Monday, 14 January 2013

Would you work 100 plus hours a week for pennies?

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.


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
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.

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?
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?






27 comments:

  1. Oh Lynne, I'm so sorry to read that Jack has had a bad week :( I'm glad you've got Holly to keep you laughing though - she's very good at that! Wish I could come back up and help, even if it is only running around fetching things, or letting you sit down, put your feet up for a wee while, and popping the kettle on :) No doubt I'll be seeing you again soon! Keep on laughing :)

    Georgia xxxxx

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    1. Hey Georgie, it's just the usual stuff :( Yes, I wish you were able to visit, you know you can come any time you like, you are always welcome, especially since you make such a mean cup of tea! xxx

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  2. I get so tired of hearing "if you don't want to work then you shouldn't have a place to live and food to eat" and "lazy people just want the government to take care of them." How could anyone think YOU are lazy with all you do? And what about people who want jobs but can't find them or can't work at their former professions because of injuries? What are we supposed to do? Work at those jobs anyway and make our pain worse? Thank God for Holly.

    Love,
    Janie

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    1. I know Janie! The things people say sometimes shocks me to the core but I am a great believer in Karma, you chuck it out there and it will come back to you ten fold. People truly have no idea, different story when it happens to them or their relatives :)

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  3. wHAT DO i think? I think you are an absolute saint, my friend. It really is criminal how they are cutting these disability payments. I always say to my husband that it's hard enough having a child like that in the first place, without all this extra worry . It really is ridiculous how even Millionaires can claim child benefit and heating allowance etc., when they are cutting benefits with REAL needs. I'm sorry to hear that poor Jack hasn't been so well again. Beautiful photo of the two of you together. He really is such a gorgeous, handsome lad. It's wonderful how you can have so much laughter and fun with Holly. I guess it helps to keep you sane. Take care, and don't let the buggers get you down!! xx

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    1. Yes the cuts are causing so much worry and suffering to the people who genuinely need the support. David Cameron should really be ashamed. Jack really is so so gorgeous and I love stealing cuddles from my boy x

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  4. Lynne - i'm totally with you girl.
    Even tho Peter is physically ok, his developmental delays mean he is vulnerable and with strangers could be trusting. So i can't leave him at, let him go off on his own the way that most 23 yo can.
    Then i have his support to keep on top on, his respite to organise, running battles with the social workers.............. (you didn't mention that one)
    Then the guardianship to deal with - i need to keep details, let them know what Peter's money is spent on.......

    Truly, some of these politicians should come and do our jobs for us.

    Holly - Like Louise and Paul - is great - but that's a whole other story - we don't want them to feel they "HAVE" to be there to help.

    We wonder WHY we are raving bamsticks!!!!


    Oh - and i HATE the shaving bit as well. Buy an electric shaver - no nicking and blood that way, Still never get it right, so i get Matthew or Paul to do the dirty every so often - will send one of them up to help if needed!!!

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    1. Julie, I am dreading the guardianship palaver! I have an electric shaver, it's been charged for forever but still not used it...eek!

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  5. Lynne, your day - just ONE day - would exhaust ALL of those ignorant dolts who say stupid things like 'drain on the system.' They also seem to be the same people who stand around at parties bragging about how their accountant is brilliant enough to ensure that they don't have to pay any tax, yet don't have the wit to realise, therefore, that they contribute nothing to society.

    Your ability to find and enjoy having a laugh is a very special one!

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    1. That is so so true. The more money they have, the less tax they feel they should pay!

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  6. First, your kids are amazingly gorgeous. Second, I wish the gov't overseers would come and walk in your shoes for 24 hours (as would anyone else who says families like yours are a "drain").

    You are a true inspiration. Hugs to you and your lovely boy and girl.

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    1. They would have to sleep for a week if they spent 24 hrs in my shoes! lol hugs to you to :)

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  7. Grrrrrrr. I am sure you can hear my teeth gnashing across the pond on your behalf. HOW DARE that arse [excuse me] says you and Jack are a drain? That's the problem with ignorant people - they think they know it all and in fact, know nothing and it shows. I think I would be first [but not the only] in line to give him/her a good smack. I am not one for physical violence, but in this case? I would make a quick exception.

