Hi Wendy it really sounds like you are going through the mill and I feel very sorry for your son. However I do find it quite ironic that

if i am totally honest i wasn't ready for him to have a label saying that he was officially disabled

when throughout your blog you have been labelling him for example

i can explain to him why he has to be treated differently because he is different from other children, and special of course !

,

it's really NOT a good thing when you have a child with Albinism !!

and best of all quote " Maybe I should get a neon sign for his pram saying >>> I HAVE SPECIAL NEEDS DEAL WITH IT !!!!"
Although I appreciate that your blog is there to educate people on this/these conditions (depending on which entry you read) I too have a child with albinism and sometimes find your blog quite offensive. Maybe your next entry could concentrate on the positive aspects of your sons life and not focus on your own difficulties adapting to this condition

Hi Wendy it really sounds like you are going through the mill and I feel very sorry for your son. However I do find it quite ironic that

if i am totally honest i wasn't ready for him to have a label saying that he was officially disabled

when throughout your blog you have been labelling him for example

i can explain to him why he has to be treated differently because he is different from other children, and special of course !

,

it's really NOT a good thing when you have a child with Albinism !!

and best of all quote " Maybe I should get a neon sign for his pram saying >>> I HAVE SPECIAL NEEDS DEAL WITH IT !!!!"
Although I appreciate that your blog is there to educate people on this/these conditions (depending on which entry you read) I too have a child with albinism and sometimes find your blog quite offensive. Maybe your next entry could concentrate on the positive aspects of your sons life and not focus on your own difficulties adapting to this condition

Hi Wendy it really sounds like you are going through the mill and I feel very sorry for your son. However I do find it quite ironic that

if i am totally honest i wasn't ready for him to have a label saying that he was officially disabled

when throughout your blog you have been labelling him for example

i can explain to him why he has to be treated differently because he is different from other children, and special of course !

,

it's really NOT a good thing when you have a child with Albinism !!

and best of all quote " Maybe I should get a neon sign for his pram saying >>> I HAVE SPECIAL NEEDS DEAL WITH IT !!!!"
Although I appreciate that your blog is there to educate people on this/these conditions (depending on which entry you read) I too have a child with albinism and sometimes find your blog quite offensive. Maybe your next entry could concentrate on the positive aspects of your sons life and not focus on your own difficulties adapting to this condition

Hi Wendy it really sounds like you are going through the mill and I feel very sorry for your son. However I do find it quite ironic that

if i am totally honest i wasn't ready for him to have a label saying that he was officially disabled

when throughout your blog you have been labelling him for example

i can explain to him why he has to be treated differently because he is different from other children, and special of course !

,

it's really NOT a good thing when you have a child with Albinism !!

and best of all quote " Maybe I should get a neon sign for his pram saying >>> I HAVE SPECIAL NEEDS DEAL WITH IT !!!!"
Although I appreciate that your blog is there to educate people on this/these conditions (depending on which entry you read) I too have a child with albinism and sometimes find your blog quite offensive. Maybe your next entry could concentrate on the positive aspects of your sons life and not focus on your own difficulties adapting to this condition

mouldyolddough wrote:
Hi Wendy it really sounds like you are going through the mill and I feel very sorry for your son. However I do find it quite ironic that

if i am totally honest i wasn't ready for him to have a label saying that he was officially disabled

when throughout your blog you have been labelling him for example

i can explain to him why he has to be treated differently because he is different from other children, and special of course !

,

it's really NOT a good thing when you have a child with Albinism !!

and best of all quote " Maybe I should get a neon sign for his pram saying >>> I HAVE SPECIAL NEEDS DEAL WITH IT !!!!" Although I appreciate that your blog is there to educate people on this/these conditions (depending on which entry you read) I too have a child with albinism and sometimes find your blog quite offensive. Maybe your next entry could concentrate on the positive aspects of your sons life and not focus on your own difficulties adapting to this condition

Hi

firstly could you point out which parts of my blog have been offensive ? i certainly haven't set out to cause offense and would like to know how i have done so . I have sat and re read every entry but still can't see how.

You are probably right maybe by calling my son special and different i have labelled him .... or maybe i am just being realistic, but having a disability form in front of you and activley saying that someone you love and care about IS disabled is VERY different and very difficult for me to take on board but sadly a part of his journey that was needed.

