Feeling sorry for myself. And DD2.

[CocoDeBearisCocoDeBear]

I took DDs1 and 2 to the park this afternoon.

DD2 is 10 months and has CP affecting her left side, diagnosed at 3 weeks old after seizures. I think some friends have assumed that she had a shaky start but is now "fine".

I bumped into a friend and she offered to look after the babies on the swings while DD1 and friend's son played on the slide.

I looked over to the swings at one stage and could see her trying to get DD2 to hold onto the swing with her left hand as well, but her arm had gone very tight and she wasn't getting very far. I could see the disconcerted, shocked look on my friend's face. She didn't say anything to me about it, but it is the first time I noticed someone else noticing IYKWIM.

It just makes me so sad. I want to cry.

It's all so unnecessary. My care was totally mismanaged by the NHS. And we have to suffer now for the rest of our lives.

I don't why I'm posting this, but I can't talk about it in RL.

please email me on [email protected]
sounds like you and I could talk loads but some stuff(legal) I can't talt about on the www. I can send you an invite for Timetorant.

You sent me one a while back in fact. I've never posted on there though, and not really got in the habit of looking at it. I'll dig out my details and introduce myself I guess.

DH won't really talk about it all, he just looks gutted and changes the subject. So we're all pretending she's "normal". He doesn't even do her physio. Say oh yes, I must learn to do her stretches, etc. But it's me who does it all, and it's never enough, is it, no matter how much you do it won't cure them.

I often feel like this.
I try to keep upbeat about things, but can't help looking back to my ds's birth. They induced me and let that go on for over 24 hours, and didn't listen to me, even though I kept telling them that ds was stuck in my hip bone, I could feel him there with every contraction, it was excruciating. Then I had to have cs, when they yanked him out with forceps, he had a cut on his forhead and down the right side of his face. He never stopped screaming for the first three months of his life and never fed properly for the first few weeks. His development has always been slow in lots of ways. I have often wondered.
Now, they won't even provide him with OT,PT and SALT. I am expected to be greatful for a portage worker. It makes me feel sad that I have just settled for whatever help I can get for my ds, when I know he needs more. He still can't walk steadily. Today he has had one tantrum after another.
It is as if no-one cares about my little boy.
Hugs to you.
Sorry for the ramble.
I never talk about it either.

Oh Coco and Deeja.

Can so relate to this.Your little ones sound gorgeous.

My worst recent moment was taking the dcs swimming.I had dd in the pool and she was doing her usual incoherent shreiking and was especially excited as there were some other little girls of about her age.Anyhow I smiled at the mums and said to dd "Ooh look some other little girls" to her,and I could see she was so happy to see them and tried to communicate and reach out to them and the mums moved across to the other side of the pool.It broke my heart.Poor dd.She has no friends to play with.

I am still trying to come to terms with the fact that dd will always be different,even though she is so special and just dd to me.

Hugs to you both.

The first year is hard I think. I couldn't bear to look at 'normal' kids and people avoided us. DD is now 3 and has severe quadraplegic CP. She has no purposeful movement and can't even hold her head up and will never talk or play. Thats the hardest thing, no hand function.
But it gets easier to bear. I still get cross at the stares though. DD is very voacl. Mouth wide open and making CP noises. She's unaware that this is makiing people look ut I hate it. But now I take her everywhere including toddlers and challnege whisperers. Still don't have any 'norm' friends though. Toddler mums make friends by whether your child is a good playmate. DD just isn't as she can't even touch a toy. I stioll go though, cos dd likes watching moving kids plus if no-one ever sees disabled children, how can they ever be accepted?

Hand function is so important, isn't it? More than legs, probably.

My DD does have normal function in the right hand, but very very little in the left. She's just started twitching her hand towards an object with her left hand, if you hold her right arm down fairly firmly. I should be pleased, as this is progress, but when I compare her with my friends' children... And I love her so much, to me she's perfect.

She's getting piedro boots and maybe even a splint soon. Breaks my heart. I know others have it worse... but so many have it better!

I'm still not sure what all these labels mean, severe, moderate, mild. I've been hoping for mild, but I think I'm being head-in-the-sand optimistic.

Thanks for your replies, I just feel so alone sometimes.

And to everyone who's posted, I know you are all going through tough times too.

Men always take longer to come to terms with it (well probably not always- but all the one's I know have ) The early years are the hardest, hang in there......

I wanted to say I really feel for you Coco.

I have two DSs and one at this stage has "Global Development Delay", which I am thinking is code for CP. He has hearing and vision problems, and isn't really interested in toys or moving.

I too am avoiding taking him to social events, it is so hard seeing all the other "normal" babies. I also can't help but think what DS1 was doing at a similar age. DS2 will be one of Monday so by this stage DS1 was doing so much....

(((Hugs))) to you, I really hope it gets easier for you...

I suppose I'm feeling sad because of the time of year, too. This time last year I was about 36 weeks pregnant and looking forward to the birth (well, you know what I mean!).

I feel like I was just a silly child back then, even though I was in my 30s, I didn't know what life is really like.

mm22bys, are you having a birthday party for DS2?

Coco, I had that when dd approached 1. I kept thinking, this time last year I was excited about my baby being born and she was 'normal'.

Then she was born brain damaged, spent 36 weeks in hospital and we endured hideous steroid treatment for her epielpsy plus hospital caught infections.

Its easier now although I think Xmas brings on pangs. DD can't open anything or play with toys. I can't think of anything a blind quadraplegic could play with so wont get her anything.
I'm a different person to how I was before she was born and we were shuffled into this weird 'alternate' world.

Was she born around Christmas time? Probably I should go on ttr for proper chats.

Also does she like music? Maybe CDs?

I read some of your posts about your DD's recent treatment. Poor thing. It must be really hard on you as a family, too.

Life is harsh, in many ways.

You're right, nmc, I often think "this time last year she was growing happily, and her brain was completely fine". And now... it's not.

She will "never know any different", which is what well-meaning people keep telling me. But I know she SHOULD have been someone else, or at the very least she SHOULD have a life ahead of her that is full of opportunities that she won't now have, no matter how well she "turns out".

Coco - its not surprising you are finding things tough. It is tough at times. And this is all still really so new for you.

Did you email me? I didn't get anything. I just wanted to say that if you wanted to meet up and talk I would be more than happy to do that. I think it is important sometimes to just offload to someone who does understand, who isn't going to placate you or anything. Just know. I remember the first time I got together with a group of mum's with SN kids. We were all just so desperate to talk about it all.

Anyway, there is absolutely no problem if you don't want to. But the offer is there genuinely.

am totally with you all, feeling it badly too at the mo.

wrinklytum I can so identify with your swimming story - I also had the experience of another mum moving her child away from mine in the pool, as if it were "catching". Must admit I absolutely screamed my head of her , called her ignorant and judgemental, then swore at her when no-one else could hear (I find you lose the upper hand if you start swearing in public!). I would like to invite your children to a playdate with my 2 (DD is 6, DS is 4 and ASD)I live in Kingston Surrey if you are anywhere nearby? The most hurtful thing is playdates and stuff like that I find - my DS invited about 20 people to his 3rd birthday party and only ever got one invite back. It is heart-breaking!

And Cocodebearis, and all posting on this strand, you are all invited to a playdate with my two DC if you live anywhere near Kingston, Surrey. Big hugs

Mcready mum,that is lovely of you Sadly I live oop north and have no transport,and dp is in hospital currently so I am somewhat housebound.It is just lovely that Mn exists as reading the posts on here makes you feel like part of a community.Coc,I hope you are feeling a little better today.Love to you all and your dcs.xx