Quote: Took DD4 to dance class this morning and we met a little 2 year old lad who has CP (same disability as me), through being premature (same reason as me). I've never met anyone else who had it, even if he is only 2, so I spent the morning playing with him, LOL.
Jo - I can't believe it. You honestly never met anyone else with CP???? Gosh, it's not like it's that rare. Your mother never made an effort to introduce you to functioning adults with CP when you were a kid? You never belonged to any kind of advocacy group for people with CP??? Never went to a convention?
Other people with CP have had to deal with many of the problems you just outlined in your last few posts. Don't reinvent the wheel - find out how THEY solved their problems. You need to get connected to that community.
I have a niece with spinal muscular atrophy, the patient organization for that in the uS has been a fabulous source of support and information. Ellie
I knew a girl in school who had severe arthritis and was in a wheelchair because of it. We were friends from when I was 8 until I was 18 and then I had DD1 and she doesn't like babies so we stopped being friends.
Then there is Andy and BIL (and previously also FIL when he was alive), who had HMSN type 1a, but they are literally the only disabled people I've ever met - no one with CP except me.
My primary (I think you call it elementry?) school had only 70 students in it, of which only me and BIL were disabled students there, and at high school there were 500 students - with only me and the girl with arthritis having a disability.
No, my mother isn't the kind of woman who would ever join me to any advocacy groups because she's prejudiced and doesn't think I deserve the same rights to normal life as others anyway. She told me that me and Andy should have been 'sterilized at birth', and that 'disabled people shouldn't have children.'
Even on my wedding day, she said to me that she was so happy because she thought that with me being disabled, no one would ever want me. Honestly, those were her exact words, ON MY WEDDING DAY!!!
I have never met another adult with it, no. Although when I was 19 I did do a temp job in an office (answering the phone and such) for Scope, which is the charity for people with CP. All the other office workers were able-bodied, though. I have phoned their helpline once when I had housing problems and I got legal advice from the Disabled Parents Network when I was going through court, but that is the only time I have ever thought about it.
Most of the time I don't think of the CP unless something happens because of it or one of my kids asks me about it (they question me quite a lot on the subject, even DD4, who is only 3).
I've just been registered with the driving scheme which means I can hire a car for 40p a mile (about 20c, I think). They do evenings as long as I give 3 days notice and can take me anywhere I want in the whole of the UK.
They do social events too (you have to be disabled, sick or elderly to qualify) so I reckon I'll sign up for those.
Now my only problem is babysitting. I have to find someone who will agree to look after DD4 for a couple of nights a month. Typically the things I have looked at are on the week days when Andy doesn't have DD4.
I need to find myself a new family, urgently. Then I could ask 'honoury grandma' for babysitting help!
You know how sometimes babies are adopted? Well, I wish that adults could be adopted too, like if their family doesn't want them like mine, they could just be adopted by another family.
I've not ever posted to you before, but I'm one of your lurkers. Your posts over the past couple days have disturbed me, and I've gone home trying to mull them all over. It's no reflection of you, but how I feel...
I'm the mother to an 8-year old disabled girl. And while I'm thrilled to be blessed by having her, I have definitely met parents who run the gamut of other, less positive feelings.
For the life of me, I can't imagine not ever meeting someone else just like you. It just blows me away. D8 has not only befriended other differently abled persons, she's met a slew of kids who share her Dx. And on top of that, her dad and I have her skiing with her peers at the National Sports Center for the Disabled here in Colorado.
Then I started to think how this could be possible... for a 28 year old woman to never have the opportunity to meet people just like her. And it all goes back to your mom and how she feels. My guess is she feels a whole lot of guilt for your outcome, and that's why she's been able to keep you isolated from the rest of the world. After all, what would others think of her?
I say this sort of tongue-in-cheek, as my grandmother was of British descent (her grandparents emigrated) and she was of the similar mindset. She was a lovely person who was so caught up in how others might perceive her.
