Showing posts with label stress. Show all posts
Showing posts with label stress. Show all posts
Wednesday, 19 February 2014
Coke Floats & Chemo: Toby's New Home
Coke Floats & Chemo: Toby's New Home: Toby left home an hour ago, and it feels so final, and so sad, but I know in my head I'm doing the absolute right thing for him, I just ...
Toby's New Home
Toby left home an hour ago, and it feels so final, and so sad, but I know in my head I'm doing the absolute right thing for him, I just need time to allow my heart to catch up and see sense too.
Toby is my delightfully funny, mischievous, boisterous, best-hugger-in-the-world 19 year old son, who was born with disabilities so rare that he is a complete one-off, the only person in the world with his particular condition. In the early days, keeping him alive was a round-the-clock struggle, his prognosis was extremely poor and we spent most of his first 6 years in hospital with him seriously ill, and with me sleeping on a camp-bed next to his bed for weeks, and sometimes months on end. His medical care was full-on, he needed 24/7 treatment to keep him from dying, and in those early years we had 38 separate crisis close-calls when he wasn't expected to last more than a few hours. He certainly was never expected to make it all the way to adulthood, and I am so proud of him and so thrilled that he has survived against the odds, but in so doing, it does bring a different set of problems and heartbreaks too.
Toby has the intellectual equivalent capacity of a mainstream 2 year old, and we now know he is severely autistic too. He cannot swallow properly so until relatively recently he was entirely fed via a gastrostomy, and now that he can eat and drink, everything has to be pureed, there are more foods he has to avoid than he can eat, and we live with an extremely high risk of him choking or aspirating food-matter into his lungs. He is also doubly-incontinent, and he has challenging behaviour too, as well as still needing a lot of medical treatment and care. He can walk, which was a joy we never expected, but he is wobbly and unsteady so he also uses a wheelchair, and his speech is limited to one or two word sentences of a very limited vocabulary. None of this gives a real picture of the whirlwind of energy and tenacity and joyousness that is Toby, you really would have to meet him to understand just how very special he is.
So, he always has and always will need total 24-hour supervision, both from a medical and a behavioural point of view. He has absolutely no sense of danger, and this, coupled with a mischievous curiosity and an ability to wreck a room in 12 seconds, means that he can also be exhausting, and nothing else can get done if you're alone with him.
I've always known that, if Toby made it to adulthood, I would want him to be settled somewhere else by the time he was into his middle-twenties, simply because I've seen other adults with learning disabilities have to cope with losing their parents once they are well into their fifties, and then also cope with being springboarded into a completely alien environment with no one able to help them understand what's happening and to help them get used to their new home.
So Toby moving out when he's only a couple of months short of his 20th birthday isn't so far away from the plan I'd always had for him. It was always going to be difficult; Toby and I have been through so much together in his early life that we are closer than close, it's almost that we are a part of one another. What I think is really hard is that my cancer prognosis has taken away the choice of when we do this, and there is a real sense of urgency for a number of reasons.
Firstly, although I am doing really well on treatment and I may well live for several years, the fact is that my cancer is incurable, and I equally well may deteriorate and die relatively quickly. If that happened and Toby was living at home, it would be catastrophic for him, losing his mum, and having to get used to a new place to live in one fell swoop. Finding good places for people like Toby is like finding a needle in a haystack, and with the best will in the world from even the best social workers in the land, in an emergency situation like this, he could be catapulted into a really unsuitable environment without me around to jump up and down and insist on the best.
Secondly, cancer thrives on stress. Stress eats away at the capacity of your immune system to keep the cancer under control, and keeping cancer under control is vital if I am to live for as many years as I possibly can. I hate to say it, but Toby living at home is not good for my stress levels. We live on tenterhooks waiting for his next meltdown, or what havoc he will create. Then there is the constant stress of the next chest infection that may bring him down so low that we may lose him - always checking his breathing, always on edge listening for the tell-tale tone of a slight cough, always worried that he may fall or put something in his mouth that will choke him.... the list goes on and on. Then there is the stress that changing nappies and spoon-feeding a young man also brings, and ensuring he gets all his prescribed medicines on time and that they aren't causing him side-effects, it's all the stress of trying to second-guess how somebody else is feeling when they have no way of telling you themselves.
