Beauty

Josie, nearly two weeks, 2004.

Marie, two days old, 2007.

One of my favorite pictures.

I did not
have to ask my heart what it wanted,
because of all the desires I have ever known just one did I cling to
for it was the essence of
all desire:

to hold beauty in
my soul's
arms.

~St. John of the Cross

Millet

They will start swathing millet today. It's going to be a busy couple days for us, and as always there's lots going on just when we're busy with the farm. It should only take the guys about three days to swath, then a few to dry, then they'll start picking it up. Hopefully by the end of next week it will all be done.

This is the time last year that we really noticed things were going on with Marie. I remember millet harvest, it was a little earlier by a few weeks last year, and it was hot. I was walking down a field road after bringing dinner out to the field. Josie was in the tractor with Daddy, Marie was in the sling with me and the flies were biting my ankles. I was walking down the road, watching the sky, the wind, the rocks on the gravel, the weeds in the ditch, in my dirty tennis shoes. I was worried about my baby. Something was going on, and while I had no idea what I knew it wasn't good.

Here we are one year later, what a place we find ourselves in now. I look back at myself and I think you silly, naive girl. I had no idea. Still, I can't complain. Marie's here, and despite how she is (I can't even say what she's lost), I'll say how she's changed; I still feel blessed. I look at her and I'm so grateful that God let me have her, even if it's only for just a little while.

So, one year later. I wonder if millet harvest will always make me think of this?

At any rate, I'm grateful for now. Rierie is doing as well as she can be, Josie started pre-K yesterday and loved it! Soccer is going and she's excited to be playing, and you can feel fall in the air. I am looking forward to, and dreading this change of the season.

Marie cut two teeth this week, and I hope we get a break for awhile. She's choking more lately, I hope that's just something minor, not a progression. It's so hard to tell. There's her disease, but then there's all the little things babies do. It's hard to seperate them sometimes.

Pictures!

At the fair, it was cold and rainy but empty so it was perfect for us!

Marie's first cotton candy, she loved it!

Josie loved the motorcycles!

Looking at implements with Dad...

Whoa! Josie did not like this, we was glad to get to the bottom!

Cool enough to wear the sling again! Hooray:) (Michaelene, it's a peanut shell)

Patience Tester (too true!)

Just because Marie is not vocal doesn't mean she can't get her point across!

Marie's first pedicure! And Josie modeling the nail polish Paige got her, thanks guys!

As always, thrilled with themselves...

The tent... Marie pulling Josie's hair. Proof that she is not quite as sweet and innocent as she would have you believe!

Chillin'. In case you're trying to read it the onesie says "B is for Bob". Marley that is:) It's one of my favorite onesies!

Her Faith...

So, this week I have repeatedly been smacked upside the head with the story of the woman who bled for 12 years. The woman who's faith was so great that in the act of simply clutching at her Savior's robe she was healed.

What an amazing thing. I didn't pay attention to the story the first few times, I'd skim through, note the reference, and move on with my day. Then tonight, I'm sitting here nursing Marie to sleep (she's up late, still trying to cut that tooth) and I glanced at my "verse of the day".


Just then a woman who had been subject to bleeding for twelve years came up behind him and touched the edge of his cloak. She said to herself, "If I only touch his cloak, I will be healed." Jesus turned and saw her. "Take heart, daughter," he said, "your faith has healed you." And the woman was healed from that moment. - Matthew 9:20-22 NIV

Praise God. I'm listening. I read the story. This woman, her faith is enviable. She bled for 12 years, she was penniless having spent all her money in search of a cure, she was shunned by everyone who knew her. Alone, lost, poor, and still, STILL she didn't loose her faith. She BELIEVED, she loved her Lord and her Savior so that all she had to do was brush her fingers against His robe and her faith healed her.

