Any Cerebral Palsy parents out there :)

[essie0828]

So this is an off topic rant. Kinda feel lame for posting it but I need an outlet. I am so fed up with DH right now. Like, close to getting a divorce fed up. I'm stretched with DD's care and trying to manage him, worn thin if you know what I mean. He's very irresponsible and that's definitely nothing new to me. Before Hayley I would just help clean up his mistakes. He has ADD but he won't see a doctor. His attention problems are pretty bad, he can easily get distracted and forget to watch DD. That's not at all good with a semi mobile toddler. She can quickly get into things now. He never keeps track of his spending. I don't mind to do the accounting but he buys things and forgets to tell me and that makes keeping finances hard. He can't/dont/won't listen to my pleas for him to do things differently. It's almost too much for me. I've been pretty mean to him lately and seeking revenge, that's not a good way to be. I know I shouldn't be petty but i feel really let down, I'm just to angry to talk about it with him anymore. I've been trying to wait out this pissed off attitude I've been having but it's been days and I'm just numb. Ugh. Frustrated to the max.

 

[lilesMom]

Aw hugs honey.
I'm the adult in my house too For some strange reason guys get away with being a big selfish kid,
While we hve to do the responsible stuff.
I've tried showing my oh Simons physio but he gets cross and won't listen.
Sorry trying to get him to face the truth
When we were told it was cp,
When we got out of the team meeting he says,
He doesn't hve cp that was what they said to get usmore services :-D
Ostrich :-D
Sorry not much help to rant too
But wanted u to know u aren't alone in ur frustration xxx
Hugs xxx

 

[lilesMom]

Ha ha, I'd ref cry too.
We spend so much timeprotecting um, it's upsetting when something happens
However small and unintended xxx
Seizures still gone thank God
Hope they stay away now :-D

 

[essie0828]

That's wonderful news about the seizures! I'm really happy to hear that.

Ugh. Men! Wtf is up with them? Has your man accepted Simons' diagnosis yet? DH just kinda does his thing and depends on me to sort out all the medical stuff. Honestly though he admitted he couldn't do it up front. Our deal was he takes over finances until kiddo is self reliant enough to go to school. And that could take a while. We talked and he says he will be more responsible and so far he has been. I still feel uneasy about it all but I have to let him try i suppose. DD has been doing pretty good but is not eating solids like she should again. We had a few good weeks of her eating well and now back to her drinking a majority of her calories. Hopefully she will come out of it soon. I hate when she doesn't eat well.

 

[lilesMom]

Thanks hon xxx
He knows now he will walk late and stuff
Bit I'm not sure he realises it will affect Simon his whole life
My oh is same, he pretty much ignores medical side too
Never cones to appointment even on his day off
But we r ok again now.
Had phase where.I wanted to kick oh ass :-D

We hope hayley eats properly again soon
Simons food is picking up again but with bad days thrown in
Xxx
Its hard when they can't eatwell
On them and us xxx
Hugs Xx

 

[essie0828]

Hey lady

How's Simon? DD is doing pretty well. She's trying to say more words and I love hearing her voice. She's normally quiet unless something is wrong and then she moans a lot. To hear her babbling inher sweet voice makes my heart warm. She's been trying to sing lately to.

Well it looks like I'm going to be a single mom soon. I am seperating from my husband. We are set to move to a new apartment in 2 months. Sink or swim we are on our own then.

 

[lilesMom]

Aw hugs hon
It's gonna be swim Xx
U already do it on ur own,
Now u will hve freedom to not carry around dead weight aka dh Xx
Sorry it's come to this for u.
I'm always here if u want to chat and or rant xxx
I'm glad hayley is doing so well Xx
Little cutie xxx
Simon is doing well.
They hve decided his choking episodes are oral motor issues.
So starting help for that.
I think a lot if it was Reflux too to be honest
S is on antibiotics and I'm on steroids
But nothing major at the mo.
Thank God.

Hope things r better for u soon xxx

 

[essie0828]

The oral motor exercises will help him with the choking episodes and will help to curb reflux. It strengthens their throat muscles to. Granted DD still has problems with it but she's came a long way. Lil man will to.

I hope you feel better soon. And the lil guy to. Thank you so much for the support. It means a lot.

 

[lilesMom]

Thanks honey Xx
Don't ever feel alone cos ur not Xx
I may not be physically there but I talkto u more than most of my real life friends :-D
Xxx
Hugs hon.
Hve u apartment picked?
Are u happy with the area and stuff Xx

 

[essie0828]

Thanks hun. I don't see any of my old friends anymore since Hayley was born. They don't have kiddos and it's just too different now. Haven't picked an apartment yet but we will stay in the area. We were approved for respite care services recently so when I do move if things get to be too much I can have a nurse come and stay with us while i rest or clean or anything really. Feel a little odd about using it because she has never been away from me but the service coordinator was really nice. She said that I don't have to leave her but the nurse will still come out just to be an extra set of hands. That's a comfort to know. We are on a waiting list for another waiver that will provide even more child care services. DH says he doesn't want to live separated. I still think I do.