Thirdly, since I've had cancer, my energy levels and coping resources just aren't as great as they once were. The bottom line is that I'm just not strong enough to look after him anymore, and that really hurts. It feels like he is being jettisoned out of the hot-air balloon so that I can live a bit longer, as if I have had to make a choice between us, and that I've chosen me rather than him. That makes me feel very selfish and very guilty, and it hurts like hell.
The other thing that I'm acutely aware of is that, after all these years caring for Toby, my time will be significantly freed up, and I will be able to do things spontaneously with the rest of the family in a way that Toby's difficult care regime has previously made difficult. This is just piling on the guilt sky-high, that I may actually enjoy a different level of freedom while he has been pushed out. Its all adding up to be the biggest guilt-trip I've ever felt. I really need to find a way to reconcile these dichotomies, and move past these negative feelings as quickly as I can,
I owed it to Toby to find the very best solution I possibly could for him, and that's one area where I really do feel I've done well.
We have lived on our road for over 12 years, and directly across the road is a Residential Care Home for Learning Disabled adults. They are our neighbours. Over the years I've got to know a few of the more able residents, and I've seen how consistently happy and well-cared for they all are. Today they got a new resident - our Toby!
So he has moved across the road, still in the community he has grown up in, and still able to be an integral part of our family. He will be able to pop home several times a week, but in time, once the dust has settled, hopefully he and I can begin a new phase in our relationship, and for the first time ever, I can be his mother, not his carer. Other people will do all the stuff that exhausts me, the stuff that gets in the way of doing things like playing silly games, singing crazy songs, laughing like drains together at nothing in particular, and just having fun. Just like any other young person who is leaving home, his bedroom will still be here for him to stay over on the occasional night too, and certainly for birthdays and Christmases there's no way that our very own King of Celebrations could possibly be anywhere else but at home.
He has spent a lot of time over there during the past few weeks and he has quickly worked his magic on the staff who already seem to adore him. He is incredibly proud of his new bedroom. He can stand on the pavement outside our house and point correctly while saying "Mummy's House" and "Toby's House". However, I don't think it's dawned on him yet that this is permanent.
Please don't think for a moment that organising such a perfect solution has been easy in any way whatsoever. Normally people like Toby can get shipped off to somewhere miles away, even to the other end of the country. I've had to stand and fight Toby's corner against all the odds to make this happen, and it's taken months. Obstacles, hoops, political agendas, funding, policies, protocols, ideology - I've had to battle my way through more than you could ever imagine to make this happen. Only time will tell, if and when Toby is settled and happy, whether the standing my ground was worthwhile or not. I so very much hope that it was.
Next blog - I'll tell you about how we made it happen, and some of the rather shocking lessons I've learned along the way.
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Toby is my delightfully funny, mischievous, boisterous, best-hugger-in-the-world 19 year old son, who was born with disabilities so rare that he is a complete one-off, the only person in the world with his particular condition. In the early days, keeping him alive was a round-the-clock struggle, his prognosis was extremely poor and we spent most of his first 6 years in hospital with him seriously ill, and with me sleeping on a camp-bed next to his bed for weeks, and sometimes months on end. His medical care was full-on, he needed 24/7 treatment to keep him from dying, and in those early years we had 38 separate crisis close-calls when he wasn't expected to last more than a few hours. He certainly was never expected to make it all the way to adulthood, and I am so proud of him and so thrilled that he has survived against the odds, but in so doing, it does bring a different set of problems and heartbreaks too.
Toby has the intellectual equivalent capacity of a mainstream 2 year old, and we now know he is severely autistic too. He cannot swallow properly so until relatively recently he was entirely fed via a gastrostomy, and now that he can eat and drink, everything has to be pureed, there are more foods he has to avoid than he can eat, and we live with an extremely high risk of him choking or aspirating food-matter into his lungs. He is also doubly-incontinent, and he has challenging behaviour too, as well as still needing a lot of medical treatment and care. He can walk, which was a joy we never expected, but he is wobbly and unsteady so he also uses a wheelchair, and his speech is limited to one or two word sentences of a very limited vocabulary. None of this gives a real picture of the whirlwind of energy and tenacity and joyousness that is Toby, you really would have to meet him to understand just how very special he is.
