We had a good time out at a friend's house yesterday afternoon, the kids ran around the living room and Charlotte sat or lay around chewing on various toys that were offered to her. She didn't wear her sunglasses and the lights were on and she seemed fine. Maybe she can see more with it darker but it certainly didn't get in the way of the baby-playing that she was doing.
The older kids went out Easter egg hunting in the rain - so British!
Wednesday 31 March 2010
Tuesday 30 March 2010
To tell or not to tell?
I’m struggling these days with working out whether, and how, to tell people about Charlotte’s vision. I don’t mean close family and friends, they know and they have been holding our hands through the whole journey. It’s more the people, say, on Facebook or acquaintences that I know in the playground. Martin’s benchmark for telling is if the person is close enough that I would phone them, tell, if not, I shouldn't.
I go through phases of telling and not telling. Sometimes, I feel like telling everyone (so all the Mum’s at Emily’s school know because I saw them all that week), sometimes I keep it very private. I don’t want to be: “this is our baby, Charlotte, she’s blind.” That’s not fair to her, at the same time, it is important information about her and it helps me to share in order to get the support that I need.
But by sharing, I don’t want to become "the mother of the disabled child" where others feel that they can’t talk about their stuff because they think, “Hey – she has it worse than me.” I want to share details about our kids lives and our stresses and struggles with them.
Another example of my dilemma: some friends of mine live on other continents and we keep up only on facebook or email, and only intermittently, at that. Do I write them a special note? Do I post a status update (no way!)? Do I reconnect on a more general level so that I can bring it up in the future?
One particular friend (ex-friend?) lives a long way away and I told her on email when we first heard. I got complete radio silence. Then she sent me a birthday card. I wondered if she didn’t get the email so I sent her a message via Skype to thank her for the card (I didn’t mention Charlotte), she didn’t acknowledge that message either so now should I message her via Facebook? I feel like a bit of a stalker! It’s so hard to know what to do. At the moment, I'm not doing anything but that isn't exactly good for our friendship or how I feel about her.
This weekend, I posted on a website forum that I used to frequent when I was first pregnant and grappling with a new baby. I got a lot of wonderful support from doing so. Number one was from a woman on the site, with her own child, who is struggling with a degenerative retinal disease. She shared her blog with me and I was so uplifted by what a positive, go-getter person she is. We have corresponded a bit since and I am looking forward to hearing more from her.
I go through phases of telling and not telling. Sometimes, I feel like telling everyone (so all the Mum’s at Emily’s school know because I saw them all that week), sometimes I keep it very private. I don’t want to be: “this is our baby, Charlotte, she’s blind.” That’s not fair to her, at the same time, it is important information about her and it helps me to share in order to get the support that I need.
But by sharing, I don’t want to become "the mother of the disabled child" where others feel that they can’t talk about their stuff because they think, “Hey – she has it worse than me.” I want to share details about our kids lives and our stresses and struggles with them.
Another example of my dilemma: some friends of mine live on other continents and we keep up only on facebook or email, and only intermittently, at that. Do I write them a special note? Do I post a status update (no way!)? Do I reconnect on a more general level so that I can bring it up in the future?
One particular friend (ex-friend?) lives a long way away and I told her on email when we first heard. I got complete radio silence. Then she sent me a birthday card. I wondered if she didn’t get the email so I sent her a message via Skype to thank her for the card (I didn’t mention Charlotte), she didn’t acknowledge that message either so now should I message her via Facebook? I feel like a bit of a stalker! It’s so hard to know what to do. At the moment, I'm not doing anything but that isn't exactly good for our friendship or how I feel about her.
This weekend, I posted on a website forum that I used to frequent when I was first pregnant and grappling with a new baby. I got a lot of wonderful support from doing so. Number one was from a woman on the site, with her own child, who is struggling with a degenerative retinal disease. She shared her blog with me and I was so uplifted by what a positive, go-getter person she is. We have corresponded a bit since and I am looking forward to hearing more from her.
Sunday 28 March 2010
Treatments and cures: not so black and white
Usually, one of the first things that anyone says to me, when I tell them about Charlotte, is to mention, or question, treatment, laser surgery, glasses, cure, research, medical miracles or some variation thereof. I did it too, treatment was the first thing I asked the Pedeatrician about; and I was shocked to hear that there is none.
Even though I did it myself, I find it irritating when this is the thing that people gravitate towards. I realise that this is my issue and they are just trying to be kind and take the pain away from me. What I really want is sympathy, not solutions. I am trying to find a stock answer that will work to make them understand our situation, while acknowledging their kind intentions. So far, all I have come up with is, "I wish there was something we could do."
