Meeeeeeeeeee's Blog
Being a bit of a bad blog buddy
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I’ve been really bad updating recently as I don’t know how to put into words my emotions.
My dad who you will now I love loads and usually he tries to see me at least once a week
and loves spending time with the children and I’d booked a holiday to the seaside his favourite
place for the end of september all good fu for him and children.
Well he was diagnosed with stomach cancer during the 6 weeks holiday and it is terminal and was given
about six months to live,the cancer is in exactly the same place as people have gastric bands fitted
in order to lose weight,he now weighs about 6 and half stone and at 5ft 10 looks like someone who has been
in a concentration camp.
Cant operate so buy a little time by chemo but was told today he is too weak for chemotherapy so option is
put a tube in stomach and feed over night at home to try and get weight and strengh up to attempt chemo.
I tried so hard to find the words to tell the children I managed it as best I could,I’m not coping very well
so snappy and emotional and not much appetite,but I have children who need me so I get up and do what needs
to be done.I hate seing my dad suffer and I can’t help him..my big sister rings me upset and needing me as
a shoulder to cry on and my younger brother does as well both turning to me for support,I am trying to help
but I don’t think they relise that being single mom with special needs children and trying to be a rock for
my dad also they are heaping so much pressure on me and if I try to take a break and find time for myself which
I need they make me feel guilty,not intentionally I hope and I understand they hurt too.
My dad has told me not to cancel holiday as I can’t do anything and he wants the kids to have fun and I need a
break,so I am doing as he said and will try to enjoy it for the kids sake.
I’ve had a few hard conversations over the last couple of weeks,my dad wanted to see me with a nice guy to take care
of me and possibly walk me down the aisle,he wanted to meet Isaacs dad as father of his grandchild and as never met him
he wanted to see Carrie-ann go to university and quite a few things I cant do in the space of less than six months.
I’ve run up an horrendous phone bill ringing around for him getting him the help he needs to make his time on earth easier
and am doing all I physically can,but it doesn’t seem enough.
You will have to excuse the grammar typos and whole content as I’m crying as I type,and am feeling a little sorry for
myself as i’m supporting everyone and haven’t got anyone to support me through this hard time.
I do really like my blog to be positive but I’m finding it hard to end on a positive note.
microcephaly awareness day
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Last year on the 30th of september the first national microcephaly awareness day was held and people were urged to wear red to show support and raise awareness.
I set this up via my son robins facebook group as microcephaly is a very rare disability and it was a sadly overlooked disability it went really well with people over the uk wearing red for the day a bus company in portsmouth wore red,various schools wore red and the money raised went to bibic a charity which helps children with various brain injuries and disabilities including microcephaly.
Last year I was busy emailing downing street,even our majesty the queen was asked if she would support us by wearing red and giving press interviews,I was quite surprised I have been asked by a charity in USA the children with microcephaly foundation if they can join us this year and make it global.
I obviously said yay as it is doing exactly what I aim to do and make this rare disability known,this year we are wearing yellow as it is the charities colour and as it is the only charity for microcephaly in the world I agreed to change the colour.
As robin started this campaign I was asked if his photo could be used on the press release and flyers again I have agreed Robin is saying wow I’m going to be famous in america not quite as famous as michael jackson.
The press release has been done today and flyers I have just emailed off a photo of young man so it can get into circulation,jenniffer the president of the charity is going to send copies of the press release and flyers.
It goes to show if you think you are too small to be effective you have obviously not been in the dark with a mosquito,from a small person like me wanting help my son lots of children and parents will be helped all because an eleven year old boy wanted people to be aware of his disability.
Robin had ideas and is being helped bring them to light by our american friends,I am so proud of my son he is an inspiration that even though he has learning disabilities and physical disabilities he wont give up.
Tags: awareness, brain injury, charity, children, disability, family, pride, random, special needs
fun and family
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robin wanted to go to go ape an assualt course in the trees,they started 30 ft high the got higher as carrie-ann isn’t 18 yet she couldn’t be his responsible adult so I had to..gosh was I scared you can just about see me as carrie-ann took a few mobile snap shots,Isaacs face is a picture as he watches.
wow finally get online
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It has been an hectic few weeks,Isaac had mild swine flu then a chest infection which caused his temperature to go high causing seizures.
