I'm Thankful For...

This year, we are feeling very thankful. Sometimes I feel like I've had my eyes opened for the first time, that now I know what it's all about. I'm grateful for that clarity, our lives have changed in the last year. At first glance you'd think it would be terrible, but really, life is far richer than it's ever been before.

This year, I'm thankful for...

• My Josie, my light. She keeps me going, pushes me to be better. She's upfront, independent and a handful. She is fierce, sensitive, and a constant amazement. Where did this child come from? I'm thankful for her, she brought Luke and I together, she made us grow up. She is a streak of light.
  
• My Marie. I have learned more from her than anyone else in my life. Josie made me a mother but Marie made me complete. She shook up my life and made me consider my soul. She brought me closer to my faith, she taught me about courage. She makes me better everyday and I am so grateful just to be around her. To hold her in my arms is the sweetest gift, I could not ask for more.
• Smiles. Just the act of a grin. Until it was missing I did not realize how big it really was. I am grateful and PRAISING GOD for those smiles.
• My Luke. He gets me. I have a huge crush on that man.
• Prayers. All the prayers said for us, thought for us, screamed silently. I am grateful for everyone who supports us, lets us now they're praying. I'm grateful for everyone who prays silently. For the people I have no idea about. For every prayer uttered, I am grateful.
• For my old friends, new friends. All the people that put up with my craziness and tell me that I'm doing okay when I really need it. For those who have taken my kids at the last second, for friends who are there in the moment I need them most. For old friends I've reconnected with, for new friends I've made. For the friends that have been there the whole time.
  
• For my church. What a rock. We could not have made it through the last year without Zion. I'm so Thankful for all of them, and everything they've done.
• For good harvests, for rain. For snow, and sunshine.
• For coffee.
  
• I'm thankful we live in a small town. Everyone looks at us and knows our story. That can be a double edged sword, but it's been almost nothing but good. We've felt rallied around, and we're thankful we live where we do.
• I'm thankful for nurses, therapists, doctors. Not all, but among the masses are shining gems. I'm thankful that these are the people that have come into our lives. Nurses with compassion, therapists with understands, doctors who care.
  
• Family. The support we've found there is something we draw strength from all the time. For all of you who've watched the girls, made a meal, or called just to cry with us, you are priceless.
• For every day. It's cliche, but every day is such a gift. I don't think I could ever look at them the same again.
  

Amazing girl.

For every one of those smiles. I could spend the day just trying to see that grin.

Fancy toenails. She's growing up so fast, who'd have ever thought that 4 meant she'd be such a big girl?

New shoes. She's growing and thriving, Praise God! This is all due to Him, he answers prayers. A year ago, we had no idea we would be in a place as good as we are now.

1 Corinthians 13:1-13

1. If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal

2. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing3. If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing.

4. Love is patient, love is kind. It does not envy, it does not boast, it is not proud.

5. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.

6. Love does not delight in evil but rejoices with the truth.

7. It always protects, always trusts, always hopes, always perseveres.

8. Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away.

9. For we know in part and we prophesy in part,

10. but when perfection comes, the imperfect disappears.

11. When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.

12. Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

13. And now these three remain: faith, hope and love. But the greatest of these is love.

Not Me Monday

So, I am going to do this. I've read it forever and decided today that I am officially going to do Not Me! Monday. Rules and regulations can be accessed by clicking on that link.

Okay, here goes!

I did not let Josie and Marie have candy in their play tent just because they were camping, and it wasn't 10 am when I did it.

I did not listen to Sublime and hum really loud whenever they swore hoping that Josie wouldn't hear the words they were saying. Need it be said that everyone needs a little Sublime time? It's therapeutic.

I would never justify going tanning by my needing a break from it all, and claiming that my complexion is dark enough that once a week wouldn't really hurt me anyway.

I most certainly did not make popcorn with extra butter, cut up an apple and some cheese, and call it dinner for Josie and I last night.

I absolutely, not ever, in a million years, did I not spend a little time in a corn field with Luke yesterday and realized that maybe, just a *teeny* *tiny* bit, I sort of miss being out in a tractor sometimes.

While in above mentioned corn field it did not occur to me with frightening clarity that I may have issues with being able to relax. Surely I can, perhaps it's just that I'm high strung?!

