Meeeeeeeeeee's Blog

my boys

fraggle — Sun, 06 Nov 2011 18:33:53 +0000

My boys are doing so amazingly well,Robin may be on Jeremy Kyle this month as an inspirational child and the microcephaly awareness day was amazing such support shown.

My youngest still has problems walking his boots from the orthopedic at the hospital help a little the nightly physio on his feet and ankles are keeping his tendons supple his latest seizure meds which have been upped a little are fingers crossed working a little better so less seizures.The autistiuc part of him is a work in progress he is so bright,his nickname is Sheldon aka shelly bean (if you have seem big bang theory Sheldon character is so like him) the only issue that really seems to concern him at the moment and as a child who keeps on asking as once its on his mind he wont stop asking until he gets a suitable answer,it is at the moment grandad can I see him? my dad passed away after his battle with cancer and he comprehends in a childlike way he can’t see grandad as he is in heaven.He is aware he has a mom and a dad who both have parents so he has another grandad a paternal one.

conversation goes something like this…

I..Can I see grandad.

Myself..Grandad is in heaven you remember.

I..I know,I mean my dads one.

Myself..hmm I will have to talk to them or your dad about it.

I..ok phone them,they can come to my house.

Myself..ok son I will see what I can do.

This conversation then was continued and brought up regularly and small few day intervals.

I..send my picture to grandad

Myself..err which grandad?

I..the one who isnt dead,whats his name? does he look like daddy or me? does he have a moustache like your dad?

(after lots of questions about him I couldnt answer..)

Myself..ok I will write to daddy and ask him to answer your questions.

I..ok you can phone him at work.

myself..he might be busy.

I..he might not be.

After a couple of months of these questions and him getting frustrated by my lack of being able to answer his questions and his father ignoring his sons plea for his help filling in the gaps (via my phone call and letter explaining his son requires his help support or input on questions he asked) I decided to go to the organ grinder not the monkey.I wrote to the grandparents saying basically the questions their grandson is asking and if they would fill in the blanks and Offered if they wish to see him as never have or contacted to ask the offer still stands.

His dad was phoned by a Third party to say as he was not being a help towards his son I had gone via his parents and wrote to them,he was not happy.But desperate times call for desperate measures.I recieved a letter a few days later stating until the night before they didn’t know we existed as their son knowing the letter was coming dropped the bomb shell.Ugh I felt bad as 1: what if they are really old shock is no good. 2:why would a father be ashamed of a child not wanting to share him with family.

I am still non the wiser on any details for my sons questions as his grandmother said let the shock sink in and will decide what they want at not to build on expectations also had my motives for bringing this to their attention questioned?

ok yes shock I agree but four months on no decision! Yes decided what they want,but shouldn’t it be as a young child what the child needs not a whats going to effect them as what harm is sending a young boy a christmas card or a birthday card or a trip for an hours drive in a car to see sports day nativity play.

questioning my motives..Shouldn’t they question how come their son hid pregnancy and birth and childs life from them,how didn’t they notice any character mood swings I know if my children are lying upset worried etc Why their son felt scared guilty or ashamed to talk to them.yes maybe their christian attitude to having a child out of wedlock was a factor,but surely rejecting a child is a greater sin.

I’m back

fraggle — Mon, 15 Aug 2011 16:23:12 +0000

I decided I would revisit my blog After a long break,enforced by my dads battle with cancer and his sad passing way.
I shall try to get back to my normal positive self.on bank holiday weekend I have opened up my garden for a charity event which will hopefully raise awareness for microcephaly.
Which I am actively supporting. my elder son has been shortlisted to be a torchbearer at the Olympics.
Hopefully I will pop around and catch up with my blog buddies soon.
Hope everyone is well In blogland

Being a bit of a bad blog buddy

fraggle — Wed, 16 Sep 2009 18:03:05 +0000

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

fraggle — Fri, 21 Aug 2009 20:22:23 +0000

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.

fun and family

fraggle — Mon, 17 Aug 2009 08:38:14 +0000

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

fraggle — Thu, 30 Jul 2009 18:10:48 +0000

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

fraggle — Fri, 10 Jul 2009 15:41:43 +0000

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”

first love

fraggle — Wed, 08 Jul 2009 08:47:00 +0000

Isaac and his girlfriend EJ

Hectic household

fraggle — Tue, 30 Jun 2009 20:05:38 +0000

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

fraggle — Wed, 10 Jun 2009 09:17:47 +0000

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