RAISING A SEVERELY DISABLED CHILD
A PERSONAL AND VERY HONEST FATHER’S PERSPECTIVE AND JOURNEY SO FAR.....
WHAT IT’S REALLY LIKE!!.
A Personal Journey of Fitness, Discipline, and Mental WellbeingThe Challenge: Running 23km a week for a year and going Sober (no alcohol) for a whole year.
September 2026 Update: 45 weeks of Double Challenge completed - I've managed to run 1078 k/m in 45 weeks (53km ahead of schedule at the moment) = 114 runs (9.54km ave per run) - 112hrs running and (Thinking time!). I am also one year alcohol free (last drink 28th Sept 25). Doesn’t sound like a big deal to many, but for me it’s a substantial achievement of which I am very proud of. I feel physically and mentally stronger and fitter than previously (and have lost 4 stone!) and am in the normal BMI range now for my height. As a result of my double challenge I'm having more good days than bad, I still have bad days where I just can't fight off the black dog, but I've grown to except that these particular days I'm just not going to win whatever I do (and that's ok). My plan is to remain teetotal for the rest of my life and I hope that people will be supportive of this change of lifestyle. Massive thanks to those who have supported me so far on my challenge and have given very generously to Lewis appeal and sent me very kind and thoughtful messages. Running 23km a week for a year  |
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A Personal Journey of Fitness, Discipline, and Mental Wellbeing The Challenge: Running 23km a week for a year and going Sober (no alcohol) for a whole year.
September 2026 Update: 45 weeks of Double Challenge completed - I've managed to run 1078 k/m in 45 weeks (53km ahead of schedule at the moment) = 114 runs (9.54km ave per run) - 112hrs running and (Thinking time!). I am also one year alcohol free (last drink 28th Sept 25). Doesn’t sound like a big deal to many, but for me it’s a substantial achievement of which I am very proud of. I feel physically and mentally stronger and fitter than previously (and have lost 4 stone!) and am in the normal BMI range now for my height. As a result of my double challenge I'm having more good days than bad, I still have bad days where I just can't fight off the black dog, but I've grown to except that these particular days I'm just not going to win whatever I do (and that's ok). My plan is to remain teetotal for the rest of my life and I hope that people will be supportive of this change of lifestyle. Massive thanks to those who have supported me so far on my challenge and have given very generously to Lewis appeal and sent me very kind and thoughtful messages. Running 23km a week for a year |
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Introduction to The Journey of a Special Needs Father
Hello, thank you for visiting my website. My name is Gary Herbert and the father of the amazing, very brave, inspiring, but severely disabled Lewis. This website is a totally honest account and personal perspective of my journey in raising Lewis from 0-18 years old and the numerous and ongoing challenges which I have faced.I love Lewis dearly and always will. I would do absolutely anything for him, but every single day I wish I could take away his pain and suffering. Lewis is my hero and we all adore him and love him unconditionally. Although he has no quality of life and just exists, he is our world and we would be totally lost without him.
It has taken me a long time to be brave enough to share my story as it’s brutally honest and very real. I am nervous, apprehensive and very worried about how it is going to be perceived, but I always promised myself that if I was going to do it, then I would be totally honest and tell it like it really is, warts and all!. So here goes...........
Every Father's journey will be different as every child and personal situation is completely different. In my case there has been very few positives as Lewis is so severely disabled, but this won't be the case for everyone. I just want to make other Fathers aware what it might be like, and what challenges they may experience during their journey. I never had another Father make me aware of what the future might entail when Lewis was disagosed, and I have had to find it all out myself as I have gone along. I would have really benefited from another Father speaking to me and giving me their experiences of what challenges there may be ahead.
I just want to make it crystal clear to any Father who is reading this that this is totally my experience of what it's been like for me, it doesn't mean that it will be the same for you, and please don't read this website and think there is no hope, there is always hope. If any part of this website can prepare another father for the challenges they may face in the future then it would have served it's purpose.
As a rule Men don’t normally or freely speak about their feelings and emotions (They feel it's a weakness, where it is quite the opposite!). It’s just the way it has always been (it is slowly getting better though with more awareness surrounding mental health). Men are often told to “man up” or just decide to put on a “stiff upper lip” and pretend that everything is alright for the fear of what their family, friends and others may think of them. This for me is a stone age way of thinking and it has to change. Men have feelings and emotions as well and they can really suffer badly with their mental health for long periods of time, and in lots of cases forever. They say “It’s ok not be ok” and this is very true, there is only so much a human being can endure until they break!.
I feel I have gained a great deal of knowledge about the extreme and ongoing challenges it takes to bring up a severely disabled child, and about all the countless obstacles which parents face. No one can prepare you for the journey you are going to take or continue to take, but if I can help or support just one father who has gone through or is going through what I have then it will be worthwhile spilling my guts!.