Sunshine!

I feel better! Even slightly sleep deprived (Marie is cutting her eye teeth now and woke up at 4am ready to party) my head is clearer and my outlook much brighter! It is amazing how not feeling your best can really mess with your head.

The above photo is of Josie, take in May 2007, its one of my all time favorites. I feel a little like that today, if I had a pretty dress on I just might twirl!

Marie, as I said is cutting her eye teeth now. I think they're hurting, but it's hard to say as she also got her RSV shot yesterday and that could be making her legs achy too. Either way, she was up at 4 and Luke and I did our best to ignore her until a more reasonable hour. At 6:30 I got up with her and she was all smiles and talking when she realized we were actually going to get out of bed! So much more vocal these days. Yesterday she interacted with the nurses for really the first time in a very long time, and it was neat to see her talk and smile with someone other than her immediate circle. It confirms my belief that Marie is very aware of whats going on around her. She did not cry when she got her shot, though her eyes teared and her face got red. Afterwards she nursed a bit and dozed off, then we headed home.

Josie is doing lovely as always. She is going to be the ball in the Christmas Pageant at church. They're doing a bit of a different story this year and it should be fun! She has also started planning her birthday party, though she won't be 5 until the end of January.

We're getting ready for Thanksgiving, Luke is busy fixing the garage roof (and then he'll probably be back in the field helping with corn harvest again). Part of it blew off in those 80 mile per hour winds we had a few weeks ago (imagine that!) and he's hard at work. Don't feel bad for him, he sort of enjoys this kind of thing.

All in all, we're good and the sun is shining. Last night I was completely overcome by a feeling of joy and peace with things. Josie was running around in her underwear before bath time and Luke was tossing Marie in the air to her delight and she'd squeal and do her silent giggle and I realized that life is pretty good. We don't' want for anything, if I was honest, I'm a little spoiled. My girls are happy, and while Marie's health is something that is a constant struggle she is full of joy and that's enough. That and Luke, well, I couldn't ask for anyone better. Somewhere between giggles and bath time, book reading and making our very own pinkalicious cupcakes, nursing, Josie writing Mommy on everything she can find, and lots of hugs, I remembered I am a very lucky girl and I'm glad God smacked me upside the head and made me realize it. Thanks for the tough love Father. Be patient, I know You're not finished with me yet!

And, since I posted an old picture of Josie, here is one of Marie about that time as well (so that there can be no jealousy between sisters both have been represented equallly).

Decompressing, macaroni and cheese, and silly girls.

I have spent the last week sort of adjusting. I've been feeling all out of sorts. Going on vacation sort of made me realize how difficult day to day life can be. Or, it made me aware of how things are here... or because I got a rotten cold everything just has been feeling worse even though nothing has changed.

Marie's doing so well allows time that would normally be spent worried about her to think of other things. Sometimes it strikes me that instead of doing dishes, then washing syringes most people just load the dishwasher and are done. Venting bubbles from Marie's belly has replaced burping, and she wears a mask into the preschool when I drop Josie off for the afternoon. Sometimes, when I'm not at my best and feeling a little down I miss how simple life used to be. If Josie got sick I'd cuddle her for a few days and it would pass. If Marie gets sick I call the doctors to let them know, begin praying, monitor her breathing, ask hospice to come and check her vitals, rock her and hold her and love all over her with a little nagging fear in the back of my head. I miss how easy things used to be.

There are days when I feel completely beat down by the hours of phone calls with insurance and medical billing, Medicaid, etc. The hours of additional nonsense that goes on, the fact that Marie's statement of benefits folder from our insurance company is four inches thick. I've learned that medical billing is something I need to keep up on. I can't trust the bills that come in the mail, I have to double check them as we have repeatedly been billed for things that were not ours to pay. The when that's all done there's still laundry, dishes, and trying to find time for Luke and I so that we stay sane. Sometimes, I just feel tired.

And yet, I willingly, gladly take this all on just to have Marie. She repays me in so many ways... Ugh. I just feel overwhelmed. Advocating is exhausting even though I'm passionate about it, and the struggle to find the hours to provide the care that Marie needs and the hours to provide the time that Josie deserves...

