I have always believed that laughter is the best medicine and I have been getting it by the bucket load since Holly Dolz came home for Christmas.
She is the person I get to be childish and totally daft with. Last Saturday we were out and about trawling the D.I.Y shops. We were fed up looking at paint and wallpaper so we had a drive around before going to the last shop.
We had the new Fun cd playing in the car and we had been dancing and singing at the top of our voices. We pulled into the car park of B & Q where we had a mad 5 mins, dancing and singing in the car. No one paid us any attention which made us laugh all the more! Holly was doing this crazy kind of dance with her hands flailing in the air, head shaking forwards and backwards and honestly she looked like she was having some kind of seizure!! I was crying with laughter. I think even Jack would have laughed if he had been there.
The giggling continued while we shopped and all the way home. As I was trying to reverse the car into my drive, we were giggling and laughing then she said something that made us both laugh so hard that neither of us could get breath! So there we were halfway across the road, blocking both sides, unable to speak, helpless with laughter and tears were running down our faces. We must have been blocking the road for over 5 minutes!
Truly she is the best tonic for me.
Jack hasn't had a great week. The seizure monster has been out to get him. Friday was the best day as he was able to sit up and roll around on the floor. For Christmas, I bought him some clip together mats but still he manages to split them and this means his skin gets rubbed on the carpet. When I was putting him to bed last night, his wee knees were red from trying to get up and his knuckles on one hand were red too.. A bit of moisturiser and this morning they were as right as rain.
When he came home on Thursday he was sleepy from a seizure so I hoisted him onto his beanbag where he lay listless and lethargic. I took this opportunity to get in there for a cuddle, a wee sing song and some tactile play. He rewarded me with such a heartbreakingly beautiful smile that I had a lump in my throat but then the magic was broken as he literally tried to climb out of the bean bag. No mean feat, believe me!
He is such a precious little boy. Mind you he is so not little these days...that boy has been sprouting chin hair for months. I have resisted the urge to start shaving but it looks like the time has come.....oh my god....how do you shave a guy??? Answers on a postcard please....
Recently, with all the stuff in the news about cuts to benefits for people with disabilities I am beginning to wonder at times how I do actually manage to keep smiling. Then someone mentioned families like me who are a drain on the state and it is enough to make me want to scream.
I don't actually get that much from the government and when Jack happens to be in hospital for too long, the little I get is taken away from me as it is deemed that the hospital is essentially doing my job for me. This is such a lot of bullshit!
Most parents of children with a disability like Jack's are unable to leave their children all day every day in the care of nurses as they do not have the time to give him the kind of care and attention he needs. It costs parents more when their child is in hospital as although often their room is free, cooking facilities are very basic, just a microwave and we all know how much microwave meals cost! Then there is the constant travel when your child is not in a local hospital. On top of that you are still running a home cos your other child is being looked after by someone in your house. I could go on and on but really, what is the point?
So I thought I would give you just a wee sneaky peak into my world.
Looking after Jack, although a lot of work, is by far the easiest part of caring. I love him so therefore it is not a chore. The stuff that gets me down is the endless shit that goes with that. There are so many people involved in Jack's life, many people coming in and out of the house, lots of appointments, meetings, therapies, school. Often the appointments are a few hours away which takes up a whole day. Then there are the everyday niggles that school and respite have, that seem huge to them but make me think....."what NOW?"
Everyday Jack goes to school with a feed pump, feed, suction machine, school bag, magnet for his VNS, seizure diary, school diary, protective helmet, his soft collar for his neck, a spare peg in case his falls out and his emergency meds with the protocol. If I forget any of this it means I have to trudge off to the school to hand it in.
As well as that I have to be in for deliveries of all his feed, syringes, sterile water, pads etc then unpack it all and find places to put it. Jack's bedroom often resembles a storage room with boxes piled up. I have to constantly keep on top of what medication he still has, what's required and it seems every week I am ordering something or other. On top of that I have to get the spare equipment for his suction machine from another source so constant juggling and remembering things are the name of the game. Forgetting a medication is a disaster on an epic scale as most of his epilepsy meds have to be specially ordered.
His bed is constantly plugged into the electricity and nightly I have to make sure his hoist, feed pump and suction machine are charged. My electricity bills are not your normal household bills and my heating is just as bad as it is really important to keep him warm.
A set of bedding gets washed every day along a v pillow cover, a protective mat and at least two sets of pj's. I only get so many syringes so they have to be washed and reused. I have to say, in all, this is the job that sucks my will to live the most! Tee hee hee.
When I pack a bag for him to go to respite, it takes me nearly two hours as all his clothes have to be labelled and listed. All equipment going with him has to have their chargers with them and I have to make sure there is just the right amount of feed, syringes etc with some spare in case of accidents. Medicine has to be counted out as you can not give them too much, just enough for the doses while he is there and then again, some extra just in case.
I am on constant call from the school and respite so my mobile and I are practically joined at the hip. Respite doesn't mean "let's party!" it's more likely to be "let's collapse!"
If I was in full time employment, I would actually be working nearly three 40 hour week jobs? No way on earth would an employer be allowed to work you that hard yet it seems the government think you should and save them a fortune.
What do you think?