So, he always has and always will need total 24-hour supervision, both from a medical and a behavioural point of view. He has absolutely no sense of danger, and this, coupled with a mischievous curiosity and an ability to wreck a room in 12 seconds, means that he can also be exhausting, and nothing else can get done if you're alone with him.
I've always known that, if Toby made it to adulthood, I would want him to be settled somewhere else by the time he was into his middle-twenties, simply because I've seen other adults with learning disabilities have to cope with losing their parents once they are well into their fifties, and then also cope with being springboarded into a completely alien environment with no one able to help them understand what's happening and to help them get used to their new home.
So Toby moving out when he's only a couple of months short of his 20th birthday isn't so far away from the plan I'd always had for him. It was always going to be difficult; Toby and I have been through so much together in his early life that we are closer than close, it's almost that we are a part of one another. What I think is really hard is that my cancer prognosis has taken away the choice of when we do this, and there is a real sense of urgency for a number of reasons.
Firstly, although I am doing really well on treatment and I may well live for several years, the fact is that my cancer is incurable, and I equally well may deteriorate and die relatively quickly. If that happened and Toby was living at home, it would be catastrophic for him, losing his mum, and having to get used to a new place to live in one fell swoop. Finding good places for people like Toby is like finding a needle in a haystack, and with the best will in the world from even the best social workers in the land, in an emergency situation like this, he could be catapulted into a really unsuitable environment without me around to jump up and down and insist on the best.
Secondly, cancer thrives on stress. Stress eats away at the capacity of your immune system to keep the cancer under control, and keeping cancer under control is vital if I am to live for as many years as I possibly can. I hate to say it, but Toby living at home is not good for my stress levels. We live on tenterhooks waiting for his next meltdown, or what havoc he will create. Then there is the constant stress of the next chest infection that may bring him down so low that we may lose him - always checking his breathing, always on edge listening for the tell-tale tone of a slight cough, always worried that he may fall or put something in his mouth that will choke him.... the list goes on and on. Then there is the stress that changing nappies and spoon-feeding a young man also brings, and ensuring he gets all his prescribed medicines on time and that they aren't causing him side-effects, it's all the stress of trying to second-guess how somebody else is feeling when they have no way of telling you themselves.
Thirdly, since I've had cancer, my energy levels and coping resources just aren't as great as they once were. The bottom line is that I'm just not strong enough to look after him anymore, and that really hurts. It feels like he is being jettisoned out of the hot-air balloon so that I can live a bit longer, as if I have had to make a choice between us, and that I've chosen me rather than him. That makes me feel very selfish and very guilty, and it hurts like hell.
The other thing that I'm acutely aware of is that, after all these years caring for Toby, my time will be significantly freed up, and I will be able to do things spontaneously with the rest of the family in a way that Toby's difficult care regime has previously made difficult. This is just piling on the guilt sky-high, that I may actually enjoy a different level of freedom while he has been pushed out. Its all adding up to be the biggest guilt-trip I've ever felt. I really need to find a way to reconcile these dichotomies, and move past these negative feelings as quickly as I can,
I owed it to Toby to find the very best solution I possibly could for him, and that's one area where I really do feel I've done well.
We have lived on our road for over 12 years, and directly across the road is a Residential Care Home for Learning Disabled adults. They are our neighbours. Over the years I've got to know a few of the more able residents, and I've seen how consistently happy and well-cared for they all are. Today they got a new resident - our Toby!
So he has moved across the road, still in the community he has grown up in, and still able to be an integral part of our family. He will be able to pop home several times a week, but in time, once the dust has settled, hopefully he and I can begin a new phase in our relationship, and for the first time ever, I can be his mother, not his carer. Other people will do all the stuff that exhausts me, the stuff that gets in the way of doing things like playing silly games, singing crazy songs, laughing like drains together at nothing in particular, and just having fun. Just like any other young person who is leaving home, his bedroom will still be here for him to stay over on the occasional night too, and certainly for birthdays and Christmases there's no way that our very own King of Celebrations could possibly be anywhere else but at home.
He has spent a lot of time over there during the past few weeks and he has quickly worked his magic on the staff who already seem to adore him. He is incredibly proud of his new bedroom. He can stand on the pavement outside our house and point correctly while saying "Mummy's House" and "Toby's House". However, I don't think it's dawned on him yet that this is permanent.