I'll be honest. I am a little jealous of that woman. I want a faith like that, I want to believe so fiercely that there is no room for doubt, that all my suffering, all the worry can just be lifted. Sometimes, I'm sort of jealous of all those people in the New Testament. I would have so loved to be alive when Jesus was. Can you imagine, just to hear Him speak. Just to be near Him, to see Him. I don't believe He looked anything like the pictures, I cannot wait to see His face...

Back to the woman, she went through all of this trial and tribulation, for 12 years! She must have hurt so badly, I'm sure she felt like she had been abandoned. And still, she believed, and her faith healed her. I wish that I could reach out and I could somehow rub Jesus' robe across Marie's face. I've no doubt that my sweet baby girl has that kind of faith, the faith I envy and ache for. I know, I know that He can heal her. I've been asked before if we pray for miracles. We do, but yet, the hope for a miracle is sometimes too much to bear.

So, Lord I've listened. I read the story. I feel for that woman, how elated she must have been. The peace that washed over her in the moment that Jesus said, "Daughter, you faith has made you well. Go in peace. Your suffering is over." Mark 5:34. It must have been a rush of calm, it must have felt so good. The way that you feel when you sink into bed after a long day, the way it feels when someone you love hugs you, can you imagine?

I want that. I want that so badly. Not for me, but for Marie. I know it will happen someday, just not in the way that I would like. Still, this story was what I needed. This week, I've been feeling adrift. I know that God is near, but I have not actually felt Him. Then tonight, when I'm grumping it up, tired and nursing, cranky about this and that, feeling sorry for myself and all of it petty, there He is. I love it when He lines things up like this, when I cannot ignore any longer that He is here. The story of the woman lets me know that I'm not alone, He is here, my Savior lives, my God is everything, and He loves us all more than I can even understand.

Finally my baby is sleeping, I'm off to bed with her. **I read through this again this morning, and it makes it sound like I have it far more together than I actually do (that is not an accurate representation of me. I'm sort of a wreck on any given day). Last night was a good reminder, and I needed it again this morning because I woke up fed-up and grumpy. I need to be reminded often, it is so easy for me to bog down and go astray.**

...Said Jesus. "Everything is possible for the one who believes." Mark 9:23

Random unloading...

I'm feeling good about things. Marie is a happy girl, Josie is a mostly happy girl (with the exception of a lot of whining, I'm trying to ignore that). Daddy is a happy man, he's grumpy that the millet's not ready to harvest, but seriously, that stuff is for the birds anyway! (that was incredibly clever, if you don't know why Google uses for millet and you'll get it ;)!)

That said, I'm tired. Marie's still working on that tooth and has been up late lately. Last night we went to bed at 10:30 but it wasn't early enough for me. I don't know why I'm so sleepy, it's annoying.

I feel like life is normal though. Hearing that Rie's heart is healthy sort of lifted a weight, we can really enjoy and not feel like the bottom is going to fall out (maybe?). I think we've been living like that for a long time, as though the bottom is going to drop out from underneath us at any moment. That gets old!

We're thinking we might actually take a weekend away, maybe just to Denver to the Butterfly Pavilion or the Aquarium (farming permitting). We have not had thoughts like that in nearly a year. Every time I have left the wheat fields since last October is because someone had a doctor appointment in another town, or we had to go to the accountant (though I did my best to get out of that). The one exception is when we went to the carnival the other night, and that was only 30 miles away and we were only there maybe three hours. I feel like a kid on Christmas morning at the prospect of a weekend away!

Speaking of going away, did you know that Make A Wish does not grant wishes to kids under two and a half? Our hospice nurse emailed asking if there are ever exceptions, but, we had wanted to maybe take a trip to Give Kids the World. The only way you can get to that attraction is through Make A Wish, you can't just to to Florida and reserve a room there. It's annoying. Do they think that if you're not two and a half you don't have any wishes? If that's the case they should meet my God-daughter Nicole. She is just creeping up on two and a half and she will list her wishes off to you, probably at the top of her lungs. These wishes aren't new.

It ticks me off a little bit that they do that. Then again, if we could go I'd probably be nervous as heck about it.