I’m going to be brutally honest and list absolutely everything I have been through and continue to go through as a father of a disabled child. There is no point in pretending it is easy, it isn't!. It's the hardest thing a father will have to go through in their life. Those who say it gets easier with time are completely wrong, it doesn’t!, it gets harder and more challenging and upsetting as the years roll by.
If one other father reads this website and realises that it’s ok to have the same or similar feelings and emotions to me then it would have served it's purpose.
When we were discharged from hospital in Feb 2003 we had no professional support in regards advice, counselling, or what to expect. We had no warning of the massive life long impact his condition was going to have on Lewis, and how it was going to change our lives forever in so many different ways. Our world was literally turned upside down from that day onwards and our lives will never be the same again.
I just want to make it crystal clear to any Father who is reading this that this is totally my experience of what it's been like for me, it doesn't mean that it will be the same for you, and please don't read this website and think there is no hope, there is always hope. If any part of this website can prepare another father for the challenges they may face in the future then it would have served it's purpose.
As a rule Men don’t normally or freely speak about their feelings and emotions (They feel it's a weakness, where it is quite the opposite!). It’s just the way it has always been (it is slowly getting better though with more awareness surrounding mental health). Men are often told to “man up” or just decide to put on a “stiff upper lip” and pretend that everything is alright for the fear of what their family, friends and others may think of them. This for me is a stone age way of thinking and it has to change. Men have feelings and emotions as well and they can really suffer badly with their mental health for long periods of time, and in lots of cases forever. They say “It’s ok not be ok” and this is very true, there is only so much a human being can endure until they break!.
I feel I have gained a great deal of knowledge about the extreme and ongoing challenges it takes to bring up a severely disabled child, and about all the countless obstacles which parents face. No one can prepare you for the journey you are going to take or continue to take, but if I can help or support just one father who has gone through or is going through what I have then it will be worthwhile spilling my guts!.
I’m going to be brutally honest and list absolutely everything I have been through and continue to go through as a father of a disabled child. There is no point in pretending it is easy, it isn't!. It's the hardest thing a father will have to go through in their life. Those who say it gets easier with time are completely wrong, it doesn’t!, it gets harder and more challenging and upsetting as the years roll by.
If one other father reads this website and realises that it’s ok to have the same or similar feelings and emotions to me then it would have served it's purpose.
When we were discharged from hospital in Feb 2003 we had no professional support in regards advice, counselling, or what to expect. We had no warning of the massive life long impact his condition was going to have on Lewis, and how it was going to change our lives forever in so many different ways. Our world was literally turned upside down from that day onwards and our lives will never be the same again.
We were on our own and basically told to get on with it!.
I believe there is a massive gap out there in regards support for fathers of severely disabled children.
I hate the thought of any fathers out there who are in a similar position and who have nowhere to turn and who must feel so alone. So, if there is any fathers out there with a special needs child then I would more than happy to have a chat on a one to one basis and try and help out in anyway I possibly can. I would be more than willing to discuss my experiences of the past 18 years and the numerous and ongoing challenges I have faced.
I don’t want anyone reading this website to feel sorry for me, that is not the purpose of it. I don’t want sympathy, but if it can help one other father realise that they are not alone, and that it’s ok to feel this way, and for them to have the strength to get in touch when they are ready, then it would have served it's purpose.
There must be so many father’s with disabled children who feel isolated and so alone, especially during the current Covid 19 pandemic, and if they want to get in touch and offload or discuss anything at all, then I would be more than willing to share stories, and discuss daily challenges which being a special needs father brings, as we are all singing from the same hymn sheet.
These are my personal twitter, instagram and facebook accounts if anyone wants to get in touch via these platforms.
Twitter: @TheJSNF
Instagram: garydherbert
Facebook: @JSNF20
If you want to email me please click the Get In Touch link
I believe there is a massive gap out there in regards support for fathers of severely disabled children.
I hate the thought of any fathers out there who are in a similar position and who have nowhere to turn and who must feel so alone. So, if there is any fathers out there with a special needs child then I would more than happy to have a chat on a one to one basis and try and help out in anyway I possibly can. I would be more than willing to discuss my experiences of the past 18 years and the numerous and ongoing challenges I have faced.
I don’t want anyone reading this website to feel sorry for me, that is not the purpose of it. I don’t want sympathy, but if it can help one other father realise that they are not alone, and that it’s ok to feel this way, and for them to have the strength to get in touch when they are ready, then it would have served it's purpose.
There must be so many father’s with disabled children who feel isolated and so alone, especially during the current Covid 19 pandemic, and if they want to get in touch and offload or discuss anything at all, then I would be more than willing to share stories, and discuss daily challenges which being a special needs father brings, as we are all singing from the same hymn sheet.
These are my personal twitter, instagram and facebook accounts if anyone wants to get in touch via these platforms.
Twitter: @TheJSNF
Instagram: garydherbert
Facebook: @JSNF20
If you want to email me please click the Get In Touch link
Read More: Lewis Story
The Journey of a Special Needs Father by Gary Herbert