Anyway, I didn't post to you to try and figure out why your mother doesn't see you for who you are through your physical limitations. I DO call you folks differently abled. You do what you can to compensate for what this life denies you, and I am humbled and amazed to see the spirit really shine through in you.
I tell people that my life truly began the day D8 was born, and I mean every word of it. Because of her, I've changed what was in my heart. I've met people who love to work with folks who think differently--who I'd have never met otherwise. I've learned how to appreciate all the talents that God gives each one of us. And I've learned to be thankful every damn day for being blessed by being her mom. She's the most amazing person I've ever known. And I feel the same way about her friends--especially those in wheelchairs. Because THEY can see straight to the soul of a person where those of us who are considered "typical" are so caught up in the human trappings in front of us. YOU ARE BLESSED! God chose YOU to teach others how to look past what they see.
I happen to work 2 streets west of our Denver chapter of the Cerebral Palsy Foundation. There is a very active chapter in London:
Cerebral Palsy Association of UK 6 Market Road London, UK N7 9PW Phone: 0171 619 7100
Damn it, Jo, why couldn't you live here? Go out and adopt some surrogate parents. I did! And you know something wildly wonderful? I met them at another church across town. N (my adopted mom) spoke to me as she saw D8 playing in the baptismal font. She said wistfully, "Let her be, because God blessed her with her gifts. I should know, because I had a son just like her."
Jo, her son had CP and was the true light in the lives of many. His life became even more important after his death... he was murdered by his caretaker, who decided that he hated his job. Everything I've learned about forgiveness has been learned through them.
His life was not in vain. She's been able to transform the gifts he possessed in life and death to change things for other disabled people. Particularly those who have CP.
I've met and befriended many more people who feel the way I do and she does than those who feel like your mum. WE are the rule, not the exception... and I encourage you to put yourself out there and start meeting people who are awed by your tremendous accomplishments.
You're a gifted person, Jo. A real blessing in life. So market yourself this way, and I can promise you that you'll get everything you want, need and deserve... and then some. Because you are truly worthy of being loved.
Screw Andy. It's time for Jo.
And I hope you receive my message with its true intention.
God bless!
Betsey
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
Thanks for the address, although the phone number will be wrong as London numbers were changed to 020 instead of 0171, about 3 or 4 years ago.
That's awful about your friend's son being murdered. I hope his killer is locked up where he belongs, ugh. It gives me the shivers.
I know part of what my mother feels (from what her husband told me 2 years ago). In essence, she saved my life because they were living in Greece at the time (my sister was born there) and she got this premonition that something would go wrong with me, so when she was 5 and a bit months pregnant with me, she moved to the UK with my dad and stayed in this flat that he had for when he was working there. I was born about a week or two later, at only 24 weeks gestation, and since Greek hospitals weren't as good (so she said), I probably would have died had I not been born in the UK. I spent the first 3 months of my life in a London Hospital.
Despite the fact that I wouldn't be here if it weren't for her quick thinking, she blamed herself for birthing me early (so her husband said to me) and I stopped breathing several times, even after she brought me home, so she just became paranoid around me.
I was not allowed out as a teenager. She let me to the village youth club (sleepy country village) and to the girl who had arthritis, and I was allowed to eat my dinner at Andy's mum's house once a week, but no parties, no shopping, no going out with other friends on my own, I wasn't allowed to go to the dr on my own - even at 15, she would insist on being in the room with me. Dr would ask me a question, she'd answer.
I wasn't allowed to wash dishes ('you might break them'), tried to iron my jeans once and she went mad ('what on earth are you doing? You'll burn yourself').
Then of course she told me to choose between her and Andy and when I chose him she threw me out and it was a relief, an absolute relief, because I felt as if I had been in prison for years and moving in with him was freedom.
I didn't even know how to peel a potato when I moved in. He taught me all the household chores I know.
