Meeeeeeeeeee's Blog

my boys

November 6, 2011
1 Comment

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

August 15, 2011
1 Comment

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


microcephaly awareness day

August 21, 2009
8 Comments

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.


The special mother

July 10, 2009
3 Comments

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”


full of hope

March 17, 2009
10 Comments

After my earlier post today via my phone,things are picking up.
Isaac had lost a little weight but nothing to cause concern and his medicine isn’t fully controlling his epilepsy but seems to be working as well as expected so We don’t have to take the riskier option.
whilst in with the paediatric specialist he informed me he had recieved the disability forms and had to fill in five questions and his secretary would type up a letter and send it off straightaway.The questions were how many seizures does Issac have a day/ night and what type,he put up to five a day and two a night gran mals,full body shakes/jerks.Can they be predicted ? he put no,Is there a warning sign or aura before? again he put no,as not all types do and how can a two year old tell you if he did.Does he need more care supervision than a normal two year old and at risk of getting hurt because of disability? he put yes needs to be kept eye on.
The one he needed information on and was waiting to ask me was when was Isaacs last seizure,which was on the bus this morning .
He has put him down with epilepsy and autistic traits as he is too young to get a diagnosis of autism until he is nearer to four.
The doctor thought the questions on the forms were as silly as I did.
I have to wait for the beaurocrats to make a decision what help if any they decide to give him,should take another couple of weeks.
oh and the regression thing maybe down to trauma of the hospitals and tests and he should make a full recovery or sometimes memory is effected with epilepsy and medication,so to keep on practicing and refreshing his memory should help.
Isaac has had or rather got a busy week,pre-school yesterday and he came out with a sticker saying I knew the day of the week! (which amazed me as I didn’t even know he knew about time concept) he had a trip to the hospital today and is on his trip to the snow dome on friday, and he has a lovely new car to have a ride in that was a bargain £30 off ebay brand new battery operated one which I couldn’t even wire up so had to ask a friend from church to do which he did last night for me,Isaac decided the box made a lovely tractor,then robin decided it made a lovely tardis and Isaac reclaimed it this time as an aeroplane.
I think later on this week I’ll do a post of a week in pictures,I may even put the one of robin dressed as a girl for comic relief at school he raised £50 in sponsorship money only two boys were brave enough to turn up as girls one boy a yr 11 boy went the whole way and wore thongs and stockings.


Coping through the chaos!

February 22, 2009
4 Comments

So I’ve filled in the forms for Isaacs disability and it wasn’t an easy task as I had to put into words how his epilepsy effects him and how he feels prior to a turn and during and after.
Putting into words how a disability or illness effects someone is hard for an adult to do but for an infant who has recentley turned two is practicaly impossible,as the limited vocabulary of a child so small is not exactly going to give the people who make decisions much insight.
some of the questions were so hard to answer ie,how much help does he need a day? how many times ?how many minutes? what would he do if he didn’t have the disabilities he has? how many yards can he walk without discomfort or problems and how long does it take him?
All the questions apart from medication and ones for the doctor were really awkward as some days are good some days are bad,if he has had a bad day or night and had a few seizures in a row then his left side is weak and he aches causing discomfort when he walks or I carry him.
It’s hard to predict when he will have a seizure as the atonic type are rarer and don’t respond to medication as well as the other type myclonic and complex partial seizures he has ,I think he may be aware of an aura prior to the complex partial ones as he has started to stop what hes doing and lay on the floor prior to a seizure.
Some questions were also hard as he is waiting to see another specialist on march the 4th about the regression he is suffering since his seizures and what therapy he needs.
I’ve filled it in as best as I can and added a note to make them aware of any other details and information that was not on the form.
Also since filling in the forms and sending them off they have doubled his medication,so the information is slightly out of date.
It’s not very nice filling in forms focusing on what your child can do or i’llness was really upsetting.


support and solutions

January 27, 2009
6 Comments

I’ve sorted out the problem of Isaac having seizures in the supermarket,I’ve got him a place at little springs academy on a monday afternoon It is £7 for the two and half hour session.That will give me time to get to the supermarket do a quick shop and get home and put the shopping away and grab a quick drink before I pick him up.
I took him yesterday to try and get used to it,he had a peg with his name on his has a picture of a truck on for his coat and pumpbag or bag,the majority of the bags were the same thomas the tank engine or iggle piggle and plain red pump bags as that is the only colour the local uniform shop had.It was a mass of red pump bags and as it is confusing I have got him for next week a yellow pump bag with support our troops on,his favourite colour is yellow.
He went in and I sat nearby in the classroom the register was called and the children have a photo with their name on it and it is put on the wall,then they were asked what day it was and what was the weather like and the children put pictures of the sun and clouds on a wall chart,then they can choose what to play or what activity to do.
Isaac was asked by one of the children his name he said Johnny rugby.Bless him just before snack time he fell asleep on the teachers lap so a make shift bed was made out off large cushions and I then went and ran to the supermarket and got a few bits waiting for the phone to ring all the while I was there.
I rushed back and was waiting outside at five minutes past three,they finish at a quater past.He came out covered in red glitter and sand in his ears and I carried him home no soon as I went through the door he went towards the kitchen pointed to the fridge and he had a sandwich.

The doctor has rang me and he wants to discuss something with me regarding Isaac so I have to go on friday afternoon,I have an appointment with the health visitor on friday morning for his two year health check and I’m going to ask her to help me get the support Isaac needs,he is currently engrosed in watching Justin fletcher in something special I’m trying to get him tickets to see him live in the cee beebies show as he gets really excited when he is on tv he can also do the sign language *makaton* that justin does.

We have this Joke when robin is not doing as he is told carrie-ann says we will put him on ebay and he always replies to carrie-ann I’d get lots of bidders you’d make 99p if We put you on.Robin was not eating his tea last night and was playing with his food and I asked him to stop playing and eat it.Isaac turned round and pointed his little finger at him and said you beebay.He couldn’t eat his food for laughing.