The great difference between life before Sofia and life after Sofia is this:
I spent my twenties making plans for a life which was always tantalizingly just around the corner of recovery. Each cycle of relapse and remission would end up the same way. I would climb slowly out of a bad patch, rebuilding my shattered identity. Then eventually I would reach the peak of the cycle: a week or two of exhilaratingly unprecedented energy levels. And, giddy with new horizons I would inevitably think that finally, this was it. I’ve turned a corner. The trend must be upwards now. This time next year I’ll be better, and the next year a little better again. So where’s the party? What thrilling career can I embark on once I get my life back? And then the relapse would creep up on me all over again. Back to square one. And I would abandon the course I hastily signed up for. Put the latest fantasy career back on the back burner. And steel myself for another stretch of solitary confinement.
Ever since the age of 18 I survived on this bitter diet of deferred hope. Waiting to begin my adult life. And I hit my thirties and realized, after a spectacularly bad relapse, that it was never going to happen. I wasn’t ever going to grow up, in the sense of becoming someone with commitments, responsibilities and a public persona. I was just going to grow old. Have more grey hair and wrinkles after each round of relapse and remission.
It felt like a bad dream that I couldn’t wake up from. Often I had the feeling that I did exist as a normal person somewhere in a parallel universe, if only I could pinch myself awake from this surreal repetition of rebuilt hopes and shattered dreams.
Now that I have Sofia the relapses and remissions are still there but the nightmare is over I have all the responsibility and commitment I could ask for, if not the public persona. My life is no longer a dream of the future that comes crashing down around me with every setback. Sofia remains through the good times and bad; ME can’t abort her now. And I’m OK about time passing by, about growing old. When I think of five years ahead it’s to wonder what Sofia will be like when she’s six years old. To imagine how much more I’ll be able to share and communicate with her than I can now. How much joy she’ll give us. Not about growing old without ever having had a life.
I no longer want to pinch myself awake to escape the here and now. That is the biggest gift of all. I wouldn’t say I’ve fully accepted ME as a life sentence. Or that I have given up the Siamese twins of hope and disappointment about recovery altogether. It’s just that time is less marked by their vagaries. Instead time now marches to the brisk tune of Sofia’s incredible blossoming and becoming and the challenges that lie ahead for me as her mum.
Saturday, December 01, 2007
Wednesday, November 28, 2007
Lego Rocks
It’s an exciting time. What were once random bits of plastic have become potentially interlocking units of an infinately metamorphosing whole. Sofia has had her Lego farm for 6 months but is only now learning how to stick the blocks together and build things with it. I think my own psycho-motor capacities are developing too. She asked me to make a house and instead of my usual chaotic assembly of blocks I found myself thinking through beforehand the best configuration of blocks to produce a window, a doorway and a roof too and then executing my vision. She was impressed. I felt triumphant; like a Dad who’s just knocked up a rabbit hutch with his bare hands. And all from the supine comforts of the sofa (from which I’m barely able to get up and make a cup of tea at the moment).
Tuesday, November 27, 2007
On Thinking and Doing
The thing about being a mum who depends on others to fill in the gaps in my mothering is that I do the headwork while relying on them to do the legwork. It’s not an easy or comfortable, or natural division of labour. For any of us. And by “them” I mean mostly my mother or my husband, M. My nearest and dearest. Suddenly I’ve pinned it down: this is what sucks the most about being a mum with ME.
It was last week’s controversial ITV documentary by Paul Watson about a man’s deterioration and death from Alzheimer’s that got me thinking about this. In the early stages of his disease, his wife Barbara would complain she was already losing Malcolm. As the disease ate away little holes in his brain he would forget his words in mid-sentence, or forget where he was going. Like many PWME I can relate to that level of cognitive dysfunction. M tells me that when I’m succumbing to a relapse I become not only physically incapacitated but, just as frustratingly for him, I become a zombie too. A dull stare on my face replaces conversation at mealtimes. An indifference in the face of decision-making replaces my usual pro-active planning. I disengage with the urgent practical tasks of childcare that we share, at a mental as well as a physical level. And that’s what lets him down the most. I wish I had a link at hand to show it, but I do know that research has shown serious shortages of blood flow to the brain of PWME which would explain cognitive dysfunction probably on a similar scale, if not exact nature, to early Alzheimer’s Disease.