I have also had suggestions that acupuncture, cranio-sacral osteopathy and eating carrots can make blind people see.
I do believe that genetic research will one day offer a cure for conditions such as Charlotte's. But I fear that it will come too late for her to benefit. This is because of my limited knowledge of how a baby and child's visual cortex develops in early life. If the development is altered, as hers will be, or non-existent, as in the completely blind, how will restoring the functioning of the eyes create normal sight? Sight requires the eyes and the brain working together. The brain is not born with the required neural connections in place, this develops through infancy and childhood.
I'm not saying that there is no point persuing various cures or that they are of no benefit. If anyone can avoid living through this, I am all for it. I am particularly hopeful that if this genetic condition is likely to be passed on to Charlotte or Emily's children, that they will benefit from treatment. Also, people who have lost their sight after having it, would jump at the chance to see again. They have had the required development in the visual cortex to benefit from regaining their sight.
If Charlotte were offered her sight as an adult, should she take the opportunity? Would it even be sight as we know it? That is a decision that she would have to make and, if we have done our job properly, she will be a confident, intelligent woman who is capable of making her own, complex, decisions. If she is a fully functioning, active member of society with a job, a social life, hobbies and interests, I really think she would be right to hesitate to queue up for a cure.
My mother would be horrified at my expression of these sentiments. It seems so black and white. To see or not: of course, everyone would choose to be able to see as well as possible. If there were a cure available today, or next year, of course we would do it. But in her distant future, who knows? It's a pretty grey area.
Even though I did it myself, I find it irritating when this is the thing that people gravitate towards. I realise that this is my issue and they are just trying to be kind and take the pain away from me. What I really want is sympathy, not solutions. I am trying to find a stock answer that will work to make them understand our situation, while acknowledging their kind intentions. So far, all I have come up with is, "I wish there was something we could do."
I have also had suggestions that acupuncture, cranio-sacral osteopathy and eating carrots can make blind people see.
I do believe that genetic research will one day offer a cure for conditions such as Charlotte's. But I fear that it will come too late for her to benefit. This is because of my limited knowledge of how a baby and child's visual cortex develops in early life. If the development is altered, as hers will be, or non-existent, as in the completely blind, how will restoring the functioning of the eyes create normal sight? Sight requires the eyes and the brain working together. The brain is not born with the required neural connections in place, this develops through infancy and childhood.
I'm not saying that there is no point persuing various cures or that they are of no benefit. If anyone can avoid living through this, I am all for it. I am particularly hopeful that if this genetic condition is likely to be passed on to Charlotte or Emily's children, that they will benefit from treatment. Also, people who have lost their sight after having it, would jump at the chance to see again. They have had the required development in the visual cortex to benefit from regaining their sight.
If Charlotte were offered her sight as an adult, should she take the opportunity? Would it even be sight as we know it? That is a decision that she would have to make and, if we have done our job properly, she will be a confident, intelligent woman who is capable of making her own, complex, decisions. If she is a fully functioning, active member of society with a job, a social life, hobbies and interests, I really think she would be right to hesitate to queue up for a cure.
My mother would be horrified at my expression of these sentiments. It seems so black and white. To see or not: of course, everyone would choose to be able to see as well as possible. If there were a cure available today, or next year, of course we would do it. But in her distant future, who knows? It's a pretty grey area.
Saturday 27 March 2010
Archive: 17 March 2010
I have been in a bit of a bad way emotionally over the last week. I seem to go through a bit of a rough spot in the days after an appointment, particularly at Great Ormond Street.
We are still in such an unknown space, they don’t really know what she has. My main concern now is whether she has a progressive condition or not. I was in such a bad way this weekend that I was convinced that she did, that she would end up completely blind, that Emily would have it too and that I would end up with two blind children where my only consolation would be that they would have both seen my face once upon a time. Good thoughts, heh?
I felt that we have been so unlucky with all of this that why should our luck not continue to decline? We have had no end to the cycle of bad news and it is really wearing me down. Each time I read (on the internet), something more, I get cold chills (eg nystagmus causes vision loss), then I realise it doesn’t apply to us, then it comes true. We accept the new reality, I read more, more cold chills (eg. Inactive cones mean legally blind), denial, reality. Sucks, sucks, sucks. Oh, and while I am catastrophising: she probably has one of the brain-wasting conditions, that first presents in the eye, where the child ends up blind, bedridden and demented, before dying. I’ve taken a break from the internet now. There are only certain times when I feel strong enough to seek out new information.
I need to re-connect with Charlotte herself. I don’t have a disabled child/baby, I have a Charlotte. And I love having a Charlotte, she is wonderful: she chuckles when you jiggle her really fast, or kiss her feet (but only when she is naked!).
