I am a hard working mother of 2 children, I don’t have an actual paid job but I work damn hard and I am not alone, there are thousands of parents like me and my husband out there. My husband does have a paid job but he’s recently had to cut back his hours to part time because of the demands of caring for our son became too much. Our son, like your’s has cerebral palsy and he sleeps through maybe 4 nights a month if we are lucky.
We are exhausted and yet we have to carry on, my husband has to work because we were not born into privilege. The “benefits” (I hate that word it makes it sound like a bonus for having a disabled child) we receive are barely keeping our heads above water and we are struggling. As you will no doubt understand our son require a lot of very expensive equipment in order to just be able to sit up and even more to be able to engage with the world around him. He also relies heavily on the NHS to keep him a live to save his life when he had a massive seizure that almost took his life, he is not alone there are thousands like him.
I am writing this letter out of anger and frustration as I don’t think you really understand the crippling pressure families like us are under. Our children need expensive equipment and therapy but we are too exhausted to work to earn the extra money needed for such things, we sometimes lack the energy to shower never mind going to find a better job or work extra hours, we don’t have the luxury of a nanny so we can work full time and meagre 3 hrs a week of care offered is just enough time to do the shopping and have a shower.
We feel guilt every day that we are letting our son down by not being able to afford equipment he needs or extra therapy when he receives non through the holidays, we are not alone in this guilt.
Our biggest fear however is what will happen to our son when you and your posh mates have sold off the NHS to faceless uncaring private firms?? Will he survive into adulthood, will he get the medicines that keep him alive? And then we are worrying about next April. How will we survive on half a wage with less tax credits and still no sleep, we are not alone and we are not going to be the worst affected by these cuts. Ordinary people make this country what it is, we are the cleaners the care takes, the shop assistants and the teachers, the doctors and the nurses, if you your party of uncaring over grown school boys break us all down till we have nothing left to give then this country will be in a bigger mess than it all ready is. We are the foundation on which this country is built we do the dirty jobs we get our hands dirty and work damn hard to survive. We need our NHS and people need a proper living wage and proper support in times of need, I can see no reasons other than greed and lack of empathy why people are going hungry in Britain. How can you understand what people need or deserve when you have never been in a position of need or desperation. Look beyond your prejudice ideas that the poor are lazy, we are poor because the government have no idea what a living wage is.
Live a day in our lives and gain some understanding of reality!!
A very stressed and frustrated mum
I really didn’t want this to be a ranting, miserable blog but I really need to vent at the moment and this seems like the best place.
John turned 2 last June, if fact that was also the last time I posted, and about one week after his birthday he decided he does not like going to sleep any-more or staying asleep. Needless to say we are exhausted. People keep telling us it’s an age thing and maybe they are right but when he screams and shouts and flings himself about every time he gets tired and for a long time it is horrible and exhausting and no one seems to understand just how hard it makes doing simple, normal things. He shouts and protests about almost everything and although I am grateful that he knows what he wants and how to get it, I do wish he could just tell me in words rather than with the air raid siren impressions. His mood can chance faster than lightening from happy giggling John to full blown air raid siren with flailing limbs and arching back, these tantrums are usually only ended by presenting him with a muller rice or when exhaustion takes over and he falls asleep. It is making life quiet difficult, going out or even staying in has to be timed around when he is likely to kick off but as with most 2 year olds he like to keep us on our toes and never sticks to a routine.
and whilst we are battling with the frustration (his and ours) the exhaustion and general blah feeling it seems that (almost) everyone else i know with kids Johns age have been having a wonderful time, baking, singing, swinging at the park, splashing in the sea and general regular happy family stuff…and yes i admit although i am not proud of it I am very very jealous of their seemingly perfect lives and wish they would stop shoving it in my face!!! (i know i sound bitter and spiteful but i’m just knackered) I can’t help thinking that should have been us why was it our son, why John?
Finally have 5 minutes peace and quiet and am awake enough to think. Now i just don’t know where to start…I have had so many things I wanted to post about but my mind has been foggy from lack of sleep, now I can’t remember these things or they are out of context to what is going on right now.
All is well with John and his new baby brother, time has flown and Matthew is 10 weeks old and John will be 2 of friday…TWO!? how did that happen?. Time is a strange and mysterious concept, it does not feel like 2 years since John was born and yet it feel like he has always been here. Thinking about the days before his birth now as I type and it’s making me sad, that time of ignorant bliss and joyful expectation, if only we’d know what was about to happen…I’m going to stop there I do not want this blog to become a place for me to dwell in self-pity, John is a happy, amazing, determined, fantastic little boy and I want to celebrate the Joy that is John not mourn what he is not.
I just can’t believe my little boy is nearly 2.
Welcome to the world Matthew Rowan. Born 11/04/11 7lb 15.5oz.
I have just been reading a post over at Love That Max and it reminded me of a conversation I had with a good friend of mine a while back. We were talking about the “normal” things that we hope our kids will learn to do, you know (well if you have a kid with developmental delays you will) the usual stuff like talking, walking, using a toilet etc.. but one thing that really made me feel quite sad is that Monkey Socks may never be able to pick his own bogies! I know, random right? The thing is this is something that anyone who can do it does even if they won’t admit it and to not be able to would be like having an itch you can’t scratch. Things like getting about, sitting, communicating etc can all be aided with contraptions and gadgets. He may even learn to do these things without help in his own wonky way. But picking your nose requires very fine motor skills, trying to get a tiny little wiggley finger on the end of an un-cooperative arm into a tiny little nostril without getting poked in the eye might present a bigger challenge and as far as I know there are no bogey mining contraptions available to help. I know it’s random and weird but he can’t wipe his bogies on my shoulder forever…can he? and it’s just another thing on a seemingly endless list of “normal” childish things my little fella might never do.
Hello and welcome to my blog. I have been debating starting this blog for some time now, and I have finally got around to it so here goes.
Monkey Socks is my first child (real name John), he is 21 months and 4 days old and due to problems at birth he has cerebral palsy. Sometime in the next 3 weeks Monkey will become a big brother, and I a very busy mammy, so I thought I had better get started before the chaos begins.
Here as the title suggests, I will write about him and his adventures, the ups and downs of figuring out how to do things when your muscles don’t work the way they should (which at the moment means shout till mammy or someone else does it for you).
Monkey Socks is currently at physio with his Daddy which means I have an hour or 2 of rare peace and quite so I can think, but I haven’t had breakfast yet and my head is a little fuzzy because of this and lack of sleep and hormones so I think I shall make some breakfast and then continue with introductions later.