Yet that kind of mental detachment is the opposite of the image that I, and everyone else, has of me as a mother. I simply can’t allow my brain to let me down. It’s the best asset I’ve got. My physical limitations far outweigh my mental ones. I must have less than 10% of the muscular/aerobic endurance of a normal mum. I can’t lift, I can’t carry, I can’t walk more than a couple of hundred metres, I can’t stand more than 3 or 4 minutes, I can barely climb stairs. When I say can’t, I don’t mean it categorically. Rather that doing these things so depletes my body’s reserves that afterwards I’m severely incapacitated for the long recovery time needed to get my body back to baseline functioning.
So in compensation, if I want to be any kind of involved mum, my brain needs to work overtime in planning and co-ordinating the tasks of motherhood. My self-assigned role is to keep on top of things. The timing of Sofia’s feeding, changing, sleeping and playing as well as pacing my own requirements for regular nutrition and rest (It’s like they say on the aeroplane: “in case of emergency, fit your own oxygen mask before putting on your baby’s”). Because when we lose the thread we quickly face total family meltdown: Sofia in a hysterical tantrum, me gasping with exhaustion on the sofa in a low blood sugar crash, M feeling abandoned and alone.
So life has become one long time/motion study, like in a 1930s scientifically-managed factory regime. I separate the thinking and the doing of motherhood so as to make my doing as energy efficient as possible and plan which other bits of doing to delegate (sensitively, if possible) to those who pick up the pieces. So, for example, if I have to get up and go to the next room to get nappies I automatically scan my immediate environment for objects that need to go back in that room. That way I maximise the value of the trip (POD or Permanent Object Displacement being the chief activity of toddlers). And during our “nap” if Sofia is going out afterwards I use the quiet time to engrave a mental list of items needed in her bag, as well as a schema of which items are in which room, onto my brain. Then I can then pack the bag (drink, snack, nappies, wipes, plastic bags to contain accidents, spare knickers, suncream, sunhat, cardigan, books in case of boredom,) with the minimum legwork and try to surmount that classic ME mental-blank-when-I-enter-a-room-and-can’t-remember-why syndrome.
But no matter how carefully I ration my tiny battery of energy there’s always the unexpected poo in the pants, or grazed knee from a fall that demands immediate action when my fuel tank is empty. Sofia’s needs can’t be entirely programmed. I can’t be the dependable mum, scooping Sofia into my arms whenever she gets into a scrape, that I’d like to be. I’m too often beached in her times of need. I feel woefully inadequate when it happens. And so I try all the harder to compensate. I try to give extra love, attention and engagement from my default posting on the sofa. And I try even harder to pre-empt chaos next time through by rational thinking.
I go into over-drive on the thinking in order to compensate for my lack of doing. This is otherwise known as being a bossy control freak. It doesn’t endear me to my nearest and dearest. It doesn’t allow me to inhabit the sick role with grace as I sit there on the sofa giving orders while they others do the work. It doesn’t do much for my self-image.
I hate it. It’s not me. But is there an alternative to this division of thinking and doing? People tell me to chill out, stop thinking so much, accept that I need others' help. But then when my brain really does turn to pulp in a relapse and I lose the plot it feels to everyone, including me, that there is a void where mummy once was. It feels like the ultimate let-down to those around me. So I keep on thinking, planning and organising harder than the superest super-mum who runs her family like a company director. Despite the holes in my brain. Because that’s the only way I know for a sofamum to get by.