I’m starting to chase up some of our outstanding appointments and phone around for some new ones. I am really looking forward to a home visit from a low vision teacher tomorrow. He is going to show me some productive ways to play with her and I am also going to ask him about schooling options in our borough which have implications for where we send Emily in the next two years.
I also find Charlotte’s condition very confusing: she is not extremely photophobic. I don’t know if that is because she is an easy-going, good-natured soul, or if it really doesn’t bother her that much. And she can see some objects in bright light. Maybe she can see them but it just causes her greater effort. I feel quite strongly that I want her to learn to read and write in Braille as well as letters. I read that rods are better at seeing things that move and cones are for stationary objects. That implies to me that her mobility will not be as affected as her literacy. She may be able to get about without any greater mobility aids than sunglasses but if reading and writing cause her frustration and headaches, she is never going to develop a love of the written word. I feel that Braille opens up new avenues for literacy for children. But I guess I am sort of getting ahead of myself here. One day at a time, one thing at a time. It’s really hard.
We are still in such an unknown space, they don’t really know what she has. My main concern now is whether she has a progressive condition or not. I was in such a bad way this weekend that I was convinced that she did, that she would end up completely blind, that Emily would have it too and that I would end up with two blind children where my only consolation would be that they would have both seen my face once upon a time. Good thoughts, heh?
I felt that we have been so unlucky with all of this that why should our luck not continue to decline? We have had no end to the cycle of bad news and it is really wearing me down. Each time I read (on the internet), something more, I get cold chills (eg nystagmus causes vision loss), then I realise it doesn’t apply to us, then it comes true. We accept the new reality, I read more, more cold chills (eg. Inactive cones mean legally blind), denial, reality. Sucks, sucks, sucks. Oh, and while I am catastrophising: she probably has one of the brain-wasting conditions, that first presents in the eye, where the child ends up blind, bedridden and demented, before dying. I’ve taken a break from the internet now. There are only certain times when I feel strong enough to seek out new information.
I need to re-connect with Charlotte herself. I don’t have a disabled child/baby, I have a Charlotte. And I love having a Charlotte, she is wonderful: she chuckles when you jiggle her really fast, or kiss her feet (but only when she is naked!).
I’m starting to chase up some of our outstanding appointments and phone around for some new ones. I am really looking forward to a home visit from a low vision teacher tomorrow. He is going to show me some productive ways to play with her and I am also going to ask him about schooling options in our borough which have implications for where we send Emily in the next two years.
I also find Charlotte’s condition very confusing: she is not extremely photophobic. I don’t know if that is because she is an easy-going, good-natured soul, or if it really doesn’t bother her that much. And she can see some objects in bright light. Maybe she can see them but it just causes her greater effort. I feel quite strongly that I want her to learn to read and write in Braille as well as letters. I read that rods are better at seeing things that move and cones are for stationary objects. That implies to me that her mobility will not be as affected as her literacy. She may be able to get about without any greater mobility aids than sunglasses but if reading and writing cause her frustration and headaches, she is never going to develop a love of the written word. I feel that Braille opens up new avenues for literacy for children. But I guess I am sort of getting ahead of myself here. One day at a time, one thing at a time. It’s really hard.
Archive: 8th March 2010
Sunny spring day – oh no!
Who says that? Me. And Charlotte. The more gorgeous the weather, the harder things seem to be for her. I became a great lover of the winter solstice the moment I heard that Charlotte’s vision would probably be better in the twilight. We are trying sunglasses on her today but she really doesn’t enjoy wearing them. Who can blame her? She doesn’t want a piece of hard plastic pressing on her little face and head. And yet, she does seem calmer with them on. Our kitchen is a gloriously sunny room in the mornings with two huge south facing windows. We have no shades or blinds on them. I would have to get some but we are going to sell the house instead. Who wants a north-facing, basement kitchen? Me, me, me! I’m viewing a house today that has a double height living space which I am pretty sure is two stories of south-facing glass. Sounds divine. Not the right place for us.
I fear that more and more of our decisions are going to be made on the basis of what is right for Charlotte. Where does the balance come? I firmly believe that one child, nor any child, should rule the family roost. My opinion is that children need to fit in with family life, particularly second and subsequent children. Parents make the decisions and children go along. Obviously, I don’t mean this as authoritarian as I sound but “benevolent dictatorship” is probably pretty close to my model of parenting. But I digress. It seems to me that more and more family decisions are being overtaken by what Charlotte needs: schooling, housing, childcare, holidays, even the country where we live. (Of our three possible choices of cities: London, Sydney and Vancouver, only London offers both gloomy weather and good public transport).
