The Impact on My Family Life
Financial Impact on Family Life
The financial impact of having a child with a severe disability is immeasurable and life long. They say it costs 3 times as much to bring up a disabled child from 0-18yrs than it does a “normal child”, and we have seen this first hand it is certainly the case!. We have had to fight to get Lewis everything he is entiled to, your not told, you have to find everything out for yourself and fight or absolutely everything, which is exhausting and which shouldn't be the case.There is always equipment, products and adaptations which need purchasing when you have a disabled child and this doesn't stop, it continues on a regular basis as they grow and their body changes.
Lot’s of the equipment and adaptations aren't available through the NHS or statutory services, so it’s left to the parents to try and find the necessary money through approaching family, charities, fundraising and taking our loans. The NHS and statutory services provide the bear minimum, even when it’s not suitable for children with extremely complex needs like Lewis.
We are and continue to be in constant large debt. We are both unable to work due to being full time carers for Lewis as he needs 24 hour 2-1 care. We are on income support, our outgoings far out weigh our incomings (benefits) on a monthly basis. So month in month out there is a sizeable deficit which accumilates and grows month in month out.
We feel like we are being punished through no fault of our own, we have been dealt these cards and feel so restricted.
Money (or the lack of it) totally consumes my mind on a daily basis. It causes me stress, worry, anxiety and depression as there is not a single thing I can do about it, it’s out of my control.
Fortunately, we have an extremely supportive family. I have literally lost count of the amount of times Lewis' grandparents have helped us out and save us financially during the past 18 years. We are so very lucky to have their support and I simply don’t know where we would be now without them. We will always be eternally grateful to them for their support, we are so lucky to have them in our lives.
They have been amazing and extremely generous to us when we have needed it the most, however we absolutely hate asking for help, and it does make me feel like a failure of a father as your meant to provide for your family and I can’t. It does leave you feeling worthless and it can be sole destroying having to rely on others, this situation does have a massive negative affect on my mental health.
We have basically had to work tirelessly since 2005 fundraising for Lewis (www.lifeforlewis.co.uk) to have been able to get him everything he has needed. So many people have been extremely kind and generous towards Lewis and our family and without every bodies generosity he would not have had any of the vital disability specific items and equipment which he has desperately needed over the years.
People's generosity towards Lewis will never be forgotten and we will be eternally grateful to every single person who has helped and supported us during the past 5 years, but there is a fundamental problem, we shouldn’t have had to raise the money ourselves for vital equipment and adaptations for Lewis to live safely on a daily basis, the exact equipment he needs should have been provided, not just the bare minumum, which isn't suitable for him, but it's simply not!. It's always left to the parents of disabled children to pick up the pieces which simply isn’t fair when they have enough to do on a daily basis caring for their child without the added stress of constantly having to find money for equipment and adaptations etc.
People's generosity towards Lewis will never be forgotten and we will be eternally grateful to every single person who has helped and supported us during the past 5 years, but there is a fundamental problem, we shouldn’t have had to raise the money ourselves for vital equipment and adaptations for Lewis to live safely on a daily basis, the exact equipment he needs should have been provided, not just the bare minumum, which isn't suitable for him, but it's simply not!. It's always left to the parents of disabled children to pick up the pieces which simply isn’t fair when they have enough to do on a daily basis caring for their child without the added stress of constantly having to find money for equipment and adaptations etc.
We have been extremely lucky to have had so many generous people supporting Lewis and our family, but some people are not lucky enough to have that, and my heart really does go out to them, as they must feel they have no where to turn and have been let down when they need the support the most, the system is wrong, so very wrong.
As soon as you say it's a special needs bespoke product then the price trebles, which is so morally wrong. There are so many companies making a lot of money out of people's misfortune which is just wrong, I hope they are able to sleep at night.
My Amazing Wife Lexi..
I love my wife Lexi so much and always will. She is incredible and the most caring and selfless person I have ever met. She always thinks of others before herself and I am a very lucky man to have her as my wife. We have been together for 25yrs and she has always been there for me and fully supported me with everything I’ve done (no matter how stupid!).Lexi is my love and soulmate and I couldn’t have got through the past 18 years without her. We have been through so much together and I love her with all my heart, and always will.
Having a disabled child has however inevitably put a strain on our relationship at times during the past 18 years. We have had to sacrifice so much during the past 18 years, and that includes being able to spend quality time together. We very rarely go out together as a couple due to our caring commitments and very rarely have the opportunity to do what “normal” couples take for granted.
We can’t just drop everything and go out like normal people, everything has to be planned well in advanced and quite often when it comes around to it we are both so exhausted, that we can’t be bothered anyway.
On top of this we are always both exhausted due to everything which is involved in bringing up a disabled child, as well as two other children, and obviously this can n occasions cause some arguments and stress etc.
We can’t just drop everything and go out like normal people, everything has to be planned well in advanced and quite often when it comes around to it we are both so exhausted, that we can’t be bothered anyway.
On top of this we are always both exhausted due to everything which is involved in bringing up a disabled child, as well as two other children, and obviously this can n occasions cause some arguments and stress etc.
The constant financial worry also causes us both stress and anxiety.
I know I take out my bad moods and stress on Lexi as she is the only one who understands me and what I’m going through, and I apologise greatly for that, but they say you take it out on the person who you are closest to and Lexi certainly is that.
I feel that we are a team and we can get through anything which life throws at us. I love you dearly Lexi and always will xx
I know I take out my bad moods and stress on Lexi as she is the only one who understands me and what I’m going through, and I apologise greatly for that, but they say you take it out on the person who you are closest to and Lexi certainly is that.
I feel that we are a team and we can get through anything which life throws at us. I love you dearly Lexi and always will xx
My Amazing Wife Lexi
My Equally Amazing Children.. Kira and Oscar
We have been very lucky enough to have been blessed with two other amazing children, Kira age 15, and Oscar age 8.They are our world and really do keep us going through some extremely dark times. At present the are developing normally and are so much fun (most of the time!) and provide us with a lot of happiness. They are both wonderful children and bring us a bit of normality and we love them both very dearly and would do absolutely anything for them.
However, it must be so hard for them growing up with a severely disabled brother, they have and will continue to see things they should never have to witness at such a young age. For example a few years ago our Oscar (who would have been about 6yrs) said “He’s literally going to die” during one of Lewis’ really nasty seizures, you can’t imagine what he must have thought and what impact it will have on him as he gets older. They say that it is the siblings that suffer the most when having a disabled sibling and I can really see why this is the case.
We try so hard to split our time between all three children, but this is simply not possible due to Lewis’ severe disability and the amount of care he needs. No matter how hard we try they do both miss out on a lot of our time as there simply isn’t enough time in the day. This fills me with incredible guilt on a daily basis, they must always hear me saying “We can play in a minute, I’ve just got to do this for Lewis or that for Lewis”, it must be all they ever hear, and I can hear myself saying it as well which makes it even worse.
The amount of parents I hear say “I wish so and so wouldn’t have grown up so quickly”, and “where’s my baby gone”, we would have longed for Lewis to grow up quickly.
The amount of parents I hear say “I wish so and so wouldn’t have grown up so quickly”, and “where’s my baby gone”, we would have longed for Lewis to grow up quickly.
I really hope that when Kira and Oscar grow up they realise how much Lexi and I love them, and that we have and will always continue to try our very best for them.
My Amazing Children.. Kira and Oscar
The Impact on My Family Life..
The Journey of a Special Needs Father by Gary Herbert