I would also like to point out that when you quoted my last comment "it's really NOT a good thing when you have a child with Albinism," you failed to put the first half of the sentence and when you read it as it was MEANT to be read which was

"So whilst i would normally love to see the end of the grim weather and start of the beaming sunshine it's really NOT a good thing when you have a child with Albinism"

I was commenting that the weather isn't good when you have a child with albinism NOT that in general it isn't good to have a child with albinism. thats VERY different.

I find it really bizzare that if you find it so offensive you continue to read, but whilst i do try to include the positive aspects of Charlie's life and there are MANY , i do often focus on my own difficulties adapting to his condition but i'm intrigued to know why that bugs you so much ?

Maybe it is simply because i have been open and honest about my feelings and haven't pretended that life is rosey when it feels like far from that , i dunno ?

I will take your comments on board and try to be more positive but I will still discuss my feelings openly because i don't think that admitting to finding it hard watching your child go through some of the things he has, not just the albinism but the other things too makes you a bad person.

Please feel free to contact me with the things i have offended you with.

Wendy

mouldyolddough wrote:
Hi Wendy it really sounds like you are going through the mill and I feel very sorry for your son. However I do find it quite ironic that

if i am totally honest i wasn't ready for him to have a label saying that he was officially disabled

when throughout your blog you have been labelling him for example

i can explain to him why he has to be treated differently because he is different from other children, and special of course !

,

it's really NOT a good thing when you have a child with Albinism !!

and best of all quote " Maybe I should get a neon sign for his pram saying >>> I HAVE SPECIAL NEEDS DEAL WITH IT !!!!" Although I appreciate that your blog is there to educate people on this/these conditions (depending on which entry you read) I too have a child with albinism and sometimes find your blog quite offensive. Maybe your next entry could concentrate on the positive aspects of your sons life and not focus on your own difficulties adapting to this condition

Hi

firstly could you point out which parts of my blog have been offensive ? i certainly haven't set out to cause offense and would like to know how i have done so . I have sat and re read every entry but still can't see how.

You are probably right maybe by calling my son special and different i have labelled him .... or maybe i am just being realistic, but having a disability form in front of you and activley saying that someone you love and care about IS disabled is VERY different and very difficult for me to take on board but sadly a part of his journey that was needed.

I would also like to point out that when you quoted my last comment "it's really NOT a good thing when you have a child with Albinism," you failed to put the first half of the sentence and when you read it as it was MEANT to be read which was

"So whilst i would normally love to see the end of the grim weather and start of the beaming sunshine it's really NOT a good thing when you have a child with Albinism"

I was commenting that the weather isn't good when you have a child with albinism NOT that in general it isn't good to have a child with albinism. thats VERY different.

I find it really bizzare that if you find it so offensive you continue to read, but whilst i do try to include the positive aspects of Charlie's life and there are MANY , i do often focus on my own difficulties adapting to his condition but i'm intrigued to know why that bugs you so much ?

Maybe it is simply because i have been open and honest about my feelings and haven't pretended that life is rosey when it feels like far from that , i dunno ?

I will take your comments on board and try to be more positive but I will still discuss my feelings openly because i don't think that admitting to finding it hard watching your child go through some of the things he has, not just the albinism but the other things too makes you a bad person.

Please feel free to contact me with the things i have offended you with.

Wendy

mouldyolddough wrote:
Hi Wendy it really sounds like you are going through the mill and I feel very sorry for your son. However I do find it quite ironic that

if i am totally honest i wasn't ready for him to have a label saying that he was officially disabled

when throughout your blog you have been labelling him for example

i can explain to him why he has to be treated differently because he is different from other children, and special of course !

,

it's really NOT a good thing when you have a child with Albinism !!

and best of all quote " Maybe I should get a neon sign for his pram saying >>> I HAVE SPECIAL NEEDS DEAL WITH IT !!!!" Although I appreciate that your blog is there to educate people on this/these conditions (depending on which entry you read) I too have a child with albinism and sometimes find your blog quite offensive. Maybe your next entry could concentrate on the positive aspects of your sons life and not focus on your own difficulties adapting to this condition

Hi

firstly could you point out which parts of my blog have been offensive ? i certainly haven't set out to cause offense and would like to know how i have done so . I have sat and re read every entry but still can't see how.

You are probably right maybe by calling my son special and different i have labelled him .... or maybe i am just being realistic, but having a disability form in front of you and activley saying that someone you love and care about IS disabled is VERY different and very difficult for me to take on board but sadly a part of his journey that was needed.