The reason why I am reluctant to make changes to our family life for Charlotte is because I have read and heard so much about not treating special needs, especially blind, children, any different from their peers and siblings. I want to give her the tools to get on with life and then expect her to get on with it. I’m struggling to reconcile the tools and the getting-on-with right now.
I expect I am struggling with many things right now. We’ll get to that.
Who says that? Me. And Charlotte. The more gorgeous the weather, the harder things seem to be for her. I became a great lover of the winter solstice the moment I heard that Charlotte’s vision would probably be better in the twilight. We are trying sunglasses on her today but she really doesn’t enjoy wearing them. Who can blame her? She doesn’t want a piece of hard plastic pressing on her little face and head. And yet, she does seem calmer with them on. Our kitchen is a gloriously sunny room in the mornings with two huge south facing windows. We have no shades or blinds on them. I would have to get some but we are going to sell the house instead. Who wants a north-facing, basement kitchen? Me, me, me! I’m viewing a house today that has a double height living space which I am pretty sure is two stories of south-facing glass. Sounds divine. Not the right place for us.
I fear that more and more of our decisions are going to be made on the basis of what is right for Charlotte. Where does the balance come? I firmly believe that one child, nor any child, should rule the family roost. My opinion is that children need to fit in with family life, particularly second and subsequent children. Parents make the decisions and children go along. Obviously, I don’t mean this as authoritarian as I sound but “benevolent dictatorship” is probably pretty close to my model of parenting. But I digress. It seems to me that more and more family decisions are being overtaken by what Charlotte needs: schooling, housing, childcare, holidays, even the country where we live. (Of our three possible choices of cities: London, Sydney and Vancouver, only London offers both gloomy weather and good public transport).
The reason why I am reluctant to make changes to our family life for Charlotte is because I have read and heard so much about not treating special needs, especially blind, children, any different from their peers and siblings. I want to give her the tools to get on with life and then expect her to get on with it. I’m struggling to reconcile the tools and the getting-on-with right now.
I expect I am struggling with many things right now. We’ll get to that.
Intro
It's time for me to start keeping a blog. I used to keep a journal when I was a teenager and this is the electronic progression right? Just a bit more public. I don't expect any readers at the moment, particularly as I am not planning on passing around the address. I've written a bunch of pseudo-blog posts over the last month so I am planning on publishing them as we go along. I guess it will make it all a bit jumbled but, hey, it's my blog - I can do what I want!
I'm in a sharing mood today and I feel the need to write about Charlotte and her nystagmus. Some days, I feel very quiet, others, I feel the need to share. If you know me in real life, you will know that I do like to talk about this stuff a lot so hopefully a blog will get some of it off my chest and relieve the burden on my friends and loved ones.
Charlotte, our second child, has Congenital Nystagmus, an involuntary movement of the eyes. This causes low vision. There are a bunch of websites explaining this a lot better than I can so go and Google it. (I might feel helpful and post some links later). In many cases, Nystagmus is Idiopathic (no known cause) but it is also caused by a range of underlying conditions. Charlotte's has been narrowed down to no cone function.
This is apparently pretty rare. Cone Dystrophy is the closest information I have been able to find. We are still undiagnosed as to her exact cone dysfunction and are awaiting a referral for gentic testing to, hopefully, narrow down the subtype and prognosis for her exact condition. We have been referred to "Professor Cone", as I like to think of him, the world expert on cones, and hopefully he will take us into his care. (Please, please: NHS, don't lose your funding, despite the financial woes of the British economy!)
I'll continue to post as my state of mind fluctuates and as we move through the world of specialists and services.
I'm in a sharing mood today and I feel the need to write about Charlotte and her nystagmus. Some days, I feel very quiet, others, I feel the need to share. If you know me in real life, you will know that I do like to talk about this stuff a lot so hopefully a blog will get some of it off my chest and relieve the burden on my friends and loved ones.
Charlotte, our second child, has Congenital Nystagmus, an involuntary movement of the eyes. This causes low vision. There are a bunch of websites explaining this a lot better than I can so go and Google it. (I might feel helpful and post some links later). In many cases, Nystagmus is Idiopathic (no known cause) but it is also caused by a range of underlying conditions. Charlotte's has been narrowed down to no cone function.
This is apparently pretty rare. Cone Dystrophy is the closest information I have been able to find. We are still undiagnosed as to her exact cone dysfunction and are awaiting a referral for gentic testing to, hopefully, narrow down the subtype and prognosis for her exact condition. We have been referred to "Professor Cone", as I like to think of him, the world expert on cones, and hopefully he will take us into his care. (Please, please: NHS, don't lose your funding, despite the financial woes of the British economy!)
I'll continue to post as my state of mind fluctuates and as we move through the world of specialists and services.
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