That was cool! It is how some of our minds work - LOL!
I saw a new miniature museum in Germany (online) and it had working trains, cruise ships and even an airport with planes etc. I showed my kids (who usually glaze over with these things) and they also were fascinated. I now want to go to Hamburg to see it!
Ryan is back in hospital. With nursing help in our house - it is rare that he goes in hospital. The MRSA is back and his skin is breaking down. He has NEVER had skin issues in the past - he receives excellent care at home but as fast as we can get one sore to heal - he has developed another.
My ex, apparently, is off to Russia. He is spending $ like water these days - money he claimed not to have when he was paying CS. Seems he hid it then bought himself expensive cars and vacations as soon as Ashley graduated (although he did not attend her grad - she did not even invite him).
As he has for all of the past 11 years - he left no contact info. So I cannot let him know about Ryan. What a dad!
On a good note - I picked up my son on Saturday and my daughter met us. It was his birthday and we all went to Cirque du Soleil then for a really nice steak and crab dinner. He seemed very pleased. He said his dad came in a few days earlier (on a work day) and took him out for lunch. He told me it was rushed and he wished he could spend more time with his dad and actually talk to him. But his dad would never do that (without maggot) so it doesn't happen.
My ex has chosen this lifestyle for himself. He does little for the kids. I'm not sure how he lives with himself. I will be at the hospital every day until Ryan is released. It is hard - Ryan is non-verbal and I really don't know anyone else in my new town who would visit. But last night as I was leaving the hospital, a nurse said this to me...
"You are an Angel. A Godsend to your son!"
This meant the world to me. To be reminded that I made a difference. Ryan smiled when I talked to him too - amazing, considering he is uncomfortable and itchy.
I had just spent a couple of gruelling days fighting with his agency's supervisor (she's a thorn in my side). From the time I got up yesterday we were fighting while I was still in my pjs (she was at the house). About her overcharging me, about her further demands of my time, that I don't always show enough gratitude) Grrrr - how she doesn't see that this IS my whole life. Not just the one year she's been running the nurses here but I've already got 28 years of Ryan being sick under my belt. (I had also heard her talking negatively about me on the phone the previous day when she butt dialled me - THIS while I'm trying to deal with a very sick son.
Venting. Venting. Venting.
The sun is shining. I'm going to the hospital. I hope to get out before dark. I will make Ryan's day better though.
As for the MRSA - go to pubmed and put in MRSA AND cranberry and you will find an article about cranberry extract inhibiting staph growth. (It doesn't just work for bladder infections!) You can give cranberry tablets or cranberry juice daily - at the very least, it might help prevent recurrences.
Also, while they've got him in the hospital, you might ask them to check his vitamin D level, if it hasn't been done in a while?
Your XH sure is a dumba$$. I don't know how he lives with himself either. Thank goodness Ryan can depend on you.
Quote:
I had just spent a couple of gruelling days fighting with his agency's supervisor (she's a thorn in my side). From the time I got up yesterday we were fighting while I was still in my pjs (she was at the house). About her overcharging me, about her further demands of my time, that I don't always show enough gratitude) Grrrr - how she doesn't see that this IS my whole life. Not just the one year she's been running the nurses here but I've already got 28 years of Ryan being sick under my belt. (I had also heard her talking negatively about me on the phone the previous day when she butt dialled me - THIS while I'm trying to deal with a very sick son.
Wow...wow... wow!
I don't know if you remember that I have a 15 year old developmentally disabled, nonverbal daughter as well. I really try to forget the hospital stuff. It's hard.
But... really? REALLY? This woman is supposed to be an advocate for your family. And she expects gratitude from you and badmouths you? WTF? Look, I know sometimes we forget to thank those who tirelessly intervene on behalf of our kids and families, but how on earth did she turn this situation around so that it appears as though she's doing you a favor? The agencies/CCBs sole existence is to provide services for the famililies, courtesy of the taxpayers. She's paid for helping you... yet you bear the brunt of dealing with her crap and being a mom? You have EVERY right to vent.
I think someone else asked about her supervisor? Man, I'd go right to the top. Her behavior is reprehensible (yeah, even a big word for me). But true. I think I'd have to make sure that other people aren't in the same predicament as you.
What a total biatch. It's people like that who are clearly not in the right field of work.
Yep, I agree with the angel comment. My grandmother told me that there is a special place in heaven for parents with special needs kids. I think they should revoke your XH's entrance ticket, though. On the basis that he's been an a*hole...
Good luck!
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."
Funny thing is - I have a really good rapport with the actual workers here myself. I go in all the time and even a week ago I got them some chocolate - one because she just told me she had worked about 70 hours that week and she looked tired. The other had hit herself in the nose while closing my van to take Ryan out. I always say Thank You. I get them little gifts at Christmas and Easter (even though I'm not supposed to). But to hear her talk about me behind my back spoke volumes. Trouble is - it is private care and she's the owner. I have researched other agencies but not one can provide the specialized care that she does. She has a monopoly and she is soaking me - but I have to deal with it because her care is exemplary (truly) so as I'm sure you know - we have to put our kids' needs first even if it kills us.
But there are some hours paid for by the government (3 hours per day) and their supervisor is keeping on top of this and giving me support and advice. If nothing more - I just need to vent sometimes.
I'm not upset that Ry's in hospital. It is tiring as I am there a lot (just got back - he slept the entire time I was there) - but it gives me a break from the "gestapo" as I affectionately call her.
As for me ex - blissfully unaware as he sails off into the sunset. Josh deserves a medal, though. He walked into this situation, supports us, attends meetings with me, even stays with Ryan some nights when I'm away. It takes a special guy to do that!
Sorry to hear about Ryan. Can't believe the owner of your private care is being a witch with a "b"! Hopefully the gov't keeping an eye on things will help in the end. Just can't believe the owner is being so unprofessional.
hang in there. hugs, kat
Me-53(and learning!) S24, S21, D18, D17 Just keep swimming, Just keep swimming. Dory
She just gouges me financially but when she doesn't even show me respect when she KNOWS how difficult my life is at times - it just boggles the mind. Today marks the one year mark since she took over his care. I arrived here with Ryan, the cats, both vehicles full and she was here along with 7 employees. It was a bit overwhelming! The girls were/are nice and they even helped us move some things in (Josh and I had moved in 6 months earlier and done a reno etc but still - there were his day to day things).
Ry slept all day today. I think he needs the peace just as I do. Just as the agency does.
I just got a message from her (of course it included THE BILL) - asking if the girls could visit him in hospital. I told her he would love that (so do I) so that will be nice.
I guess I just need another round of "SUCK IT UP". Because I don't have an alternative. You do what you have to do. And life goes on.
Prayers for Ryan. I hope they are able to quickly get his skin condition under control. That has to hurt so bad.
Betsey