She is the person I get to be childish and totally daft with. Last Saturday we were out and about trawling the D.I.Y shops. We were fed up looking at paint and wallpaper so we had a drive around before going to the last shop.
We had the new Fun cd playing in the car and we had been dancing and singing at the top of our voices. We pulled into the car park of B & Q where we had a mad 5 mins, dancing and singing in the car. No one paid us any attention which made us laugh all the more! Holly was doing this crazy kind of dance with her hands flailing in the air, head shaking forwards and backwards and honestly she looked like she was having some kind of seizure!! I was crying with laughter. I think even Jack would have laughed if he had been there.
The giggling continued while we shopped and all the way home. As I was trying to reverse the car into my drive, we were giggling and laughing then she said something that made us both laugh so hard that neither of us could get breath! So there we were halfway across the road, blocking both sides, unable to speak, helpless with laughter and tears were running down our faces. We must have been blocking the road for over 5 minutes!
Truly she is the best tonic for me.
 |
| Funny girl |
Jack hasn't had a great week. The seizure monster has been out to get him. Friday was the best day as he was able to sit up and roll around on the floor. For Christmas, I bought him some clip together mats but still he manages to split them and this means his skin gets rubbed on the carpet. When I was putting him to bed last night, his wee knees were red from trying to get up and his knuckles on one hand were red too.. A bit of moisturiser and this morning they were as right as rain.
When he came home on Thursday he was sleepy from a seizure so I hoisted him onto his beanbag where he lay listless and lethargic. I took this opportunity to get in there for a cuddle, a wee sing song and some tactile play. He rewarded me with such a heartbreakingly beautiful smile that I had a lump in my throat but then the magic was broken as he literally tried to climb out of the bean bag. No mean feat, believe me!
He is such a precious little boy. Mind you he is so not little these days...that boy has been sprouting chin hair for months. I have resisted the urge to start shaving but it looks like the time has come.....oh my god....how do you shave a guy??? Answers on a postcard please....
 |
| Gorgeous boy |
I don't actually get that much from the government and when Jack happens to be in hospital for too long, the little I get is taken away from me as it is deemed that the hospital is essentially doing my job for me. This is such a lot of bullshit!
Most parents of children with a disability like Jack's are unable to leave their children all day every day in the care of nurses as they do not have the time to give him the kind of care and attention he needs. It costs parents more when their child is in hospital as although often their room is free, cooking facilities are very basic, just a microwave and we all know how much microwave meals cost! Then there is the constant travel when your child is not in a local hospital. On top of that you are still running a home cos your other child is being looked after by someone in your house. I could go on and on but really, what is the point?
So I thought I would give you just a wee sneaky peak into my world.
Looking after Jack, although a lot of work, is by far the easiest part of caring. I love him so therefore it is not a chore. The stuff that gets me down is the endless shit that goes with that. There are so many people involved in Jack's life, many people coming in and out of the house, lots of appointments, meetings, therapies, school. Often the appointments are a few hours away which takes up a whole day. Then there are the everyday niggles that school and respite have, that seem huge to them but make me think....."what NOW?"
Everyday Jack goes to school with a feed pump, feed, suction machine, school bag, magnet for his VNS, seizure diary, school diary, protective helmet, his soft collar for his neck, a spare peg in case his falls out and his emergency meds with the protocol. If I forget any of this it means I have to trudge off to the school to hand it in.
 |
| Jack's daily medicine box |
 |
| Some boxes are inside others and on top of others to make them fit! |
As well as that I have to be in for deliveries of all his feed, syringes, sterile water, pads etc then unpack it all and find places to put it. Jack's bedroom often resembles a storage room with boxes piled up. I have to constantly keep on top of what medication he still has, what's required and it seems every week I am ordering something or other. On top of that I have to get the spare equipment for his suction machine from another source so constant juggling and remembering things are the name of the game. Forgetting a medication is a disaster on an epic scale as most of his epilepsy meds have to be specially ordered.
His bed is constantly plugged into the electricity and nightly I have to make sure his hoist, feed pump and suction machine are charged. My electricity bills are not your normal household bills and my heating is just as bad as it is really important to keep him warm.
A set of bedding gets washed every day along a v pillow cover, a protective mat and at least two sets of pj's. I only get so many syringes so they have to be washed and reused. I have to say, in all, this is the job that sucks my will to live the most! Tee hee hee.
When I pack a bag for him to go to respite, it takes me nearly two hours as all his clothes have to be labelled and listed. All equipment going with him has to have their chargers with them and I have to make sure there is just the right amount of feed, syringes etc with some spare in case of accidents. Medicine has to be counted out as you can not give them too much, just enough for the doses while he is there and then again, some extra just in case.
 |
| Guess who this belongs to? |
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| This is one half of Jack's respite bag, this part is full of feed, syringes, pads, etc |
 |
| This is the other half filled with clothes |
 |
| This is the two parts joined together ready to go |
I am on constant call from the school and respite so my mobile and I are practically joined at the hip. Respite doesn't mean "let's party!" it's more likely to be "let's collapse!"
If I was in full time employment, I would actually be working nearly three 40 hour week jobs? No way on earth would an employer be allowed to work you that hard yet it seems the government think you should and save them a fortune.
What do you think?