Please don't think for a moment that organising such a perfect solution has been easy in any way whatsoever. Normally people like Toby can get shipped off to somewhere miles away, even to the other end of the country. I've had to stand and fight Toby's corner against all the odds to make this happen, and it's taken months. Obstacles, hoops, political agendas, funding, policies, protocols, ideology - I've had to battle my way through more than you could ever imagine to make this happen. Only time will tell, if and when Toby is settled and happy, whether the standing my ground was worthwhile or not. I so very much hope that it was.
Next blog - I'll tell you about how we made it happen, and some of the rather shocking lessons I've learned along the way.
If you’d like to buy a copy of Yvonne Newbold's book, “The Special Parent’s Handbook”, here’s the link to the Amazon Page:
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Thursday, 8 November 2012
Adventures with breast cancer: A funny old week
Adventures with breast cancer: A funny old week: There is so much that's happened this week- good, bad, scary, funny and kind - that I really just don't know where to start. I always try to...
A funny old week
There is so much that's happened this week- good, bad, scary, funny and kind - that I really just don't know where to start. I always try to tell it as it is, but without compromising anyone elses privacy by revealing anything without permission, or which might come back and bite us on the bum. That's why I use a lot of pseudonyms - "WM", "Mr Lovely" and "Mary Poppins" for instance - they know who they are, but the rest of the world doesn't necessarily need to.
I am particularly cautious about protecting the privacy of my kids - they each have far more to cope anyway with their special needs and disabilities, and all three of them make me burst with pride as to how well they cope. They certainly don't need their lives laid bare for worldwide consumption.
We have struggled on for 6 months since diagnosis, making it up as we go along, and I suppose it was all going to fall apart at one stage or another, and this week it did, with very serious issues affecting two of them. Each situation would have been traumatic at the best of times, but two of them developing within 24 hours, during the weekend before my chemotherapy Monday, has stretched my coping mechanisms to the limits. These issues are both going to run and run for months and will take a lot of energy, commitment and gentle handling to ensure the long-term well-being of both of them, and I'm still reeling in shock, and trying to get my head around what needs to be done for the best. Just because life throws a life-threatening illness at you doesn't mean it doesn't also enjoy throwing another whole pile of stress your way too, and I am also acutely aware that, at least in part, both these situations have been exacerbated because of my cancer.
It is widely accepted that battling cancer is often the toughest thing people will have to deal with in life. In my case, parenting three disabled children has been much, much tougher. Over the years, though, they have taught me stacks in terms of resilience, optimism, patience (well perhaps that one still needs working on!), resourcefulness and goodness knows what else, which is also probably helping me deal with the cancer nonsense a bit better too. Being a single parent to 3 kids like mine is an excellent crash-course in disaster-management, and I gave up expecting life to be easy a very long time ago.
When I was a very little girl, I went to a convent school, where the nuns used to wax lyrical about how, if God loved you enough, he might be kind enough to give you a vocation, so you could become a nun for the rest of your life, only wear black, never go out, never look at boys and pray a lot. I was six years old, and this concept made me take up praying as a hobby in total earnest. "Please God, I'd be a rubbish nun, and I want an a really interesting, exciting life". Of course, I wanted him to make me Madonna,with untold fame, fortune and privilege, but she must have got in first because she is exactly a year older than me. At least he gave me the interesting and exciting life I asked for, so I suggest you are always very careful what you wish for!
So having chemo on Monday, a new type of chemo that has a reputation for wiping you out completely, on top of the weekend from hell, was a fairly interesting experience. At least I hadn't had the time or energy to worry about it at all, so I just turned up and did it almost on auto-pilot, having had virtually no sleep whatsoever in the previous 48 hours. Actually it isn't a bad way to approach it at all! This new chemo seems to work on the bones, penetrating them to search out any naughty stray cancer cells that want to party there. That means that my white and red blood cells are in for a kicking too, and right now, virtually every bone and joint is aching and hurting. Not too bad yet, but it kept me awake most of the night, and it is also causing something called peripheral neuropathy, which is tingling fingers and toes, so holding things and doing things is hard and going to get harder in the next few days. Who knows, I might enjoy it! An excuse to do very very little at all! They also put me on steroids for 3 days, which makes me really hungry and only naughty sweet stuff will hit the right note, so once again, the cancer-curing diet will just have to wait. (Oh yes, there are definitely advantages to all of this!). The sore mouth and funny taste is also back with a vengeance, but I've discovered a new way of dealing with it - coke floats! Coca cola with a dollop of ice-cream, and two straws, and lots of loud, rude sucking noises when you reach the bottom. I've become something of an addict over the past couple of days, and I'm just loving it! My pipe-dream? That somehow coke floats turn out to be that elusive cancer-cure that no one else has ever thought of! OK, unlikely, but not only can a girl dream, but I think it's roughly OK to do whatever it takes to get through all this as easily as possible.