It was last week’s controversial ITV documentary by Paul Watson about a man’s deterioration and death from Alzheimer’s that got me thinking about this. In the early stages of his disease, his wife Barbara would complain she was already losing Malcolm. As the disease ate away little holes in his brain he would forget his words in mid-sentence, or forget where he was going. Like many PWME I can relate to that level of cognitive dysfunction. M tells me that when I’m succumbing to a relapse I become not only physically incapacitated but, just as frustratingly for him, I become a zombie too. A dull stare on my face replaces conversation at mealtimes. An indifference in the face of decision-making replaces my usual pro-active planning. I disengage with the urgent practical tasks of childcare that we share, at a mental as well as a physical level. And that’s what lets him down the most. I wish I had a link at hand to show it, but I do know that research has shown serious shortages of blood flow to the brain of PWME which would explain cognitive dysfunction probably on a similar scale, if not exact nature, to early Alzheimer’s Disease.
Yet that kind of mental detachment is the opposite of the image that I, and everyone else, has of me as a mother. I simply can’t allow my brain to let me down. It’s the best asset I’ve got. My physical limitations far outweigh my mental ones. I must have less than 10% of the muscular/aerobic endurance of a normal mum. I can’t lift, I can’t carry, I can’t walk more than a couple of hundred metres, I can’t stand more than 3 or 4 minutes, I can barely climb stairs. When I say can’t, I don’t mean it categorically. Rather that doing these things so depletes my body’s reserves that afterwards I’m severely incapacitated for the long recovery time needed to get my body back to baseline functioning.
So in compensation, if I want to be any kind of involved mum, my brain needs to work overtime in planning and co-ordinating the tasks of motherhood. My self-assigned role is to keep on top of things. The timing of Sofia’s feeding, changing, sleeping and playing as well as pacing my own requirements for regular nutrition and rest (It’s like they say on the aeroplane: “in case of emergency, fit your own oxygen mask before putting on your baby’s”). Because when we lose the thread we quickly face total family meltdown: Sofia in a hysterical tantrum, me gasping with exhaustion on the sofa in a low blood sugar crash, M feeling abandoned and alone.
So life has become one long time/motion study, like in a 1930s scientifically-managed factory regime. I separate the thinking and the doing of motherhood so as to make my doing as energy efficient as possible and plan which other bits of doing to delegate (sensitively, if possible) to those who pick up the pieces. So, for example, if I have to get up and go to the next room to get nappies I automatically scan my immediate environment for objects that need to go back in that room. That way I maximise the value of the trip (POD or Permanent Object Displacement being the chief activity of toddlers). And during our “nap” if Sofia is going out afterwards I use the quiet time to engrave a mental list of items needed in her bag, as well as a schema of which items are in which room, onto my brain. Then I can then pack the bag (drink, snack, nappies, wipes, plastic bags to contain accidents, spare knickers, suncream, sunhat, cardigan, books in case of boredom,) with the minimum legwork and try to surmount that classic ME mental-blank-when-I-enter-a-room-and-can’t-remember-why syndrome.
But no matter how carefully I ration my tiny battery of energy there’s always the unexpected poo in the pants, or grazed knee from a fall that demands immediate action when my fuel tank is empty. Sofia’s needs can’t be entirely programmed. I can’t be the dependable mum, scooping Sofia into my arms whenever she gets into a scrape, that I’d like to be. I’m too often beached in her times of need. I feel woefully inadequate when it happens. And so I try all the harder to compensate. I try to give extra love, attention and engagement from my default posting on the sofa. And I try even harder to pre-empt chaos next time through by rational thinking.
I go into over-drive on the thinking in order to compensate for my lack of doing. This is otherwise known as being a bossy control freak. It doesn’t endear me to my nearest and dearest. It doesn’t allow me to inhabit the sick role with grace as I sit there on the sofa giving orders while they others do the work. It doesn’t do much for my self-image.
I hate it. It’s not me. But is there an alternative to this division of thinking and doing? People tell me to chill out, stop thinking so much, accept that I need others' help. But then when my brain really does turn to pulp in a relapse and I lose the plot it feels to everyone, including me, that there is a void where mummy once was. It feels like the ultimate let-down to those around me. So I keep on thinking, planning and organising harder than the superest super-mum who runs her family like a company director. Despite the holes in my brain. Because that’s the only way I know for a sofamum to get by.