I would also like to point out that when you quoted my last comment "it's really NOT a good thing when you have a child with Albinism," you failed to put the first half of the sentence and when you read it as it was MEANT to be read which was

"So whilst i would normally love to see the end of the grim weather and start of the beaming sunshine it's really NOT a good thing when you have a child with Albinism"

I was commenting that the weather isn't good when you have a child with albinism NOT that in general it isn't good to have a child with albinism. thats VERY different.

I find it really bizzare that if you find it so offensive you continue to read, but whilst i do try to include the positive aspects of Charlie's life and there are MANY , i do often focus on my own difficulties adapting to his condition but i'm intrigued to know why that bugs you so much ?

Maybe it is simply because i have been open and honest about my feelings and haven't pretended that life is rosey when it feels like far from that , i dunno ?

I will take your comments on board and try to be more positive but I will still discuss my feelings openly because i don't think that admitting to finding it hard watching your child go through some of the things he has, not just the albinism but the other things too makes you a bad person.

Please feel free to contact me with the things i have offended you with.

Wendy

mouldyolddough wrote:
Hi Wendy it really sounds like you are going through the mill and I feel very sorry for your son. However I do find it quite ironic that

if i am totally honest i wasn't ready for him to have a label saying that he was officially disabled

when throughout your blog you have been labelling him for example

i can explain to him why he has to be treated differently because he is different from other children, and special of course !

,

it's really NOT a good thing when you have a child with Albinism !!

and best of all quote " Maybe I should get a neon sign for his pram saying >>> I HAVE SPECIAL NEEDS DEAL WITH IT !!!!" Although I appreciate that your blog is there to educate people on this/these conditions (depending on which entry you read) I too have a child with albinism and sometimes find your blog quite offensive. Maybe your next entry could concentrate on the positive aspects of your sons life and not focus on your own difficulties adapting to this condition

Hi

firstly could you point out which parts of my blog have been offensive ? i certainly haven't set out to cause offense and would like to know how i have done so . I have sat and re read every entry but still can't see how.

You are probably right maybe by calling my son special and different i have labelled him .... or maybe i am just being realistic, but having a disability form in front of you and activley saying that someone you love and care about IS disabled is VERY different and very difficult for me to take on board but sadly a part of his journey that was needed.

I would also like to point out that when you quoted my last comment "it's really NOT a good thing when you have a child with Albinism," you failed to put the first half of the sentence and when you read it as it was MEANT to be read which was

"So whilst i would normally love to see the end of the grim weather and start of the beaming sunshine it's really NOT a good thing when you have a child with Albinism"

I was commenting that the weather isn't good when you have a child with albinism NOT that in general it isn't good to have a child with albinism. thats VERY different.

I find it really bizzare that if you find it so offensive you continue to read, but whilst i do try to include the positive aspects of Charlie's life and there are MANY , i do often focus on my own difficulties adapting to his condition but i'm intrigued to know why that bugs you so much ?

Maybe it is simply because i have been open and honest about my feelings and haven't pretended that life is rosey when it feels like far from that , i dunno ?

I will take your comments on board and try to be more positive but I will still discuss my feelings openly because i don't think that admitting to finding it hard watching your child go through some of the things he has, not just the albinism but the other things too makes you a bad person.

Please feel free to contact me with the things i have offended you with.

Wendy

Princess , keep blogging the way you always have. I think it is vital that people appreciate what parents of children with medical conditions however challenging go through and how They have difficulty adapting to a different way of life and how many hoops they have to jump through at times to get help or support.

My own daughter aged 14 was diagnosed in January with a rare condition Arnold Chiari Malformation and Syringomyelia and subsequently Hydrocephalus (it is a condition which can potentially lead to a shorter lifespan or life in a wheelchair if symptoms are not halted - she had surgery hopefully to do this and we are hopeful that this will work but it is not guaranteed) although she looks perfectly "normal" we are ALL as a family having to come to terms with the problems and limitations it is putting on us (we can no longer just do things we have to think - Can we do this?)

And as for labelling children aren't they all special anyway?

Princess , keep blogging the way you always have. I think it is vital that people appreciate what parents of children with medical conditions however challenging go through and how They have difficulty adapting to a different way of life and how many hoops they have to jump through at times to get help or support.

My own daughter aged 14 was diagnosed in January with a rare condition Arnold Chiari Malformation and Syringomyelia and subsequently Hydrocephalus (it is a condition which can potentially lead to a shorter lifespan or life in a wheelchair if symptoms are not halted - she had surgery hopefully to do this and we are hopeful that this will work but it is not guaranteed) although she looks perfectly "normal" we are ALL as a family having to come to terms with the problems and limitations it is putting on us (we can no longer just do things we have to think - Can we do this?)

