Monday, November 03, 2008


<span class=

The above are words to a song that Josie is learning in Sunday school. This morning, they're a comfort of sorts I suppose.

Marie is doing really well right now, Josie is doing well, the weather has been nice, the girls are healthy and yet... It is really hard to not worry. There are just so many things to keep track of, to think about, even when Marie is doing so well, I sometimes get bogged down and feel overwhelmed.

Saturday night I went to the grocery store, Luke was with the girls and I turned the car radio up loud (louder than the 4 year old approved volume) and let myself space out a little bit. Walking into the store I was blindsided. I was approached by our case worker from Social Services who I had worked with to get Marie approved for Medicaid.

Medicaid, my arch nemesis. I do so dislike it on so many levels. I think that for some, it's a blessing, for some it works, for us it's been nothing but a struggle. There is a two year waiting period to put a child on Medicaid in the state of Colorado. We jumped the queue because Marie was approved for a Pediatric Hospice Waiver (if you stop and think about it, that's a little depressing. We have a situation dire enough to warrant skipping two years of waiting). However, we have wonderful insurance. They cover nearly everything for Marie, we have a case worker with our insurance who is not only knowledgeable but compassionate, she actually cares about what's going on with us. They acknowledge how wonderful and special Marie is, and treat her as completely unique. We are grateful that our insurance company has been so good to deal with as I know this is not often the case. Back to Medicaid, insurance does not cover everything, and we have a deductible, and I know that even though they've said they would not drop Marie, I still feel the need for a back up plan. Enter Medicaid.

The waiver does not work for us, because we are insured. We did not use it in the time period specified because insurance was paying for the many aspects of Marie's care, and we were dropped from the waiver. After months of work, piles of paperwork, hours of phone calls, weeks of wracking my brain, the brain of Hospice, trying to figure out how it could be saved, we were dropped. Now, this is not definite. There are still people working to try to keep Medicaid for Marie, but as of the moment, it's done.

As I was walking into the grocery store the case worker approached me and asked how it was going with Medicaid. I told her we were dropped, some people are still working on it, but it's upsetting to me and I try not to think about it. She looked at me and told me she figured that would happen (she could have mentioned this four months ago). I cannot help but feel the entrance to the grocery store was an incredibly inappropriate place for this conversation to take place.

I wandered off toward produce, my buzz officially killed. My mind a whirl of anger. I realized that I cannot speak about this situation without becoming so angry I struggle for control. My child is very sick, we applied for help to have a back up plan, it was not essential for us, but it would have been comforting to have a "fall back". It was hard to apply for that help, it involved swallowing a great deal of pride and admitting that some things are just too big. In the last year Marie's medical bills have reached a level of value equal to our home and it could easily happen again. It would have been nice to have a safety net. Marie has been diagnosed with a disease that they say is terminal, she requires round the clock specialized care. I cannot let her sleep in a crib because she cannot cry to tell me when something is wrong, I cannot simply run to the store or to the preschool with out planning ahead. Our lives are affected in new ways that I discover still. We have had to open our home to many different people, just to help us to provide our child a level of care that she deserves, and throughout all of it we struggle to maintain a level of normalcy because there is more than one child involved here.

We are insured, therefore, we are not eligible for assistance. This sort of pisses me off. I told someone at the state I should complain to my representative, tell them how the government has failed in this instance. I was told it would do not good to complain, our area is so rural, there aren't enough votes here to make a difference. No one would care what I have to say. That is exactly what she said.

We're too rural, and yet in this area we produce goods that help to feed a nation. We're too rural, yet they want to take acres of our fields out of production to put up wind turbines to provide energy to cities that desperately need it. They'll do this, and be happy with green energy, but be angry when bread reaches $5 a loaf, and the farmers won't see an increase in profits while expenses to produce a crop continue to rise.

So many things are broken when I look around, and it's upsetting. Things feel unsettled, and on the eve of an election I think the feeling is more pronounced. I know my vote counts, but I still think I need to pray for God to guide a nation. As for Medicaid, don't even get me started!

post signature


The VW's said...

I'm so sorry that you have to go through all of this! I can relate to a lot of what you said and I can totally understand your "unsettled" feelings! Hang in there and know that you are not alone! God has it all figured out! God Bless You sweet friend!

Terri said...

I came accross your blog today and wow I can relate. My daugher Megan turned 2 Oct 17 and is diagnosed with Mito COX/Complex IV- can develop into Leighs, but symptomatically she is in critical shape too. Looking at your girls and Marie looks like Megan laying on the floor. Megan has yet to reach any milestones, but we are working hard at it - why not right? Today I felt really helpless and alone in our journey, but reading your blog grounded me as your life sounds so much like mine - there are other people that have the same stuff going on as us. I will put you all into our prayers here in Florida.