Friday, November 28, 2008

A different perspective!

Marie is not supposed to see well, or have a much motor control. Extreme things are not supposed to be pleasant experiences for her. Too much heat, too much cold, situations where her body is forced to adjust to extremes are supposed to be uncomfortable or difficult, or so they tell us. That said, apparently she's not listening!

Happy, happy, happy to be upside down!

Again Mommy! Every time we do this, when I put her upright again she arches her back and straightens her legs and will attempt to put herself back upside down if I'm not fast enough for her!

Josie and I worked for hours this afternoon on our gingerbread house. There was some candy leftover.... until we ate it!

It is getting to be that season, can't you just feel it?!!

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Wednesday, November 26, 2008

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.

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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.

Monday, November 24, 2008

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?!

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Saturday, November 22, 2008


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).

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Thursday, November 20, 2008

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!


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.


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.

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Saturday, November 15, 2008

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.



Moraine Park


Bear Lake Road, near Glacier Gorge Junction


Sprague Lake

Sprague Lake

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