She carried on suffocating me afterwards, but through my children instead of me directly. She told me once that she still sees me as that tiny baby fighting for my life, but I said I'm not that baby anymore. You have to let go of that image. And well, after what she did when I was going through court, I just decided I've had enough of her and her prejudices and her fear.
Screw Andy?? I did, several million times, that's what got me in this awful mess, LOL
I have an 8 year old DD too. What's up with your DD (If that's not too personal?).
There is a question mark over my 8 year DD's health. She was born normally after a 5 hour labour, weighed 8lbs, 5ozs and fed well etc, was 11 days overdue.
She was a bit slow at developing, though. For instance, she never sat up until 10 months old, never crawled (just rolled everywhere), didn't walk till nearly 16 months and didn't toilet train till about four. She was never trained at night, even now at 8 years of age, she still wets herself every night.
Her concentration levels are poor. If you give her an instruction, you usually have to say it twice and she seems to have no awareness of danger or her surroundings etc, i.e, she'll run in front of a car without thinking, still does this now, or she'll walk into something because she wasn't looking where she was going.
Her balance is poor and when she was little she would fall over all the time (more than normal). We seemed to spend our life in ER. She broke one arm one week, and then 6 weeks after that, broke the other arm.
At first I thought it was HMSN, like her dad, but she had all the blood tests and the electrical tests (agony to watch ) which say she hasn't got that, and she hasn't degenerated like you would expect if she had got it.
Then they told us they thought it might be a mild form of spina bifida, and I was with her when they sedated her for an MRI but her brain and spinal scans showed she was normal. Spine is normal, there is no brain damage.
In the end, they just told me she was 'clumsy' and that she'd 'grow out of it' - and maybe, I don't know, this whole M break up and not having me has put her behind, too. She was still wetting when visiting me, and still when I was at Andy's house. It does worry me, though, to think my child is ill but not know with what.
Am going to write an update but not really about Andy, just my life in general.
Publisher told me that my vaccination book is now at the press so that'll be done in a few weeks, that's good news. I've made my book website 'Christmasy' for the Christmas sales and made a few large orders to osteopathy clinics. I am at the moment writing an article called 'The Diary of An Egg Donor' to try and publicise egg donation and to see if I can earn �500 to cover my kids Christmas presents and the food.
Got up this morning, got my period which shocked me as it's only been 10 days since egg retrival and they told me it would make me late. Instead I am early, but pleased because it means I won't have one on my weekend to London.
My girls walked in at around 12.30, DD1 was wearing this waistcoat I bought her and promptly pointed that out to me
All of them walked in and made themselves at home, and Andy walked in too. I moved and sat at my computer table away from him. I complimented DD2 on this blue hat she was wearing, and she said yeah, same colour as those blue knickers you've got that you let DD1 borrow (they had no clothes when they were round here).
Andy chipped in, 'yeah, I've still got them and that pink belt of yours and this orange pair of leggin's.' I asked him if he would return them to me. He said yes.
Then he asked how I was after the egg retrival. I was a little niggled that he couldn't ask that right after my surgery when I was in his home, but I bit my tongue and told him that I had pain for 4 days, but was now fine. I showed him the card from the IVF clinic.
The kids started talking about Christmas films so I showed them which new ones I'd bought for us to watch at Christmas (unopened so I don't watch them before then) and Andy asked if I was buying anymore.
Andy said, 'look, this is silly. This house is too small; why don't you come to mine for Christmas instead? You can still cook the dinner, just do it at mine instead of here, then we can eat at a table instead of off the sofa.'
I asked him what I am supposed to do with the frozen food. He said to store it at his. I said, 'no way, you'll eat it before Christmas and waste my money.'
He said he wouldn't, so I said okay. He said come over Christmas Eve. I said okay. I hope it isn't as bad as the last time I went over.
I said I'd wrap the kids presents this year. He said okay. I haven't wrapped their presents since they were 4 and 5!
I asked him to babysit from the 26th as I am going to London next day. He agreed.
