I am tired.
I am struggling.
I am overwhelmed.
I feel inadequate.
I am hiding.
I am struggling to get motivated.
I struggle to get out of bed.
I struggle to smile.
Little things stress me out.
I can be tearful at the drop of a hat.
I feel isolated.
All of the above statements are true at the moment.
Do you ever feel like everyone wants a piece of you and if you give them what they need you are going to shatter into a million tiny pieces?
I don't understand it. But I know what it is.
Loss.
No one has to have died for a person to experience loss.
I live with it daily. This roller coaster life that I live with my very precious and sweet child, who has more health issues than you could shake a stick at, is tough.
People have told me that I have a choice! A choice to what I ask? To care for him, they reply.
These are two types of people who say this: professionals and people who have not an ounce of empathy!
I do not care for him out of duty. What most people just don't get is how much I love and adore him. Jack has the right to life in a family environment in the care of people who love him surely?
It would be like me suggesting to a mother of a very healthy, naughty child that really, he would be better off in care....can you imagine the furor that would cause? Not to mention the offense she would take!
Jack, Holly and I have a bond that is so damn strong. I have no idea what the future holds for Jack but with 3 significant episodes of deterioration in his health over the past 4 years, I can only imagine what is next.
I am not selfless. I have not put my life on hold for him. I don't feel that he holds me back or stops me doing things.
Actually it's the other way around. I often feel that I don't give him enough opportunities and that our world has become so small. I am only one person so going places with him requires help as I can no longer lift him alone not to mention the emotional and physical toll it takes on me.
Planning a day out or a short trip away is a major operation. Jack's entourage would make a celebrity jealous!
Then there is the problem of changing him when we are out and about. Disabled toilets are a joke if you are unable to move your body yourself so the only alternative is to change him on a dirty floor in said toilets but now he is even too big for that!
Visiting friends is a no no cos most of them have steps up to their house and it costs a fortune to buy portable ramps. In fact anything specifically for the "disabled" gives companies carte blanche to charge 3 times as much for it!
This is not a pity party, far from it. I just need to get this out otherwise it is going to erupt out of me like a volcano!!!
I very rarely tell it like it is cos when I do, people say the most stupid things!!!
A friend of a friend, after hearing how ill Jack had been, said " you just don't have a life do you?" Resisting the urge to smack her one, I replied " if I didn't have a life then I would be dead!"
Just because my life is so damn different to yours doesn't make it any less valuable!
I do what I do, I get by, I ride the storm. I am strong but I am expected to be stronger.
The respite unit Jack goes to were feeling overwhelmed by the level of care that he now requires. They wanted more support from the NHS to look after him. They dumped this on me as I went to pick him up the first time he was in respite after coming out of hospital.
What the hell? They got the reassurance they needed eventually but it meant 4 months of uncertainty for me.I don't think they realize that it has hurt our working relationship.
I never complain about the level of care Jack requires, I am just grateful that he has survived the latest trauma and he is still with me.
There are so many ordinary people like me in the this world. Fighting to keep upright in extraordinary circumstances where they are pushed to the limit.We don't want pity, just understanding, support, love,a tiny bit of empathy and for our voices to be heard.
We may be down, but we are definitely not out. Thanks for listening.
I am struggling.
I am overwhelmed.
I feel inadequate.
I am hiding.
I am struggling to get motivated.
I struggle to get out of bed.
I struggle to smile.
Little things stress me out.
I can be tearful at the drop of a hat.
I feel isolated.
All of the above statements are true at the moment.
Do you ever feel like everyone wants a piece of you and if you give them what they need you are going to shatter into a million tiny pieces?
I don't understand it. But I know what it is.
Loss.
No one has to have died for a person to experience loss.
I live with it daily. This roller coaster life that I live with my very precious and sweet child, who has more health issues than you could shake a stick at, is tough.
People have told me that I have a choice! A choice to what I ask? To care for him, they reply.
These are two types of people who say this: professionals and people who have not an ounce of empathy!
I do not care for him out of duty. What most people just don't get is how much I love and adore him. Jack has the right to life in a family environment in the care of people who love him surely?
It would be like me suggesting to a mother of a very healthy, naughty child that really, he would be better off in care....can you imagine the furor that would cause? Not to mention the offense she would take!
Jack, Holly and I have a bond that is so damn strong. I have no idea what the future holds for Jack but with 3 significant episodes of deterioration in his health over the past 4 years, I can only imagine what is next.
I am not selfless. I have not put my life on hold for him. I don't feel that he holds me back or stops me doing things.
Actually it's the other way around. I often feel that I don't give him enough opportunities and that our world has become so small. I am only one person so going places with him requires help as I can no longer lift him alone not to mention the emotional and physical toll it takes on me.
Planning a day out or a short trip away is a major operation. Jack's entourage would make a celebrity jealous!
Then there is the problem of changing him when we are out and about. Disabled toilets are a joke if you are unable to move your body yourself so the only alternative is to change him on a dirty floor in said toilets but now he is even too big for that!
Visiting friends is a no no cos most of them have steps up to their house and it costs a fortune to buy portable ramps. In fact anything specifically for the "disabled" gives companies carte blanche to charge 3 times as much for it!
This is not a pity party, far from it. I just need to get this out otherwise it is going to erupt out of me like a volcano!!!
I very rarely tell it like it is cos when I do, people say the most stupid things!!!
A friend of a friend, after hearing how ill Jack had been, said " you just don't have a life do you?" Resisting the urge to smack her one, I replied " if I didn't have a life then I would be dead!"
Just because my life is so damn different to yours doesn't make it any less valuable!
I do what I do, I get by, I ride the storm. I am strong but I am expected to be stronger.
The respite unit Jack goes to were feeling overwhelmed by the level of care that he now requires. They wanted more support from the NHS to look after him. They dumped this on me as I went to pick him up the first time he was in respite after coming out of hospital.
What the hell? They got the reassurance they needed eventually but it meant 4 months of uncertainty for me.I don't think they realize that it has hurt our working relationship.
I never complain about the level of care Jack requires, I am just grateful that he has survived the latest trauma and he is still with me.
There are so many ordinary people like me in the this world. Fighting to keep upright in extraordinary circumstances where they are pushed to the limit.We don't want pity, just understanding, support, love,a tiny bit of empathy and for our voices to be heard.
We may be down, but we are definitely not out. Thanks for listening.