Have you ever played with Google Earth? I was looking on there at Ireland recently. It's a very interesting and beautiful landscape from above. The farmlands look like neat little green boxes. And lots of them! That's how I do my world traveling, playing on Google Earth late at night,

 

[lilesMom]

When Simon was tiny
I was called by a charity who offer respite.
I told them I didn't need it, they said I could call back if I needed to
I'm seriously thinking bout it lately
But like u I don't leave Simon and ref couldn't to a stranger
But I would love a break sometimes
Feels,bad admitting that, I love him heaps but would like guilt free me time :-D

U think u might change ur mind about dh?
Sometimes I think on my Own would be easier
We spend no quality time together and bug each other far too easily
But I do love him and don't want anyone else so.....
I don't want to split, I just want us fixed
But I'm not sure I ever see that happening to be honest
Posting cos on phone

 

[lilesMom]

I've looked at my house and my parents house on Google earth :-D
Ireland is pretty, too much rain though
Without it we wouldn't be so green I suppose :-D

 

[essie0828]

If you get a chance check out Red River Gorge in the state of Kentucky. It's my back yard so to speak We moved a little west of there to a city but I grew up close to there. What part of Ireland do you live in? Without being very specific of course

I don't know if I will change my mind or not. Like you I don't want anyone else but right now I think living apart would be better. I guess it's really up to him, I've drawn my line and well, I'm really damn stubborn. If we do divorce that's it for me, I'll never have another man around not worth the trouble.

 

[essie0828]

My mom laughed when I told her about the respite nurse. I've never even left DD with her for longer than it took me to go to the doctor. Don't feel bad for needing a break, ever. It's a hard job being a mom and it's even harder when the kiddos have medical problems. Mabey you should consider the respite. Even if you just stay home with them, you may really hit it off with your worker. Even if she just holds him while you have a meal or a coffee or a bath. I think it would help. I'm going to try it I think but I'm not going to leave her. Just going to have them over for a few hrs to play with DD and see how it goes.

 

[lilesMom]

I'll check our ur back yard soon :-D
Sounds cool. Impressive name
I'm from north county cork.
Proper country side, surrounded by fields but close ish to 3 small towns
An hour and 15 mins from munchkins therapies
I lived here when I grew up.
Lived in cork city for 11 yrs and then moved aback
Cos of lower house prices :-D

Yeah if our respite would let me stay I would chance it
Be nice to hve a bath or do proper cleaning of house :-D
I should check it out again
How much time would u be aallowed?
Could def be good if our lo s like them :-D

 

[essie0828]

We are allowed up to 160hrs every 6 months for respite. It has to be scheduled in 4 to 8 hour blocks. I'm going to check into it especially for getting some house work done. Lots to sort out and pack up. I would also like to paint. No way to do THAT with a fall prone toddler underfoot,

I gotta check out your part of Ireland soon. I will probably end up moving back to where I was raised eventually. For now being close to kiddos therapies is nice. We used to have to drive at least an hour to get to a proper store when I was a kid. A little farther than that for medical stuff. The driving was the worst part. And being near crazy in-laws

 

[lilesMom]

Yeah I thinking painting as well :-D
Could def be very handy.
Would feel weird but Def good.
I've often thought of asking my niece to babysit while I'm here
But she might be uncomfortable doing it
And I might be too watchful :-D

 

[essie0828]

I'm an overprotective mom to. I don't know how I will ever let DD go to school. I really do have separation anxiety when I'm not with her. When she was having her tubes put in her ears I paced like a psycho and basically ran to her in the recovery area. The nurse was trying to show me what room to go to but I heard her crying and blew past the nurse and into her room. The nurses in the room scattered when I got there. DH said I scared them and that I looked like a crazy person. Being a big gal, I probably did scare them but I didnt mean to. Just don't stand between me and my baby when she is cryin. Lol. And recently DD has learned to turn the locks on our interior doors. The lil turkey locked herself in my bedroom! I panicked and just broke the door down. Busted it beyond repair. DH was trying to tell me I could have unlocked it with a credit card. Nope! I'm not running all the way to my purse to get a card with her in my bedroom getting into God knows what. Looking back it may have been a little overkill. The door still ain't right

 

[essie0828]

Btw, I was reading up on your part of Ireland. Very very interesting! Read the legend behind the Blarney Stone and read up on peat bogs. I didn't know anything about peat being used as a fuel. Fascinating! I had seen the dark spots from Google earth and couldn't figure out what they were. Wikipedia helped The sea cliffs and peninsulas are beautiful. Lots of limestone just like here Although we are very much landlocked here in Ky. It takes 6 to 7 hrs driving to get to the nearest beach. Lots of cliffs and trees where I'm from, lots of oil wells to. That's what most of the men in our family did a generation ago. Work in oil fields drilling and pumping wells for oil and natural gas. Most of the forest has been protected and is a national park now. It's basically just too rugged to log anyway. It was a great and wild place to grow up, I learned a lot about nature from sitting in the forest just watching quietly. I miss the wild. We always complained growing up that there wasn't anything fun to do and now I find myself going back there just to hike for fun.

 

[lilesMom]

The light from phone is disturbing munchkin
Post tomorrow xxx