Wednesday, November 21, 2007
Terrible Twos
My darling girl,
You are quite the drama queen. They even say at nursery, with a chuckle, that your diminutive size and cherub-like features belie the power of your lungs and the strength of your purpose when crossed. You’ve had your tantrums for a while now, long before the clichéd Terrible Two age. But now they are intensifying in duration, in pitch and in your sheer resolve to have your own will.
Take the other day at the doctor’s. The adventure began so promisingly. It was first time I had taken you there all by myself. You co-operated cheerfully all the way – up the hill, into the carseat, out again, into the surgery, up the lift – all on your own steam and in your own time. I was puffed by the time I sat down in the waiting room but the doctor’s reliable lateness gave me pause for breath. And I was so proud and grateful that you were a clever girl who played nicely with the toys in the waiting area as I watched two stressed out mums trying to stop their boisterous boys from beating each other up.
The doctor said you were very good as she examined your throat, nose and chest and declared your cough was nothing serious. But then she said Goodbye and called in her next patient before you had quite finished playing with the beads on wires in her room. You paid no attention to her cheery “Time to Go, Sofia” and so she left the problem of getting you out of there to your mother. You uttered a piercing shriek at the mildest suggestion that we might now go home so I knew further short-term negotiation was futile and gathered all my strength to haul you out of the room as the next consultation was starting.
Treacherous move.I never normally deploy physical strength to overpower your will simply because I don’t have it. Your full outrage at being untimely ripped from your activity was unleashed on the waiting room. Your legs hyperextended with rage, your lips quivered, voice was soon hoarse from screaming. The more permutations of persuasiveness I scrabbled for in the attempt to lure you out of there, the more your determination steeled itself to go back into the doctor’s room. After 5 minutes I had no choice but to draw on the reserve tank of strength – the one after which recovery is unpleasant and prolonged – to carry you out of the waiting room, and drag you kicking and screaming into the lift to the ground floor. The whole building could still hear you scream from downstairs but less ear-piercingly. And at least they couldn’t stare any more.
But from there I was stuck. You were not going to budge. There was no way I could carry you any further into the car parked up the road. No way. And you were getting more worked up by the minute. As though the impasse we were in was adding to your distress. “Go back to doctor’s, Go Back to Doctor’s”.. You must have bawled that phrase out 500 times in the next 20 mins. I gave up trying to pacify, cajole or dictate to you you with words. I just sat dishrevelled on the stairs as a few patients trickled out past us and looked on in bemusement,
Why didn’t I just get my child out of there???
I waited zen-like for some denouement to occur. But it didn’t. So I surrendered, which is the only thing your daddy and I can do sometimes, and said we would go back into the lift, back upstairs and see if the doctor would let us back in her room. Immediate and miraculous silence. You held my hand. We re-entered the waiting room. All heads turned and the receptionist’s jaw dropped open as we made our quiet, brazen way past the waiting patients, past the desk, right to outside the doctor’s door. I said, “oh dear, the door is closed, the doctor is busy, we can’t go in there, darling”. Disaster. Your screaming redoubled in an instant and you dived to the floor in protest, in the best Italian footballing tradition. The whole surgery witnessed the scene. Criminally incompetent mother stands by and watches as feral child lets rip in GPs surgery.
Why doesn’t she just get her child out of there??
But I really could not pick you up and carry you. I just could not physically do it, not even for all the embarrassment and desperation I felt. Fortunately your energy was nearly spent too. Down there on the floor, your thumb found its way into your mouth and something about the banana in my bag that I had been promising you registered above your cries to soften the blow of defeat. You accepted my peace offering, you sniffed up your tears and we eventually filed out again, battered and shame-faced with banana in tow.
We had a cuddle when we got home and later on we even shared a laugh as we recounted the events. “I had tantrum at doctor’s” you told your daddy gleefully when he got home.