Life has been good though, so good, I made pizza from scratch for the first time in a long time. It was so good, and Josie had a blast doing it with me. I grew up eating pizza from scratch, and when we were first married and I couldn't cook a grilled cheese (I still can't by the way, I always burn them) one of the first meals I made Luke was pizza. I was all geeked out this time because I found a recipe for the crust that doesn't require tons of rising:) So, I'll leave you with that.

Thank you all so much for praying for us on Monday about Marie's little heart, those prayers were answered!

WHOLE WHEAT AND HONEY PIZZA DOUGH (you know, to support your local wheat farmers *wink*wink*)

INGREDIENTS

• 1 (.25 ounce) package active dry yeast
• 1 cup warm water
• 2 cups whole wheat flour
• 1/4 cup wheat germ (I didn't use any. I don't know if you can even buy that here, but I definitely don't have wheat germ just lying around. Check that, maybe I do. I could go out to the farm and get some from the bins I suppose, but that just seems like more work than I want to do.)
  
• 1 teaspoon salt
• 1 tablespoon honey

DIRECTIONS

1. Preheat oven to 400 degrees F.
2. In a small bowl, dissolve yeast in warm water. Let stand until creamy, about 10 minutes.
3. In a large bowl combine flour, wheat germ and salt. Make a well in the middle and add honey and yeast mixture. Stir well to combine. Cover and set in a warm place to rise for a few minutes.
4. Roll dough on a floured pizza pan and poke a few holes in it with a fork Add toppings.
5. Bake in preheated oven for 15 minutes, or until desired crispiness is achieved.

Best eaten with salad and cold beer, but then that's just me;)

Cardiology tomorrow

Tomorrow Marie has a routine cardiology appointment. She will have an EKG and echo cardiogram. Please pray that her results are all normal and she doesn't pick up any bugs while we're down at the hospital.

We'll be back home tomorrow evening so I'll update the Caring Bridge with results once we have them.

Thank you all for taking Marie into your hearts, I've received the nicest cards and phone calls, plus a visit from a good friend this week and I am truly touched by how many people pray for and care about Marie. She is doing so good right now, and I've no doubt that is prayer at work!

The last few days have been busy one's here at our house. Friday we got a visit from Tami and Paige and it was so good to spend time with them. It was wonderful watching Josie and Paige play, and nice to watch Tami enjoying loving all over Marie. I have some pictures to post sometime too... probably later this week :)

Much love-

I want to remember...

The face Marie makes when she doesn't like a food...

How brown her little knees are after a summer in the sun...

How she sounds like a kitten when she "talks"...

That she can wiggle her ears...

Her overbite (it's really bad, but totally endearing)...

That Josie say's "smarshmallows" and "frig-i-gator"...

That Marie is an early riser and Josie is my sleep in girl...

How big Rie's smiles are first thing in the morning, it's like she's always surprised and thrilled that I'm right there...

That Marie will start begging, with her little bird mouth, the moment dessert is brought to the table. She just knows sweets happen after dinner, and regardless of whats in that bowl, she wants some!

How Marie reacts more to Josie than anyone else. Josie gets bigger smiles, louder coo's, Marie loves her sister so much!

Sweet days.

Things are still going well here. This week has been busy, and next week will be worse. Next Monday we have to take Marie down to Children's Hospital for her Cardiology appointments. She is getting an echo cardiogram and EKG. We are not looking forward to it, especially having her in the hospital. I'll have to find a mask for her somewhere... we're praying that it goes well and her heart is still "just fine", and that we don't pick up any bugs while we're there.

Josie is getting really excited for preschool. Her first day will be September 3. She's looking forward to soccer starting, and got new school clothes this week. She got too tall for just about everything over the summer, I can't believe how big she's getting!