And as for labelling children aren't they all special anyway?

Princess , keep blogging the way you always have. I think it is vital that people appreciate what parents of children with medical conditions however challenging go through and how They have difficulty adapting to a different way of life and how many hoops they have to jump through at times to get help or support.

My own daughter aged 14 was diagnosed in January with a rare condition Arnold Chiari Malformation and Syringomyelia and subsequently Hydrocephalus (it is a condition which can potentially lead to a shorter lifespan or life in a wheelchair if symptoms are not halted - she had surgery hopefully to do this and we are hopeful that this will work but it is not guaranteed) although she looks perfectly "normal" we are ALL as a family having to come to terms with the problems and limitations it is putting on us (we can no longer just do things we have to think - Can we do this?)

And as for labelling children aren't they all special anyway?

Princess , keep blogging the way you always have. I think it is vital that people appreciate what parents of children with medical conditions however challenging go through and how They have difficulty adapting to a different way of life and how many hoops they have to jump through at times to get help or support.

My own daughter aged 14 was diagnosed in January with a rare condition Arnold Chiari Malformation and Syringomyelia and subsequently Hydrocephalus (it is a condition which can potentially lead to a shorter lifespan or life in a wheelchair if symptoms are not halted - she had surgery hopefully to do this and we are hopeful that this will work but it is not guaranteed) although she looks perfectly "normal" we are ALL as a family having to come to terms with the problems and limitations it is putting on us (we can no longer just do things we have to think - Can we do this?)

And as for labelling children aren't they all special anyway?

AM wrote:
Princess , keep blogging the way you always have. I think it is vital that people appreciate what parents of children with medical conditions however challenging go through and how They have difficulty adapting to a different way of life and how many hoops they have to jump through at times to get help or support. My own daughter aged 14 was diagnosed in January with a rare condition Arnold Chiari Malformation and Syringomyelia and subsequently Hydrocephalus (it is a condition which can potentially lead to a shorter lifespan or life in a wheelchair if symptoms are not halted - she had surgery hopefully to do this and we are hopeful that this will work but it is not guaranteed) although she looks perfectly "normal" we are ALL as a family having to come to terms with the problems and limitations it is putting on us (we can no longer just do things we have to think - Can we do this?) And as for labelling children aren't they all special anyway?

Hi AM,

Firstly thank you so much for the supportive reply.
I'm really sorry to hear about your daughters diagnosis and can empathise with the shock factor to a degree as i had had 2 perfectly healthy children before Charlie with no problems like this and we have no family history of any of Charlies conditions so it was a bit of a bolt out of the blue !

I don't think until you are in the position of having a child with extra care needs ( which is something that always happens to someone else .... until it IS you! ) you realise what a massive journey it is for ALL of the family not just the child and how like you said everyone has to adapt almost to a new way of living.

To be totally honest i was thinking after the original comment that maybe i should change the way i blog but then came to the conclusion that i don't see how sugar coating things and being in denial that sometimes life is **** hard going and you do have really hard obstacles to climb to get where you need and what you need is going to help charlie OR us as a family! Denial isn't as good as some people might think and this journey DOES affect us and yeah i guess the original poster was right i have found difficulties in adapting to his conditions but at least i am being honest to myself and others in doing the blog this way.

Anyway thanks again and good luck with your own journey with your daughter.

Wend x

AM wrote:
Princess , keep blogging the way you always have. I think it is vital that people appreciate what parents of children with medical conditions however challenging go through and how They have difficulty adapting to a different way of life and how many hoops they have to jump through at times to get help or support. My own daughter aged 14 was diagnosed in January with a rare condition Arnold Chiari Malformation and Syringomyelia and subsequently Hydrocephalus (it is a condition which can potentially lead to a shorter lifespan or life in a wheelchair if symptoms are not halted - she had surgery hopefully to do this and we are hopeful that this will work but it is not guaranteed) although she looks perfectly "normal" we are ALL as a family having to come to terms with the problems and limitations it is putting on us (we can no longer just do things we have to think - Can we do this?) And as for labelling children aren't they all special anyway?

Hi AM,

Firstly thank you so much for the supportive reply.
I'm really sorry to hear about your daughters diagnosis and can empathise with the shock factor to a degree as i had had 2 perfectly healthy children before Charlie with no problems like this and we have no family history of any of Charlies conditions so it was a bit of a bolt out of the blue !