You are quite the drama queen. They even say at nursery, with a chuckle, that your diminutive size and cherub-like features belie the power of your lungs and the strength of your purpose when crossed. You’ve had your tantrums for a while now, long before the clichéd Terrible Two age. But now they are intensifying in duration, in pitch and in your sheer resolve to have your own will.
Take the other day at the doctor’s. The adventure began so promisingly. It was first time I had taken you there all by myself. You co-operated cheerfully all the way – up the hill, into the carseat, out again, into the surgery, up the lift – all on your own steam and in your own time. I was puffed by the time I sat down in the waiting room but the doctor’s reliable lateness gave me pause for breath. And I was so proud and grateful that you were a clever girl who played nicely with the toys in the waiting area as I watched two stressed out mums trying to stop their boisterous boys from beating each other up.
The doctor said you were very good as she examined your throat, nose and chest and declared your cough was nothing serious. But then she said Goodbye and called in her next patient before you had quite finished playing with the beads on wires in her room. You paid no attention to her cheery “Time to Go, Sofia” and so she left the problem of getting you out of there to your mother. You uttered a piercing shriek at the mildest suggestion that we might now go home so I knew further short-term negotiation was futile and gathered all my strength to haul you out of the room as the next consultation was starting.
Treacherous move.I never normally deploy physical strength to overpower your will simply because I don’t have it. Your full outrage at being untimely ripped from your activity was unleashed on the waiting room. Your legs hyperextended with rage, your lips quivered, voice was soon hoarse from screaming. The more permutations of persuasiveness I scrabbled for in the attempt to lure you out of there, the more your determination steeled itself to go back into the doctor’s room. After 5 minutes I had no choice but to draw on the reserve tank of strength – the one after which recovery is unpleasant and prolonged – to carry you out of the waiting room, and drag you kicking and screaming into the lift to the ground floor. The whole building could still hear you scream from downstairs but less ear-piercingly. And at least they couldn’t stare any more.
But from there I was stuck. You were not going to budge. There was no way I could carry you any further into the car parked up the road. No way. And you were getting more worked up by the minute. As though the impasse we were in was adding to your distress. “Go back to doctor’s, Go Back to Doctor’s”.. You must have bawled that phrase out 500 times in the next 20 mins. I gave up trying to pacify, cajole or dictate to you you with words. I just sat dishrevelled on the stairs as a few patients trickled out past us and looked on in bemusement,
Why didn’t I just get my child out of there???
I waited zen-like for some denouement to occur. But it didn’t. So I surrendered, which is the only thing your daddy and I can do sometimes, and said we would go back into the lift, back upstairs and see if the doctor would let us back in her room. Immediate and miraculous silence. You held my hand. We re-entered the waiting room. All heads turned and the receptionist’s jaw dropped open as we made our quiet, brazen way past the waiting patients, past the desk, right to outside the doctor’s door. I said, “oh dear, the door is closed, the doctor is busy, we can’t go in there, darling”. Disaster. Your screaming redoubled in an instant and you dived to the floor in protest, in the best Italian footballing tradition. The whole surgery witnessed the scene. Criminally incompetent mother stands by and watches as feral child lets rip in GPs surgery.
Why doesn’t she just get her child out of there??
But I really could not pick you up and carry you. I just could not physically do it, not even for all the embarrassment and desperation I felt. Fortunately your energy was nearly spent too. Down there on the floor, your thumb found its way into your mouth and something about the banana in my bag that I had been promising you registered above your cries to soften the blow of defeat. You accepted my peace offering, you sniffed up your tears and we eventually filed out again, battered and shame-faced with banana in tow.
We had a cuddle when we got home and later on we even shared a laugh as we recounted the events. “I had tantrum at doctor’s” you told your daddy gleefully when he got home.
Tuesday, November 20, 2007
Mums n Toddler Groups
Mums and toddler groups have been the best answer to our isolation.