I had a bit fun last night when two charity canvassers turned up on my doorstep at exactly the same time as I was juggling dinner. Young, eager, fresh-faced but totally prepared to keep me standing in the doorway on a cold November night for ages while our dinner was burning. Big smiles, and "How are you doing tonight?" was their opening gambit. A gift! I stared blankly, pulled off my wig, and said in the thinest, most frail voice I could muster, "I'm really sorry, I've just had chemo, and I really can't do this right now". The expressions of their faces were a total picture! I've never seen anyone retreat backwards down my path falling over themselves with apologies so flipping fast in my life. Achy bones or not, I found the whole thing so funny I had to invent a new "achy bone dance" and performed it for my kid's amusement in the kitchen!
Two real acts of kindness have made this week much much more tolerable. Firstly, I'm off for a heart scan this morning. The next phase of treatment which I'm due to start in a couple of weeks is a new wonder drug called Herceptin. Not all breast cancers respond to it, but I'm very lucky that mine should. Over the past 10 years it has increased survival rates for my type of cancer by well over 30%, so I really want some of it. It means going to have a drip in every 3 weeks for a year, but if that means I survive it's a very small price to pay. However, it can cause severe heart damage, and they need to check my heart is strong enough to cope. The chemo I've already has can also damage the heart, so they really do have to check, and I'll need heart scans every three months for the next year. The normal heart scan involves two cannulas, and they can't use my portacath, so with my needle-phobia I freaked out and really didn't deal with the idea at all well. So my oncologist has arranged for me to go to another hospital where they can do a different test, an Echocardiogram, which doesn't involve any needles. It has just so lightened my load this week. I'm not quite looking forward to lying on the table with my disfigurement naked for them to see, and I'm still really trying to get my head around the whole shark bite scar issue, but it will be OK.
The other lovely thing that happened was a new friend, who lives in Canada and who I have got to know through writing this blog sent me the most amazing greetings card this week. She has taken the time and the trouble to download all the hat photos from the Photo Shoot blog post, and has incorporated them into the most amazing card! Thank you Sharon. Between this post and the next, I'll try and take some photos of it to include, so you can just how lovely it is.
If I'm well enough, off to Drama again tonight, the perfect escape when real life just gets that little bit too much like real life.
I am particularly cautious about protecting the privacy of my kids - they each have far more to cope anyway with their special needs and disabilities, and all three of them make me burst with pride as to how well they cope. They certainly don't need their lives laid bare for worldwide consumption.
We have struggled on for 6 months since diagnosis, making it up as we go along, and I suppose it was all going to fall apart at one stage or another, and this week it did, with very serious issues affecting two of them. Each situation would have been traumatic at the best of times, but two of them developing within 24 hours, during the weekend before my chemotherapy Monday, has stretched my coping mechanisms to the limits. These issues are both going to run and run for months and will take a lot of energy, commitment and gentle handling to ensure the long-term well-being of both of them, and I'm still reeling in shock, and trying to get my head around what needs to be done for the best. Just because life throws a life-threatening illness at you doesn't mean it doesn't also enjoy throwing another whole pile of stress your way too, and I am also acutely aware that, at least in part, both these situations have been exacerbated because of my cancer.
It is widely accepted that battling cancer is often the toughest thing people will have to deal with in life. In my case, parenting three disabled children has been much, much tougher. Over the years, though, they have taught me stacks in terms of resilience, optimism, patience (well perhaps that one still needs working on!), resourcefulness and goodness knows what else, which is also probably helping me deal with the cancer nonsense a bit better too. Being a single parent to 3 kids like mine is an excellent crash-course in disaster-management, and I gave up expecting life to be easy a very long time ago.
