Friday, May 22, 2009

At the end of another long week

Time is flying by right now. It seems like all our waking moments are spent playing, running, thinking, struggling... looong week.

The house is coming along, drywall is done and textured and waiting for paint. Unfortunately a plumbing leak in the guest bath required that a newly patched ceiling come down and lots of work be done but luckily Luke was able to do the plumbing himself. It should be ready for paint by next week.

Josie's last day of Preschool was Wednesday and we had a picnic at the park. Very cute to see her with her classmates. She is missing school already but with Vacation Bible School next week and gymnastics and hopefully some swim lessons starting soon she'll be busy before she knows it.

Marie's doing great, her allergies are not fun, but otherwise she's busy being two. Her attitude is showing more these days and I'm grateful to see her being a stinker. We're outside as much as we can be and she really loves that. She also gets so excited when it's time to go somewhere, she loves being out and about.

I've spent the week researching Medicaid stuff and came to the conclusion that we might be on the wrong waiver. Unfortunately, what I think is the right one probably has a waiting list of at least a year and I was told there are no exceptions, even if you have a terminal diagnosis. We're lucky to be on the Pediatric Hospice Waiver and have Medicaid as a backup plan, but the waiver doesn't have any services we need (insurance pays for hospice) and the other waiver I've found could benefit us. I'm becoming totally neurotic. I've spent at least two hours a day reading, bugging people, learning Medicaid, trying to find a CNA class in even our extended area that I could get into, and generally feeling like a dog chasing my tail. It is so stressful and frustrating, and to fight for your child and find little doors only to have them slam shut is just. tiring. Advocating is tiring. Seriously. It's my job, it's worth it, and for Marie I would do anything but emotionally it just drains.

I find myself in a place where I have to admit my weaknesses to people that I am not close to. I have to discuss Marie's life and the fact that while she is doing absolutely amazing it may not always be so and time is limited and explain why we just can't wait on lists for years to people that I've never met. It makes me mean, stressed out, short on patience, and in a whole fed up. What really is the worst is knowing that we have it sooo good compared to so many families that are just drowning while trying to cope with children who are fighting huge battles. It's just sad.

I find myself looking for things to remind me that the world has some good left. Looking for that and online classes to get my CNA which if I even think about it pisses me off a little more. I have a bachelors degree in a science field. I am intelligent, I know how to provide Marie's care better than any person on the planet, yet I need a certificate in order to be paid for the time I spend providing a highly skilled service. Did you know you don't even need a high school diploma to get your CNA? Seriously.

**I just realized maybe I should clarify what exactly it is that I'm fighting for. Pediatric Hospice Waiver provides respite care, but only if it's done by a Registered Nurse or Certified Nurses Assistant. That means a stranger would come into our home and that's who I would leave Marie with when necessary. Provided they be willing to take on Josie too. Right. I don't like this at all.

I have some very qualified girls who I'm totally comfortable with, do things my way, know to call me if anything even looks even remotely weird etc. They deserve to be paid for the level of responsibility they take on. I can't afford that. So, trying to get the state to provide respite care. They will if it's a CNA or RN. I'm not down with that, I want to leave Marie with someone who loves her, I want to leave my baby with the person I choose not someone who the state deems worthy because they have a certificate. Marie is incredibly special. I also cannot leave and have any peace unless the watcher does everything my way. My fear is, I can't trust a RN or CNA not to think they already know how to care for Marie. They don't, she's not their baby. I can trust my babysitters, even if they're not yet 20. They love Rie, they fear me, they are like family. I choose them, plus they're more than babysitters. They are providing specialized care, I trained them.

Of course there are CNA's and RN's out there who are wonderful. Unfortunately all the ones I know who are as wonderful as I think they need to be for this job work full time already.

Next step, I become a CNA myself so that the state will pay me for Marie's care (as her personal aide) and then I can pay who I deem worthy of watching my kids what they're worth. Only federally funded health care could make this so complicated. The fact is that the exact program I need exists (train and pay your own staff via medicaid benefit for a very select few, we qualify), if you're over 18 currently, or if you can make it on to a waiver with at least a one year waiting list it could be up to 3-4 years, no exceptions .**

But, we planted flowers this morning. I have the foundations of a pretty decent tan (skin cancer be damned, if laying in the sun makes me happy I will do it right now, thank you). My Josie and I are going to make rice krispies treats this afternoon. I'm hoping Luke will be home and not so tired tonight that we can maybe watch one of the millions of shows we have recorded that we never watch. It's no longer winter and Marie and I can be out and about. I actually took her to the grocery store yesterday, she was amazed.

So I have a lot to be happy about.

It's just that sometimes renovation on a house that is not going as planned, admitting that after over a year and a half of Marie being sick we need some help, fighting for Marie in an arena I don't fully understand, topped off by the fact that because we are in such a rural area there are a lot of things that are just not available no matter what I do... it just gets a girl a little down.

Hopefully next week I make some headway with things. As for the house, one hiccup in such a big project is not bad.

I am getting so excited for Landon's Hope Walk next week! It is going to be awesome to see everyone, and I can't believe how much money Tami has raised in memory of her little man. I'm looking forward to this so much! If you can, there's still time to join us there ;)

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I just read my post and realized I sound like a complete control freak. I am. And a neurotic one. Don't mess with me ;)

6 comments:

DESJ and Company said...

Hey Shan-
what waiver exactly is it? It's an Illinois one (you're downstate, right?)
I wonder if Dovi would qualify-we're currently on the HCBS Waiver for Technology Dependent Medically Fragile kids, but I'd switch if I could get paid to care for him!

DESJ and Company said...

b/c I looked at all the hcbs waivers here in IL and don't see that one listed.

The VW's said...

Being a momma is draining, then add being a momma to a very special child and it's doubly draining! Not to mention you are moving, remodeling and PREGNANT!! Take care of yourself you neurotic control freak! :)

Seriously, doing the best for our special little ones is very emotionally draining and it doesn't seem fair that when they or you need something, that it's so difficult to get it! I'm not one to ask for things and I hate government handouts, but this is one area that the government should try to make it easier! We are talking about fragile children and emotionally spent families and mommas! If only I were president..... :)

Hang in there! I'll be praying for you! And, please remember to take care of yourself too! HUGS!

Colleen said...

oh the whole respite care things is such a PITA! I sat and fought trying to find a RN to care for Kennedy, to find that agencies around us pretty much took adults and months later when I finally found an agency, according to medicaid she wasnt sick enough. Shen had qualified for CNA, but the agencies I was dealing with didnt let CNAs give meds including diastat...and to me if they couldnt give meds, what was the sense of having one there, I couldnt leave anyways. I quit looking and have a couple people I trust babysit when needed or just dont have a life pretty much. I wish I could help, but all the states are so different in their waivers. Good luck! Oh yeah and in the state I live now I went through CNA training and actually learned less than when I was not certified ina different state.

DESJ and Company said...

Shan-
Not a clue why, but Iwas CONVINCED you were in downstate IL.
Well there you have it.
I wonder if I could become Dovi's nurse on the waiver he's on?
I sure could go for the 39 hours of pay that our nurse gets!!!

shan said...

Amen!