone imagines there might be one is the difference between living and surviving (and even surviving can be a huge challenge). Secondly, managing a child with learning difficulties and processing problems requires infinite patience. There follows an intriguing level of people skills: trying to help each of those children understand that my management of each is different, but fair and tailored to their individual needs. A third layer just at home is fitting in Darling Man to all of this. He plays a very important and prominent part in our family life, but I am necessarily the glue that binds it all together – after all, he spends his day at work while I spend mine with the children. I must communicate anything that he missed in the best possible way to help him at the end of an often stressful day.
Then I must add the people skills needed to manage social services, education and health professionals. All people who are frequently on the defensive or convinced that they know my situation before they have even met me. Neither of those states is conducive to good listening skills. so once again, it falls upon me to do everything I can to help them truly understand the facts before them in order to get the right solution for each situation.
To say that it is a juggling act would be an understatement of monstrous proportions. And this post was not about detailing how I manage that.
What matters is that when any of these professionals read through my family’s notes, under my name comes two words: mother and housewife.
And they judge me by those two words. The first implies (well obviously!) that I must be emotional and over protective. The second implies that I have no knowledge of “the real world”, and for many it implies that I am uneducated and often of low intelligence. This is what infuriates me.
My choice to be a housewife was made initially to ensure what Darling Man and I felt to be our children’s best start in life. Circumstance conspired to hold me in that job to ensure their safety and well being.
As I said before, I am tremendously fortunate. Why?
Beyond my parents, three institutions:
They educated me. Thanks to them I can draft a letter. Thanks to them I have a vocabulary which quickly focusses the mind of the professionals across from me. Thanks to them I have the confidence to keep searching for solutions when many others would not realise their existence.
So this addendum comes to say that while all the forms assign me a small word full of implied meaning, school gave me the armoury to do the job regardless of how little it may be valued.
I am one of life’s very fortunate people.
I had a wonderfully straightforward, happy, loved childhood, and parents who put my education firmly in the headlights of their priorities. This philosophy, combined with some great accidents of chance, and enormous hard work on their behalf, led me to spend my formative years in some extremely good schools. The one that comes to mind especially today is St Mary’s, Ascot.
I spent four very happy years there, with wonderfully Enid Blyton like moments of madness, alongside a good bit of solid learning. One thing which always struck me was that we were being taught to become independent. We had the brains, and the education to do with our lives what we might choose. And while getting married and having children was far from maligned, it also was a long way off our radar. Few of us wanted to become “just a housewife”.
Life moved on. I am only slightly in touch with only one of my classmates from St Mary’s, more’s the pity. She is clearly a very successful business woman, with a lovely family – her updates on Facebook are a delight to read, and remind me of the time spent there on a regular basis. as for me, I was drawn to teaching… a strange career that is often misunderstood and rarely considered very highly by many. But it is a hugely satisfying vocation, and something I never regretted doing. Three years on, and I was teaching from home and awaiting baby number 1. Over the moon, thrilled to bits and tremendously excited. And never once did I consider myself to be “just a housewife” – after all, I was looking after the house and my baby, and doing a considerable amount of hours’ work each week. I felt extremely satisfied with my life/work balance, and all was good.
Baby number 2 came along, and I shifted a few hours, but largely things continued as they had been. I had plans already made up to allow me to continue working, whether another one or two babies turned up. It was a juggling act, but I was very much at ease with that juggling. I did not like the idea of being “just a housewife”… especially since the one thing I am really bad at is the houseworking!
We spent some time in France, during which I could not work – and again I was confronted with the reality that as much as I loved my family, I wanted more. The temporary nature of our stay there allowed me to “housewife” my way through a couple of years reasonably happily, but largely because I was making plans for my work when we returned to the UK.
My very good friend Stephanie has just celebrated 5 years of her blog, Was this in the Plan?...
I met her at our local children’s hospice only a few weeks after our return to the UK. All of my plans had been thrown to the wind, and I had no option but to be “that housewife”.