When I was a very little girl, I went to a convent school, where the nuns used to wax lyrical about how, if God loved you enough, he might be kind enough to give you a vocation, so you could become a nun for the rest of your life, only wear black, never go out, never look at boys and pray a lot. I was six years old, and this concept made me take up praying as a hobby in total earnest. "Please God, I'd be a rubbish nun, and I want an a really interesting, exciting life". Of course, I wanted him to make me Madonna,with untold fame, fortune and privilege, but she must have got in first because she is exactly a year older than me. At least he gave me the interesting and exciting life I asked for, so I suggest you are always very careful what you wish for!
So having chemo on Monday, a new type of chemo that has a reputation for wiping you out completely, on top of the weekend from hell, was a fairly interesting experience. At least I hadn't had the time or energy to worry about it at all, so I just turned up and did it almost on auto-pilot, having had virtually no sleep whatsoever in the previous 48 hours. Actually it isn't a bad way to approach it at all! This new chemo seems to work on the bones, penetrating them to search out any naughty stray cancer cells that want to party there. That means that my white and red blood cells are in for a kicking too, and right now, virtually every bone and joint is aching and hurting. Not too bad yet, but it kept me awake most of the night, and it is also causing something called peripheral neuropathy, which is tingling fingers and toes, so holding things and doing things is hard and going to get harder in the next few days. Who knows, I might enjoy it! An excuse to do very very little at all! They also put me on steroids for 3 days, which makes me really hungry and only naughty sweet stuff will hit the right note, so once again, the cancer-curing diet will just have to wait. (Oh yes, there are definitely advantages to all of this!). The sore mouth and funny taste is also back with a vengeance, but I've discovered a new way of dealing with it - coke floats! Coca cola with a dollop of ice-cream, and two straws, and lots of loud, rude sucking noises when you reach the bottom. I've become something of an addict over the past couple of days, and I'm just loving it! My pipe-dream? That somehow coke floats turn out to be that elusive cancer-cure that no one else has ever thought of! OK, unlikely, but not only can a girl dream, but I think it's roughly OK to do whatever it takes to get through all this as easily as possible.
I had a bit fun last night when two charity canvassers turned up on my doorstep at exactly the same time as I was juggling dinner. Young, eager, fresh-faced but totally prepared to keep me standing in the doorway on a cold November night for ages while our dinner was burning. Big smiles, and "How are you doing tonight?" was their opening gambit. A gift! I stared blankly, pulled off my wig, and said in the thinest, most frail voice I could muster, "I'm really sorry, I've just had chemo, and I really can't do this right now". The expressions of their faces were a total picture! I've never seen anyone retreat backwards down my path falling over themselves with apologies so flipping fast in my life. Achy bones or not, I found the whole thing so funny I had to invent a new "achy bone dance" and performed it for my kid's amusement in the kitchen!
Two real acts of kindness have made this week much much more tolerable. Firstly, I'm off for a heart scan this morning. The next phase of treatment which I'm due to start in a couple of weeks is a new wonder drug called Herceptin. Not all breast cancers respond to it, but I'm very lucky that mine should. Over the past 10 years it has increased survival rates for my type of cancer by well over 30%, so I really want some of it. It means going to have a drip in every 3 weeks for a year, but if that means I survive it's a very small price to pay. However, it can cause severe heart damage, and they need to check my heart is strong enough to cope. The chemo I've already has can also damage the heart, so they really do have to check, and I'll need heart scans every three months for the next year. The normal heart scan involves two cannulas, and they can't use my portacath, so with my needle-phobia I freaked out and really didn't deal with the idea at all well. So my oncologist has arranged for me to go to another hospital where they can do a different test, an Echocardiogram, which doesn't involve any needles. It has just so lightened my load this week. I'm not quite looking forward to lying on the table with my disfigurement naked for them to see, and I'm still really trying to get my head around the whole shark bite scar issue, but it will be OK.
The other lovely thing that happened was a new friend, who lives in Canada and who I have got to know through writing this blog sent me the most amazing greetings card this week. She has taken the time and the trouble to download all the hat photos from the Photo Shoot blog post, and has incorporated them into the most amazing card! Thank you Sharon. Between this post and the next, I'll try and take some photos of it to include, so you can just how lovely it is.
If I'm well enough, off to Drama again tonight, the perfect escape when real life just gets that little bit too much like real life.
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