After Sofia was born I threw all my might into keeping up contact with my antenatal class peers. For the first time since I started Uni in a remission in 1991 I had a ready-made group of friends with whom to undergo this life-changing experience of motherhood. And while they were marooned at home on maternity leave we all had fervid email exchanges about strangely –coloured poo, sore nipples and insomniac babies. Occasionally I would make it to a meeting at someone’s house. For a short span of energy I was in heaven. My lovely girl on my knee was my passport to conviviality and chit-chat and a sense of belonging that I craved for during all those years of non-work.
But each week the time and venue of our meetings changed. The mums got restless of breastfeeding with cappuccino and cake. The babies got harder to contain on our laps in homes or cafes. Their get-togethers would turn into power-pramming sessions and increasingly ambitious excursions to far-flung farms and the like in search of the ultimate in mum n baby gratification. The logistics were too much for me. Each week I agonised about whether I could make it or not. I beat my head against the wall as each enthusiastic promise to join in turned into ever-lamer sounding apologies for my sudden relapses, bad days and total unreliability. My and Sofia’s no-show stretched from weeks to months and I ached as our tenuous social world was dissolving.
Then I found out about a nice toddler group nearby and now I’m at peace. Not just any old toddler group, mind you. I had tried some that were overpopular, overcrowded and anonymous, some that were sad and forlorn and some which didn’t even meet my basic requirement of a chair to sit on. This one was just starting up and gaining momentum through word of mouth. (They are the hardest to come across if you’re excluded from the word of mouth.) Unlike the antenatal group meetings, it’s at the same time, the same place, with all the facilities to entertain toddlers and supply you with tea and biscuits and shelter for a pittance. But the real beauty of it is I don’t have to promise to show-up, explain or apologise when I can’t. It’s just there – a loose group of mums that I can dip in and out of when I can.
It’s taken some adjusting to. The only way I can get there with Sofia, stay for an hour or two and get us home again in one piece is with my mum’s help. On a good day she just chauffeurs backwards and forwards and comes at the end to scoop up a strung-out Sofia just as I’m keeling over with exhaustion. Other times I need her to stay and look after Sofia, steering her out of territorial conflicts with other toddlers and helping her up the slides, while I make the most of the chance for a cup of tea and a chat. I feel haunted by that teenager angst of not being able to break free from my mum. She cramps my style, she shows me up, she gets in my hair, as the best of mums do. I wince at the thought of what people think of our unusual duo. I also feel ashamed at asking her to play this chaperoning role in which I try my hardest to assume control and make her into a spare part. But we’ve reached an understanding and it’s worth it. Sometimes when I’m too ill she takes Sofia on her own and I’m happy that Sofia has that continuity and my mum gets to be proper full-on granny from time to time.
I’ve had to learn to pace myself. To know for how long I can try and juggle playing with Sofia and chatting with other mums before the competing demands overwhelm me along with the general noise and chaos of the setting.
I’ve had to learn to accept that for all the joy of sharing day to day experiences of motherhood with other mums there will always be the gaping chasm of ME that separates me from them. I can make small talk about potty training and joke about my toddler’s quirks with the best of them but there will always come a point in the conversation when I have to reveal that yes, Sofia goes to nursery but no I don’t work part time, or no, my mum is not on a temporary visit but is my permanent companion. Because I have ME and I can’t look after Sofia independently. Then they try and place me within a previous job or occupation and learn that no, actually, I’ve never worked because I’ve been ill since I was 18. And however sympathetic and au fait they are with the notion of ME (and most of them are) that last revelation always elicits a strained silence and a brisk change of subject on my part as their brains struggle to absorb all the implications of that statement and still treat me like one of them at the same time.
After Sofia was born I threw all my might into keeping up contact with my antenatal class peers. For the first time since I started Uni in a remission in 1991 I had a ready-made group of friends with whom to undergo this life-changing experience of motherhood. And while they were marooned at home on maternity leave we all had fervid email exchanges about strangely –coloured poo, sore nipples and insomniac babies. Occasionally I would make it to a meeting at someone’s house. For a short span of energy I was in heaven. My lovely girl on my knee was my passport to conviviality and chit-chat and a sense of belonging that I craved for during all those years of non-work.
