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.

 

 

 

 

 

 

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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


Being a bit of a bad blog buddy

September 16, 2009
6 Comments

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.


my mind wonders and sometimes I loose it completely!

January 30, 2009
6 Comments

Today It has been all too much for me,the dr hadn’t sorted out the necessary paperwork properly or passed the information on to the health visitor,she thought oh a nice easy two year check up,she weighed him he has put his weight back on he had lost due to the medication a side effect is putting weight on,his height is average for a two year old.
She didn’t do any more tests as he has been refered to the child development centre as since he started having his seizures he has lost some previous skills that he had and is showing some autistic traits,which is all pointing towards lennox gastraux syndrome.The health visitor was oblivious to this as none of the drs in the surgery had informed her.various questions were asked does he sleep well,errm all depends if he has a seizure or two in the day then he sleeps nearly all day not so good at night if he has a night seizure or two then he has a broken nights sleep but has a lay in later.Oh I bet you don’t get much sleep *me* no as if he has a seizure I lay awake watching him and checking his breathing if he doesn’t have one I am listening out for him incase he does so don’t get a proper sleep,she said you need some support,so she has put him in a referal so he is in the system.Whilst this was being not sorted but I had to explain again medical history my phone went for the tenth time off Isaacs daddy as I’d not replied what was wrong and why I was upset via texts.I had told him I was too upset to talk to him at the moment which I think made him more determined to speak to me.
After a really horrible couple of days I really was emotional and trying my best to hold things together and thought talking to isaacs daddy wouldn’t do me any good as I’d take things the wrong way and he’d upset me.How wrong I was! he left me a voice mail after about the fifteenth time of phoning me and said I’ve tried contacting you all day as you know this will be my last today as can’t call again so I’ll phone tommorow.
I sat down with the children in the lounge and was chilling as best I could then my phone rang I didn’t recognise the number so I answered in case it was important,it was Isaacs daddy off his works mobile,he was quite frustrated as I’d not answered his phone calls and was worried about me and Isaac we had a chat about Isaacs medication and he agreed that if needed that the riskier option was what we should do for Isaac It was nice to get some input about isaac and a bit of support,he then asked me if I’d got Isaacs bed alarm I said no and he said he would buy one online and have it sent to my house so I could get a bit of sleep and I said because of his seizures in the supermarket and due to the fact that Isaac has lost a few skills since starting seizures He has a place once a week at pre school and his daddy said to help Isaac get his skills back he will pay for an extra session each week and he will try and phone me more to see how I am and how Isaac is doing.
I had a mild asthma attack today too much stress hopefuly things will get better.


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.


I used to have a handle on life then it broke.

January 22, 2009
12 Comments

Expecting the world to treat you fairly because you are a good person is like expecting a bull not to attack you because you are a vegetarian.
So to explain that thought,I was adviced by various people to ask for help with Isaac even if Just a few hours break as 24-7 care of a disabled or sick child takes its toll.I’m entitled to help and support,so I’ve swallowed my pride and fought against my independant I’ll manage streak and asked for a bit of support and help.I’ve been met with a resounding no..ugh
So I accept that but asked why,apparentley even though I’m a single mom I do amazing children,well fed clean all physical and emotional needs met and I don’t meet critiria.In a nut shell if I hurt or neglected my kids then I’d be able to have help support and extra financial help.Apparentle I have got the moral high ground and my children are not disadvantaged by their measuring stick,ok I cant afford holidays and latest x box etc but they have love and support more than alot of children and they know they are loved.

If the children played up and got asbos then they could go on an expenses paid trip to see the x factor,so How Do I explain to my children this theory,that as they are good can’t go on the trip!

So apparentley if I hurt my children or neglect them and I’ll get help and support,but that is never ever going to be an option.As I have told my children people of character do the right thing,not because they think it will change the world but because they refuse to be changed by the world.I’m hoping they will remember this when I tell them later.