I got them all some lunch and then they left and said see you on Monday.
Sounds like your mom didn't believe in empowering you and encourage you to be independent? I know, I know, the world is a different place nowadays. Mr. Wonderful and I do everything we possibly can to encourage D8 to be as independent as possible.
And there are many similar symptoms between your D8 and mine. Though mine is mute. She has Angelman Syndrome.
My hat goes off to you for forging a life of your own. That must have been difficult.
Yes, the murderer is in jail for life. Sadly, he's unrepentant and feels his sentence is unfair. He can't understand why quitting his job might have been a viable option? At any rate, my adopted parents are 2 of the finest role models I know. They know what my life is like, and I've found a safe place to go without worrying if D8 is going to piss them off. It's just not possible.
It was divine intervention that I met them... the day before Mr. Wonderful dropped the bomb on me. I've thanked God for the stroke of genius because it's been a real blessing to have surrogate parents close by (mine live in DC, about 2000 miles away).
If I can do it, so can you. I hope you find some support out there. I know it's possible, but you have to put yourself out there and let others know what you want. I do believe that you're going to get it.
LOL, if D8 tries to peel a potato we're doomed! I think I'll leave it up to you...
Have a great weekend,
Betsey
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
Well my mother used to say she was encouraging me to be independent but in reality she just liked controlling me, like Andy but a female version. And she had as much power over me because she gave birth to me. If I ever tried to assert myself, she would pull the 'I sacrificed my life for you' card.
To be honest, no, it wasn't difficult making a life, it was more difficult living with her and sometimes putting up with attitudes from able-bodied people. Most of the time, me and Andy would just go home and laugh about them
Like, one time after we'd just moved in together, we went to check out the local supermarket together and we were just standing there weighing some potatoes when this couple rushed up to us and the woman was going 'Oh, congratulations, you're so brave, how brave you are!' and her poor husband was shuffling around, looking really embarrassed and studying the pattern on the floor, then she practically LUNGED at us to give us a hug and he had to practically pull her off us.
When they left, me and Andy just looked at each other and burst out laughing. I said to him, 'Why are we brave? I was only weighing potatoes, not going over the front line of the trenches!'
I also generally found that social services make matters worse so I don't have anything to do with them now, I just manage my own life. It's mild, so many people don't realise. The guy who came round to read the gas metre, thought I had fallen over and sprained my ankle! I just smiled at him and said no, this is me, permanently.
Some people are so funny.
I've not heard of Angelman Syndrome, I'll have to look that up.
Just looked it up. My DD 8 years doesn't have that. She has never had a seizure and her face looks normal, and academically, with her schooling, even though she's home educated, she is up to the level that is usual for 8 year old's (according to the Education Authority who visit her once a term), and I have the opposite problem with her that I can't ever get her to stop talking. For instance, if we're reading a book, she will comment on the story so much that I can't finish the paragraph or if we are watching a film, she will talk all the way through it until we are her sisters are begging her to be quiet, LOL.
When she used to be in kindergarten, her balance was really bad so she'd be stumbling when they did ring dancing and the teachers, in fact, said they wouldn't have her in the class so Andy got furious and went there and accused them of discrimination so they re-instated her.
Then if it was story time and she wanted to play, she'd be off playing even if the teachers said sit still. She paid no attention to their instructions, normally, unless it was something she wanted to do herself.
But after 2 years of tests, the dr's just say she's normal. They suggested that maybe since kids learn by imitation, that she was 'copying' the way me and her father walk, and that she would grow out of it when she realises we aren't, 'normal' (for want of a better word). I'm not terribly convinced, though, as she still can't run.
My friends have all said that she's been stuck in this D drama since she was 4 and maybe it's because she was traumatised (she took mine and Andy's problems worse than the other kids and threatened to kill herself if we didn't get back together, banged her head on the wall to injure herself etc etc - that's why Andy then put her in therapy with a child psychologist).