But each week the time and venue of our meetings changed. The mums got restless of breastfeeding with cappuccino and cake. The babies got harder to contain on our laps in homes or cafes. Their get-togethers would turn into power-pramming sessions and increasingly ambitious excursions to far-flung farms and the like in search of the ultimate in mum n baby gratification. The logistics were too much for me. Each week I agonised about whether I could make it or not. I beat my head against the wall as each enthusiastic promise to join in turned into ever-lamer sounding apologies for my sudden relapses, bad days and total unreliability. My and Sofia’s no-show stretched from weeks to months and I ached as our tenuous social world was dissolving.
Then I found out about a nice toddler group nearby and now I’m at peace. Not just any old toddler group, mind you. I had tried some that were overpopular, overcrowded and anonymous, some that were sad and forlorn and some which didn’t even meet my basic requirement of a chair to sit on. This one was just starting up and gaining momentum through word of mouth. (They are the hardest to come across if you’re excluded from the word of mouth.) Unlike the antenatal group meetings, it’s at the same time, the same place, with all the facilities to entertain toddlers and supply you with tea and biscuits and shelter for a pittance. But the real beauty of it is I don’t have to promise to show-up, explain or apologise when I can’t. It’s just there – a loose group of mums that I can dip in and out of when I can.
It’s taken some adjusting to. The only way I can get there with Sofia, stay for an hour or two and get us home again in one piece is with my mum’s help. On a good day she just chauffeurs backwards and forwards and comes at the end to scoop up a strung-out Sofia just as I’m keeling over with exhaustion. Other times I need her to stay and look after Sofia, steering her out of territorial conflicts with other toddlers and helping her up the slides, while I make the most of the chance for a cup of tea and a chat. I feel haunted by that teenager angst of not being able to break free from my mum. She cramps my style, she shows me up, she gets in my hair, as the best of mums do. I wince at the thought of what people think of our unusual duo. I also feel ashamed at asking her to play this chaperoning role in which I try my hardest to assume control and make her into a spare part. But we’ve reached an understanding and it’s worth it. Sometimes when I’m too ill she takes Sofia on her own and I’m happy that Sofia has that continuity and my mum gets to be proper full-on granny from time to time.
I’ve had to learn to pace myself. To know for how long I can try and juggle playing with Sofia and chatting with other mums before the competing demands overwhelm me along with the general noise and chaos of the setting.
I’ve had to learn to accept that for all the joy of sharing day to day experiences of motherhood with other mums there will always be the gaping chasm of ME that separates me from them. I can make small talk about potty training and joke about my toddler’s quirks with the best of them but there will always come a point in the conversation when I have to reveal that yes, Sofia goes to nursery but no I don’t work part time, or no, my mum is not on a temporary visit but is my permanent companion. Because I have ME and I can’t look after Sofia independently. Then they try and place me within a previous job or occupation and learn that no, actually, I’ve never worked because I’ve been ill since I was 18. And however sympathetic and au fait they are with the notion of ME (and most of them are) that last revelation always elicits a strained silence and a brisk change of subject on my part as their brains struggle to absorb all the implications of that statement and still treat me like one of them at the same time.
Friday, October 19, 2007
Turning the Six Week Corner
I don't really believe in the Six Week myth, after which post-natal fog is supposed to lift and life feel normal again. With Sofia I had a brutal relapse around 7-8 weeks where life was harder than ever.
But Rosa is six weeks old today and I feel like celebrating. I should be barely whispering this but my ME is better than it has been in years. Despite sleep deprivation, and despite being barely healed from the C-Section. We're only talking about the last couple of weeks, mind you. And the improvement in stamina is a matter of 5-10%. Still, having that bit more juice in the tank makes so much difference. I've been out nearly every day. I'm coping with the craziness of trying to juggle a baby and a toddler. I can't believe my luck that we have two lovely girls and we're surviving.
I know relapses and impossible struggles lie ahead but for now I'm on top of the world.