I don't think until you are in the position of having a child with extra care needs ( which is something that always happens to someone else .... until it IS you! ) you realise what a massive journey it is for ALL of the family not just the child and how like you said everyone has to adapt almost to a new way of living.

To be totally honest i was thinking after the original comment that maybe i should change the way i blog but then came to the conclusion that i don't see how sugar coating things and being in denial that sometimes life is **** hard going and you do have really hard obstacles to climb to get where you need and what you need is going to help charlie OR us as a family! Denial isn't as good as some people might think and this journey DOES affect us and yeah i guess the original poster was right i have found difficulties in adapting to his conditions but at least i am being honest to myself and others in doing the blog this way.

Anyway thanks again and good luck with your own journey with your daughter.

Wend x

AM wrote:
Princess , keep blogging the way you always have. I think it is vital that people appreciate what parents of children with medical conditions however challenging go through and how They have difficulty adapting to a different way of life and how many hoops they have to jump through at times to get help or support. My own daughter aged 14 was diagnosed in January with a rare condition Arnold Chiari Malformation and Syringomyelia and subsequently Hydrocephalus (it is a condition which can potentially lead to a shorter lifespan or life in a wheelchair if symptoms are not halted - she had surgery hopefully to do this and we are hopeful that this will work but it is not guaranteed) although she looks perfectly "normal" we are ALL as a family having to come to terms with the problems and limitations it is putting on us (we can no longer just do things we have to think - Can we do this?) And as for labelling children aren't they all special anyway?

Hi AM,

Firstly thank you so much for the supportive reply.
I'm really sorry to hear about your daughters diagnosis and can empathise with the shock factor to a degree as i had had 2 perfectly healthy children before Charlie with no problems like this and we have no family history of any of Charlies conditions so it was a bit of a bolt out of the blue !

I don't think until you are in the position of having a child with extra care needs ( which is something that always happens to someone else .... until it IS you! ) you realise what a massive journey it is for ALL of the family not just the child and how like you said everyone has to adapt almost to a new way of living.

To be totally honest i was thinking after the original comment that maybe i should change the way i blog but then came to the conclusion that i don't see how sugar coating things and being in denial that sometimes life is **** hard going and you do have really hard obstacles to climb to get where you need and what you need is going to help charlie OR us as a family! Denial isn't as good as some people might think and this journey DOES affect us and yeah i guess the original poster was right i have found difficulties in adapting to his conditions but at least i am being honest to myself and others in doing the blog this way.

Anyway thanks again and good luck with your own journey with your daughter.

Wend x

AM wrote:
Princess , keep blogging the way you always have. I think it is vital that people appreciate what parents of children with medical conditions however challenging go through and how They have difficulty adapting to a different way of life and how many hoops they have to jump through at times to get help or support. My own daughter aged 14 was diagnosed in January with a rare condition Arnold Chiari Malformation and Syringomyelia and subsequently Hydrocephalus (it is a condition which can potentially lead to a shorter lifespan or life in a wheelchair if symptoms are not halted - she had surgery hopefully to do this and we are hopeful that this will work but it is not guaranteed) although she looks perfectly "normal" we are ALL as a family having to come to terms with the problems and limitations it is putting on us (we can no longer just do things we have to think - Can we do this?) And as for labelling children aren't they all special anyway?

Hi AM,

Firstly thank you so much for the supportive reply.
I'm really sorry to hear about your daughters diagnosis and can empathise with the shock factor to a degree as i had had 2 perfectly healthy children before Charlie with no problems like this and we have no family history of any of Charlies conditions so it was a bit of a bolt out of the blue !

I don't think until you are in the position of having a child with extra care needs ( which is something that always happens to someone else .... until it IS you! ) you realise what a massive journey it is for ALL of the family not just the child and how like you said everyone has to adapt almost to a new way of living.

To be totally honest i was thinking after the original comment that maybe i should change the way i blog but then came to the conclusion that i don't see how sugar coating things and being in denial that sometimes life is **** hard going and you do have really hard obstacles to climb to get where you need and what you need is going to help charlie OR us as a family! Denial isn't as good as some people might think and this journey DOES affect us and yeah i guess the original poster was right i have found difficulties in adapting to his conditions but at least i am being honest to myself and others in doing the blog this way.

Anyway thanks again and good luck with your own journey with your daughter.

Wend x