My father was at mine and had a small heart attack on my settee which scared me out of my wits so both Isaac and my dad were both in the hospital at the same time,my dad was admitted at four pm and I finally got home at two am the next morning and had a quick drink and very little sleep as usual and Isaac was taken by ambulance at nine am the same morning.
I have managed to get a few fun times in with the children a trip to wonderland before Isaac and robin had swine flu and last sunday a trip to bath so the boys could see their favourite rugby team ground,they loved it.
I now have a special needs buggy for Isaac as after seizures his side is weak causing mobility problems and after a seizure he is sleepy and he is getting quite heavy for me to carry and caused me to have a slipped disc and if they cant control seizures as gets older I really am going to struggle if i have to carry him.
a few pics of the kids at bath rugby club,robin got to kick a ball through the posts,it was really good to see as a couple of years ago he couldn’t even kick a ball.
The special mother
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The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“This one gets a daughter. The Patron saint will be Cecelia”
“This one gets twins. The Patron saint will be Matthew”
“This one gets a son. The Patron saint…..give her Gerard. He’s used to profanity”
Finally He passes a name to an angel and smiles. “Give her a disabled child”.
The angel is curious. “Why this one God? She’s so happy”
“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you”
God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness”
The angel gasps – “Selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ’spoken word’. She will never consider any ’step’ ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see…ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side”
“And what about her Patron saint?” asks the angel, his pen poised in mid air.
God smiles “A mirror will suffice”
Hectic household
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Isaac has been quite poorly and after a few bad seizures lost his swallow reflex and couldn’t eat he has to see the speach therapist and emergency feeding specialist if he cant swallow again.
I have finally got a decorated hall stairs and landing after my ceiling has been replaced and asbestos removed in true council style things didn’t go exactly smoothly.
Isaacs routine is as follows
Monday: pre-school
Tuesday: pre-school
wednesday: gross motor skills exercises as he is a bit weak on left after seizures
thursday: coffee morning/play date helps with social skills
Friday: speach therapy
weekend: family time with siblings,grandad and trying fit in all children want to do.
in between this I clean,do laundry iron clothes and meet up with my good mate jojo as I need bit of support sometimes and try and catch up with my lovely blog friends .Obviously if Isaac is having a bad week of seizures then the routine is out of the window.
Friday night is carrie-anns night out at dance with mates or sometimes she babysits for people as a bit of extra pocket money and tuesdays both carrie-ann and robin are out at church youth activities.
Saturday night is my night if I want to go out Isaac is in bed and I occasionaly go to jojos and we have a drink and girly chat which suits the elder ones as they watch tv together and eat goodies and enjoy the bonding time,they will really miss each other when carrie-ann goes to university.
carrie-ann may be offered a bursary paid university course if she gets the grades she needs and as she is st johns ambulance trained first aider and puts in for warden job at university then she could also have free accomodation.So she is praying on this as it would be a great help she is at the university for a few days on a taster type course then back to sixth form college friday doing forensic science which she is really enjoying.
Take care
Fraggle xx
fingers crossed
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I should be back online next week my surgery is on friday and my WBC is low so I have to avoid sick people.
The children are all fine and looking forward to RAF cosford air show on sunday.
I hope everyone is ok and I will catch up with everyone soon
Fraggle xx
My blog has been hijacked!
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well I was going to do a post about the weekend of wonderment we had and also have to do a post on the lovely One nice blog award I’d so kindly recieved from midwife muse,but alas It will be put on hold as Robin as more pressing matters in hand.
Robin wants to help raise money for help for charity help for heroes to help raise money for our brave troops after some have got hurt or need therapy to help live a full active life after giving their all for us,as Robin has had therapy being special needs and having a disability so he knows how much better his life has been after getting the help and support.
He is asking his teacher at school if he can do something to raise money for help for heroes,and he is going to use my blog as well,the idea is that for this week on this post of his on my blog that each person who comments on it a pound will be donated to help for heroes.
ps:obviously there will be a cut off point as myself and his sister are helping him honour his promise to pledge the money.
Tags: charity, children, disabilities, family, help, heroes, random, soldiers, troops
For whom the bell tolls!
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The last few days I have felt tired, weak dizzy like I’m going to faint and my eyes wont focus for a few minutes and the worst part, I keep hearing bells ringing like church bells peeling and nobody else can hear them. Oh and I feel cold even though everyone else is walking around half naked.