[It’s important to realise that I have extremely high regard for housewives. That I include in that title the ability to keep a lovely house, make good food for the family, keep husband and children on an even keel, ensure that there are clean clothes for everyone to wear, manage social lives, homework etc, etc, etc. It is NOT an easy job and is massively undervalued. I simply find it extremely difficult and my failure in this domain makes it unrewarding.]
All of a sudden, at the beginning of 2004 I was in a new house back in the UK. My Darling Man was finishing off a work project in Switzerland and I had three small children in a state of shock. Eldest was only just 4 years old, and having to readjust to living in England, a new playgroup and a very very sick baby brother. Sweet Girl was barely 2 and suddenly spending all of her time in hospital watching all sorts of people poke needles into that baby brother. Little Man was 6 months old and being attacked by leukaemia. Not only was I utterly unable to work, the house was far from neat, lovely and welcoming!
I did manage to buy a car in the midst of all this before Darling Man was able to come home, and we made good headway in dealing with that blasted cancer. Tubes made their way into our lives alongside the needles and chemotherapy; speech and language therapy appeared out of nowhere (speech therapy for a 6 month old??? – oh yes, to try and help with eating it turns out); genetics appointments, and cardiology appointments; cardiac surgery followed, failed and was eventually turned to open heart surgery. The roller coaster had well and truly begun.
Tomorrow is the 3rd November.
Tomorrow marks ten years since we were given the diagnosis of Juvenile Myelomonocytic Leukaemia (JMML). Tomorrow marks ten years since I officially became “just a housewife”.
Tomorrow, I embark on the last few days of half term. I need to prepare my two Asperger’s children for their respective returns to school (one will rant and rave and refuse to go, probably becoming rather aggressive in the process; the other has found the holiday pretty unbearable but will no doubt have a panic attack because she hasn’t been there for a week). Little Man is finally in a good special school where he is kept safe and allowed to learn at his own, slower pace. We have a minimum of five specialist consultants’ appointments before Christmas, so it’s another busy few weeks.
Tomorrow, as with every day, I will think about feed, food and maths and work out how best to keep that little man as healthy as possible – add to those five appointments a sixth to which it has been agreed he will not accompany me.
Tomorrow, I continue to advocate for his needs, and the needs of so many children like him. Not out of some selfless altruistic sentiment, I’m afraid. Simply because if I do not, no-one else will, and he will suffer as a result. If I can help others along the way, my heart will soar. Not least because if I am able to help another, I cease to be “just a housewife”,
I still have dreams. They are not what they once were. The last ten years have changed me beyond recognition – my understanding of life, my priorities, my principles, all those have changed. And I need these ten years to colour my future – I need that feeling of being “just a housewife” to be overcome by the good that I have done for my family and for others. At the moment, my dream is to become a dietician.
And embarking on a completely new career at the tender age of 41 is certainly not something that was ever considered possible when I was back at school. Going back to university, starting again in the middle of life was unthinkable. I’d like to think that maybe someday this message might make its way to the girls that now fill the corridors of St Mary’s – you can do so many things with your life. Some you can do now, some will follow a beautiful path. But life tends to throw curves in your path, and in some, your plans may be changed, delayed or made impossible. It’s rarely too late to think again, to dream again.
As for me, being “just a housewife” has shaped me in a way I could never have imagined. The people I have met along the way in this rather specialised housewifey world mean everything to me, and I am the richer for their presence in my life. So for now, I continue to be “just a housewife”, but leave myself open to the possibility of being something else as well…
I was invited by that wonderful friend Stephanie, to take part in a blog hop?? (the techy side of blogging is very new to me)… Here’s hoping this works!
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PS… The wonderful brilliance and appalling failure of blogging is that it allows me to fire off a post in the space of a few short stolen minutes… No time for editing. There is much more I would like to say here, but I would then need to condense or induce a comatose state in my readers. I just wanted to apologise for the ramblings and the things left (for today) unsaid!
Do click on that Linky link… there are some valuable people whose words merit your time. Actually, you deserve to take a glimpse into their lives – yours will be the richer for it.