On a brighter note, I finally found a really good macaroni and cheese recipe! This has been on my list for some time, and this one is good! Josie loved it, and Marie liked it too pureed with some half and half.

And finally, I've been meaning to do this forever!

FUNNY THINGS JOSIE SAYS:

This is an old one. On Halloween she was worried about her preschool party. She told me, "Mom, in my class there's way more boys than girls". Why are you worried about that? "Because, what if there's dancing?". Then I had a flash, she expected her very first school party to be like Cinderella's ball!

I burned my wrist on a pot on the stove. Thinking I was alone but still cautious I spelled out my curse words. Later, Josie randomly asked me, "Mom, what does S-H-I-T spell?"

"Bunny drinks really expensive juice. I cannot believe how much his juice box costs." How much does it cost? "$300". Wow, what kind of juice is he drinking? She looked at me like I was a total idiot, "Cranberry."

"Daddy, shave your beard." "Mommy, tell Daddy he needs to shave that beard". Luke looks so deliciously scruffy, I have a total crush on him but I guess Josie doesn't like it.

"Mommy, what's inside of an ant?"

"I think that this candy is purple because God loves purple and He made them that way".

"On this night we do a shower, on this night we do a baff. We do a lot of that because Marie is smelly."

"Why does Christmas take so long to get here?"

I'm going to start a new one, because Marie doesn't say funny things, but she does a lot of things, and they need remembering.

THINGS MARIE DOES:

She can wiggle her ears, and she does it a lot when she's mad.

A chocolate pudding beard all over her chin makes her look alarmingly just like her Daddy.

Marie proved you don't need any noise to laugh. Her silent chuckles are one hundred times better than any belly laugh I have ever heard.

I spent several hours peeling, chopping, spicing apples and I cooked them extra long to make the most wonderful smelling, perfectly textured applesauce ever, just for Marie. She did not like it.

Marie rolled over on her side, either by grabbing the leg of a dining room chair or something. I had been washing dishes and she did it in the few moments between me checking on her. I rushed into the dining room afraid that she hurt herself, or she was stuck, or that she couldn't breath. I rolled her over and she grinned at me. I was terrified and she was thrilled with herself.

I suppose I don't have it so bad after all!

• Luke 2:19 NIV

  But Mary treasured up all these things and pondered them in her heart.

Our Trip

As I said before, we had a wonderful vacation! If I'm being honest, I was a little scared to go. The idea of packing all the things we use daily for Marie, formula, bags, syringes, medicine, baby sling, stroller, diapers, medical folder, Do Not Resuscitate order, all of these things must travel with us and it's a little overwhelming.

Still, we packed up and we went. Our cabin was perfect, and Rocky Mountain National Park was all ours most of the time we were there as we visited during the week. It was a little cold, but both girls had fun, and Marie enjoyed being out and about far more than I would have expected. I'm really grateful for that.

It was funny, away from our day to day lives, I felt so much peace with where we are right now. I keep using the word grateful because I really am. We don't know how long Marie will be with us, right now she's doing so good, but it could all change in the blink of an eye. We were so blessed to be able to show our baby a little of the world. I know that what we have here pales in comparison to Heaven, but as you can see from our photos, God has made some awe inspiring things.

As for Josie, every trail must be walked, every rock must be climbed, she would prefer to be in the lead thank you very much, and she saw two foxes, got some shiny rocks for her rock collection, and a big box of salt water taffy. She was over the moon!

Do you know the old country song? "If God doesn't live in Colorado, I bet that's where He spends most of His time". We could definitely feel Him with us every step we took.

• Psalms 34:8 NIV

  Taste and see that the LORD is good; blessed is the man who takes refuge in him.

• Psalms 84:5 NIV

  Blessed are those whose strength is in you, who have set their hearts on pilgrimage.

In no particular order:

Lily Lake

A good resting spot.

Smile

Adventure!

Moraine Park

Climb!

Bear Lake Road, near Glacier Gorge Junction

Elk

Sprague Lake

Sprague Lake

We're back!

We are back from Estes Park and had the most WONDERFUL time! We hiked, we ate, we loved each other, and we made some beautiful memories. I have a ton of pictures, and I'll try to post them later.