But Rosa is six weeks old today and I feel like celebrating. I should be barely whispering this but my ME is better than it has been in years. Despite sleep deprivation, and despite being barely healed from the C-Section. We're only talking about the last couple of weeks, mind you. And the improvement in stamina is a matter of 5-10%. Still, having that bit more juice in the tank makes so much difference. I've been out nearly every day. I'm coping with the craziness of trying to juggle a baby and a toddler. I can't believe my luck that we have two lovely girls and we're surviving.
I know relapses and impossible struggles lie ahead but for now I'm on top of the world.
Wednesday, October 03, 2007
Thank You
Thank you so much to everyone who wrote messages of congratulations after Rosa’s birth. I loved getting them and am just sorry I couldn’t reply individually to each one. It feels doubly special being congratulated for a second baby. Lots of people don’t bother after your first. There is less good will going around. So each bit of it means more.
Rosa is doing fine. Pooing, feeding, sleeping and crying as she should be, and occasionally discovering the world around her. She has been more difficult at night than Sofia was. While Sofia tended to do her crying in the afternoon and evenings, Rosa does hers in the middle of the night. So her daddy and I have a strict regime of shifts and separate bedrooms in an attempt to each get 5-6 hours sleep per night. I go to bed at 9pm, right after I’ve finished the evening routine that ends with me reading to Sofia and getting her off to sleep. She's the world's loudest grunter. Every time she comes out of a sleep cycle to start the next one, (every 45 mins according to the experts) I get woken up by what sounds like a barn full of pigs.
I’m recovering well from the birth. I can’t wait to be able to get out of the house more though, which is still beyond me. Life is a marathon of feeding and changing Rosa, keeping track of her waking and sleeping, and trying to input occasionally into sofia’s life with a book or a cuddle in front of CBeebies. The danger is the cabin fever. Small flat, low light levels, constant drone of washing machine, static lifestyle of constant feeding and pacifying small baby that I can’t carry around the flat. A trip out to a friend’s house or some postnatal group would be just what the doctor ordered.
I’ve been bereft about Sofia. In a way, the bond I built up over the last two and a half years has ended. Her daddy is her whole world now. He meets all of her needs. Thank God. I’m a mere shadow of her mum. Rosa takes up all my energy. But I have faith that I will rebuild that bond with time. As Rosa takes up less of my time and can integrate into family routines more, and as I gain some energy back. I’ll find new ways of being her mum. She’s doing OK.
Rosa is doing fine. Pooing, feeding, sleeping and crying as she should be, and occasionally discovering the world around her. She has been more difficult at night than Sofia was. While Sofia tended to do her crying in the afternoon and evenings, Rosa does hers in the middle of the night. So her daddy and I have a strict regime of shifts and separate bedrooms in an attempt to each get 5-6 hours sleep per night. I go to bed at 9pm, right after I’ve finished the evening routine that ends with me reading to Sofia and getting her off to sleep. She's the world's loudest grunter. Every time she comes out of a sleep cycle to start the next one, (every 45 mins according to the experts) I get woken up by what sounds like a barn full of pigs.
I’m recovering well from the birth. I can’t wait to be able to get out of the house more though, which is still beyond me. Life is a marathon of feeding and changing Rosa, keeping track of her waking and sleeping, and trying to input occasionally into sofia’s life with a book or a cuddle in front of CBeebies. The danger is the cabin fever. Small flat, low light levels, constant drone of washing machine, static lifestyle of constant feeding and pacifying small baby that I can’t carry around the flat. A trip out to a friend’s house or some postnatal group would be just what the doctor ordered.
I’ve been bereft about Sofia. In a way, the bond I built up over the last two and a half years has ended. Her daddy is her whole world now. He meets all of her needs. Thank God. I’m a mere shadow of her mum. Rosa takes up all my energy. But I have faith that I will rebuild that bond with time. As Rosa takes up less of my time and can integrate into family routines more, and as I gain some energy back. I’ll find new ways of being her mum. She’s doing OK.
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