    I think we have all said it before - and we/I truly mean it - how DO you do it? I understand the whys - as a Mother I understand the deep and abiding love we have for our children and would put our lives on the line for all of our babies, but you literally do daily. I mean how have you not collapsed from sheer exhaustion? Even on my very best day years ago I doubt, no, I KNOW, I would not have the wherewithal that you do and I certainly would never be able to keep such an upbeat attitude about it all. How do you not constantly question "WHY?" Why Jack? Why you? I know that Jack is a teenager now so you have probably already gone through those type of questions - and I do, so much, admire you and Holly for your strength and humor in your daily lives. It would destroy most people I know, me included.
    Healthcare, such as your country and Canada have, are greatly envied here in the states as we pay quite dearly for what healthcare we can get, but I see repeatedly that there are benefits and downfalls to each, especially when it comes to long term and respite care. Once we have paid our premiums we are able to see doctors of our choosing, but when it comes to anything long term [lifetime like Jack's] there is usually a monetary cap - which has never made sense to me - what? They expect that the patient's life expectancy is only a $1 Million USD? So when that well runs dry, what then? The patient is to die? Or the family is just to figure something else out? Don't the insurance companies think we would've been doing that to begin with if we could? The government programs are a good stop gap in that they have no limits, but the paperwork is as frustrating here as I am sure it is there. I don't know exactly where I am going with this - and try as I might to empathize, I know that I can't because I have never had to jump through the hoops or deal with what you have. I certainly sympathize, with good faith, but through the tears I have as I read your post, I know that you are special woman with a capacity that God gives to very few people and I know that as lucky as we are all to know you and call you friend, Jack [and Holly] are the luckiest in have a Mom just like you.
    Please know, and I mean this from my heart, that you three are always first in my prayers. I know we all have different beliefs and I don't know yours, so I hope that doesn't offend you in anyway, but is the only thing I can offer in the form of a hug and friendship from so far away. Otherwise if we were in the same town I would pack of Wallene, you and Holly and we would ALL rock out in Oscarz. giggle - So funny you mentioned doing that with your daughter because Wallene and I did the SAME EXACT thing in the parking lot of our local clothing store the other night. All these young people in their workout gear were walking to the adjacent gym and we caught quite a few smiling at the two of us acting like goofs, while the car [literally shook - Oscarz isn't exactly big y'know heehee] and they could hear our singing and the music through our closed windows. Hey, if it made their night more smiley? Good - because it sure left us in tears. Nice to have the girls we do, isn't it Lyndy? All our children are blessings, but sometimes you have to go and be one on one with each of them, to let loose and make the memories for a lifetime.
    Okay, okay - I have blathered on long enough, but please know I am always thinking of you all. Love always, Skip!

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    1. Skippy, I love that you feel so passionately about us that you felt the need to rant <3 I am not religious but I am spiritual and I am very grateful for your prayers, I don't know what I would have done without my lovely Holly to be totally silly with. She really is the ying to my yang.

      I went through the why Jack, why us, year's ago but not in the way you think. I couldn't understand why, if there was a god, he would possibly give a child like Jack to me, who knew so little about disability, doctors etc etc.

      I know that although it is tough, to not have him would be the worst of the worst so that is why I focus on the positive as much as possible.

      Love and hugs to you Lynne xxxx

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  8. I think fools and asses who haven't had to walk half a minute in your shoes are the ones who come up with the fiscal cuts and ridiculous comments.
    Love the picture of you and Jack, how tender...
    Give Ms Holly a hug for me I'll always be her personal cheerleader...and yours!

    Kick the rest of the idiots that get your dander up in the butt for me!
    Hugs~

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    1. Fools and asses is exactly right. Next time I kick butt, I will tell them that Sush told me to do it! lol x

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  9. Reading it like this really says it like it is, and still you keep on smiling :) Inspirational as always xx

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  10. All I can say is that I'm in awe of you and all you do! Good thing you are so tough :)..

    Your darling kids are sure growing up! Shaving? holycow! So nice you and Holly have such a wonderful realationship.

    Take it easy.

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    1. I know you never realise how tough you are until you are put in that position :)

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  11. Im glad you at least had a fun time with your friend!

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    1. Gotta have as much fun in your life as is possible :)

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  12. Visiting from SITS! I'm glad to have read this post. I think it's important to share all that you have to do in order to care for your son. It's a massive amount and people on the outside wouldn't truly understand without really seeing/reading first hand. Kudos to you. And, I hope he has a better week on the horizon.

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    1. Hi there, thanks for popping in. I agree that people really have no idea so letting them know can only be good.

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  13. I think people need to keep their mouths shut! That's what I think. I will never understand why people think it's OK to fly off at the mouth the way they do. You are a strong mommy! don't let naysayers bring you down.

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    1. I totally agree and I will try not to let them get to me :)

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Laughter is the best medicine and it's free. Thanks for visiting my blog and I look forward to hearing from you.

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