Unfortunately, we did come home with head colds. Mine is rotten, Josie's is not too bad at all, and Marie's hasn't been bad but today she's having a rough day. I think she's also cutting that last molar. She's had lots of movement issues all day, no desire for solids, just wants to nurse, and isn't napping well. Please pray this is no big deal, and she gets better soon!

I'll update on the trip and photos as soon as things calm down around here.

In the mean time, if you can this week, do a random act of kindness. My wonderful cousin Renee lost her little boy Quinlan a year ago this week. In his honor, she has asked that everyone commit one random act of kindness. I hope you'll join me in honoring sweet Quinlan's life.

Vacation, Award and Prayers

I'm probably going to be all over the place in this post. First off, I got a blogger "award":) Thank you to Colleen at The Princess & The Monkey for thinking my ramblings were worth reading!

The rules of the award:

1. List 6 things about yourself

2. Pass this award on to others

Six things about me:

1. I got the stomach flu on Tuesday, it was horrible. I pray that no one else gets it!

2. When I was little I wanted to be a barrel racer when I grew up.

3. I liked horses so much I majored in them in college. I have a degree in Equine Science with a concentration in Industry. I worked at the Arabian Horse Association for two years before I became Josie's mommy (it was an experience, being that I am a Quarter Horse girl at heart!). I still have a state 4-H judging card, and though I haven't judged since Marie got sick it's something I love doing.

4. I still get up at night at least once to make sure Josie is breathing, Marie sleeps next to me and I check that she is still breathing far more often.

5. I'm still nursing Marie. I've nursed her twice as long as I nursed Josie (she weaned herself at 10 months). I hope that we can continue nursing for a long time to come, although I never considered myself a proponent of long term breastfeeding, it is nice.

6. At our house, we girls must always have our toenails painted. Marie always has hers painted too. It's a girl thing, Daddy doesn't understand.

Pass the award along...

I'm going to pass it on to 4 of my favorite blogs to read. They're the ones I find myself checking at least once a day!

1. Bear and Bambi's Adventures

2. Angels

3. Gavin's Voice

4. I'll Stand By You

Next up, is a very cool thing I discovered at Bring The Rain. Her post, Seven Prayers a Day, hit home for me because I do pray for my children every day, but sometimes I'm a little lost on what to ask for. I pray more in vague ways, let them be healthy, let them be happy, let them know peace, but I love the way she has done this. When things are rocky here I get such a peace from scripture, and I love the idea of praying it aloud to my girls. What a comforting thing for both of us. I'm going to try really hard to put this into practice, and I wanted to post on it because maybe it's something some of you would like to do to.

The seven prayers are listed on the Bring the Rain website and I'm thinking I'll print out a couple and put one on the fridge, one in Josie's room, etc. and try to get into the habit.

Lastly, you can catch us later, we're outta here! Tomorrow morning we are leaving for a much needed, much anticipated vacation that I didn't want to say anything about because if Marie wasn't doing well we wouldn't go. But she is, and we are so we're going! We rented a cabin in the mountains and we'll be gone until next Wednesday!

See you all later!

Shan

First haircut!

This morning I took Marie to Veronica's and Annie gave Marie her very first real haircut! She was incredibly cute, smiled and cooed while she was combed and snipped, and then she got some cuddles with Veronica while I got my eyebrows done ;) All in all, perfect first haircut!

As you can see, I think she knows she looks good!



Josie was trying really hard to take flight in the dining room too, and it was worthy of a picture!

Decided...

It's over. The election. I'm looking forward to no more of those commercials and no more of those phone calls at dinner time. We were leaning another direction, but things have been decided.
We're a little nervous, worried about the future. Because our livelihood is based in agriculture changes coming could greatly impact us. I found this on the Obama website today. I pray it's the truth. I pray that our new president is guided in his decisions, I pray that we can overcome this huge divide and come together as a nation. I pray for President Bush, and our future. Really, what more can you say?

The daily verse for today sums it up well I think.

Everyone must submit himself to the governing authorities, for there is no authority except that which God has established. The authorities that exist have been established by God. - Romans 13:1 NIV

A little devil and a butterfly...

Ready to head out...

Big smiles and mashed potatos!

Pounding the pavement...

Silly today (she love's this t-shirt M! Thank you again!)

*** I just realized Marie is 20 months old today! Can you believe it??!! ***

Unsettled...

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!