My friends reckon as the sitch eases a bit and time passes, she will probably stop wetting, and my best friend has a son who wasn't dry at night till he was 10 and he's normal, so she told me to wait a couple of years before we get anymore tests done. The dr's said the same.
Andy wants to take her to a herbalist and see if there are any herbal remedies that will help, that's why he was asking me about her babyhood a few weeks ago.
Well, best wishes to you and your D. Gotta go as I'm supposed to be writing the Christmas newsletter.
My life is worse than a soap opera. I got a call at midnight - I didn't answer because I was unplugging the iron.
Found message from Andy, asking me to call him. I called him, wondering why on earth he is calling me at midnight. He apologised for getting me up. I said you didn't. What is it?
He said he was in court tomorrow so couldn't bring DD4 back in time for her nursery school and would come back in the afternoon instead. I asked why he was in court, he said it wasn't for him, but a friend and then mentioned 2 friends I know he has whom I shall refer to as V and J.
V is another female friend of his, but not a OW, they are just friends and I have known all along and don't mind this lady. She used to take her kids to the same school my kids went to, one of her son's is autistic and the other is DD1's best friend. J is her husband, who Andy knows vaguely.
Anyway, J and V have been going through a divorce for several months now, instigated by V (the woman) and Andy tried to help them both and then when they put the house on the market, he helped V apply for a new house which she subsequently got in August.
Now suddenly V says that J has sexually abused their 2 sons AND she made an allegation that he molested my DD3 whilst she was visiting the house with Andy. Andy was there at the time and says nothing happened. J was watching TV and DD3 climbed onto his knee, that was all.
I believe Andy on this one. If anything had happened, Andy would have hit J and called the police. I have seen my DD3 quite a few times, regularly lately, and she is always happy and confident, which she wouldn't be if anyone molested her.
As well that this, the eldest son denies that any abuse took place, and V is still living in the marital home with J even though she has had her own house since August. Andy said to me on the phone 'Jo, if that was you and I was abusing the kids, what would you do?' I said 'Easy, I'd take them and run for the hills.' He said 'exactly, that's what anyone would do, but she's still with him, and keeping the boys around him while her house sits empty.'
I asked him if maybe J was terrorizing her. He said no because they go swimming together and shopping and they hang out as if they were still married.
I said Andy, you really don't know what's going on here; you're in over your head. We have enough of our own marital problems, do you really want to get involved with this?'
He said that he liked V, she had been a good friend to him for 2 years, but he also knew that J was innocent so he had been asked by the court to make a character witness statement and also to say what occured on the day when my DD3 sat on J's knee.
I said to him that I would request that our children are kept out of anymore legal battles as they have already been in too many. He said they weren't aware of anything. He said it wasn't a sexual abuse trial, it was a custody and contact trial and as V was mentioning our DD3 in her court statement and insinuating that J had molested her, he had to be there to set the record straight.
He assured me nothing happened to DD3, 'She just climbed onto his knee when he was watching TV, I was in the room chatting to both of them.'
I believe him. He might treat me bad but he does love the kids and if anything had happened, he'd have blacked the other guy's eyes.
I told him I thought maybe it was a revenge thing, as allegations get made when there is a custody battle. He said he knew, and that is why he wanted to stand up for J.
I told him he might lose V's friendship. He said he knew, but the court had requested him to be there so he was caught in the middle.
He talked about how he hated the court and it would be the same court room we were in and he didn't want to go in there again.
I said, 'I'm not going to wish you luck as I'm not sure how wise it is getting up to your neck in this dispute, but I will say I'm thinking of you and you can take your moral support from me as I know being in that building and speaking up when she is your friend, will be hard.'
He said thank you.
Then I said I was tired and was going to bed so we ended the convo.
I really am going to bed now as it's 1.15am! God, another thing to worry about.
Betsey 
) which say she hasn't got that, and she hasn't degenerated like you would expect if she had got it.