As for me, somehow I'm still all over the place. Luke and I were talking last night. Because of GOD'S GRACE Marie is doing well now, but for us this is a time to decompress. To feel, to fear, to be grateful, to cry, to laugh and to take pictures. Because I am not in "crisis management mode" I find myself more vulnerable right now. Little things are more upsetting, but at the same time I am so happy, thrilled to see her do well. It's just the way it is I suppose.

I've been thinking a lot lately, about how life has changed. Maybe it's because October is nearing, and that is the month that last year, our world turned upside down. I feel God at work, I actually feel Him near me now. I never did before. Lately, I've been praying not so much for things, but just for my heart to be opened.

Because Marie is stable as she can be right now, this is the time for me to do some healing. I'm praying that my heart can be open, that Jesus will enter and heal the broken parts. That I can be filled with love and light, and I am able to live my life as God would like me to.

My evening devotion last night talked about the words that leave our mouths, and how if they are empty they do nothing. But if they are full, if we submit and allow our mouths to speak the words of God then our words will leave us doing good work. They explained that that is what the great men of the Bible did. John the Baptist submitted to the Lord, allowing the Lord to speak through him. What a beautiful idea.

I hope that the words that leave my mouth are His, I hope that I can be used for that purpose. It was really food for thought. Now after all this, don't ask me what verse my devotion was talking about. I am so bad at that! It's okay, I'm a work in progress ;)

I'll leave with this, a quote I found on a caring bridge page that I visit. This beautiful family lost their baby girl to Leigh's in January 2008, she was so much like Marie.

Fr. Benedict Groeschel: 'The most bitterly disappointed people are those who thought that this brief, fragile life was going to bring them the joy reserved for the blessed in heaven".

We have a lot to look forward to.

All over the place...

This week has been tough, though I can't say why, and I feel guilty for even feeling that way since Marie has really been doing phenomenally well lately. I guess, maybe because she is doing so well I can sort of "let down" and allow myself to deal with some things.

It started the other day when I had to go through the girls things and put away what no longer fits. That is a pretty ordinary, mundane chore. One I had been putting off for over a month. I sorted through Josie's things, she was patient and tried on all sorts of things from last winter to see if they still fit. Then, I moved on to Marie drawers. What can I say about that? Most of her t shirts were put away. Because of the tube she can only wear onesies. I put away her tiny jeans, they're just not comfortable for her anymore. I put away a long sleeved t shirt I bought before she got sick. It was green and said on the front "When I grow up...." below are pictures of astronauts, doctors, ballerinas, etc... It has been too painful for me to even put that shirt on her since October.

There are her tiny converse, hot pink. I bought them because they were too cool to pass up, but I honestly pictured her running around in them one day, perhaps in a tutu. I have a picture of Josie like that, Tinkerbell with lime green converse. I love that picture. Anyway, some dreams die hard.

There is a t shirt that is brown, it has pink and blue waves on the front and says "Dad's Surfer Girl". There is one in 6-9 months, one in 5t. They wore them last summer for Father's Day. I dressed them up and surprised Luke with "Team Daddy". I love those t shirts. I did not put that one away. It is on the top of the pile, there more for Mommy. That is a happy memory, one too good to put in a box in my basement.

I don't know why going through her clothes was so emotional. Maybe it was because there are a lot of memories there. Most days I'm okay, but there are times when it is really hard not to grieve the baby she was before she got sick. Then I look at her, and mentally slap myself across the face. She is beautiful, she is absolutely perfect, she has a smile that is infectious, and even though I never hear her laugh her eyes do. Even though she doesn't cry I know when she needs me, she is God given, and I am grateful to have her. This is such a roller coaster ride.

Even on the saddest days, there are bright spots. Josie is into Hannah Montana suddenly. Where that came from I don't know, but she gives me her best diva impression and sends me laughing through my tears. She's this bizarre cross between Hannah, Fancy Nancy, and Dennis the Menis. Seriously.

Yesterday was beautiful. We were out enjoying the back yard, and the pictures below are from that.

I hope that no one reads these posts and feels bad for me, really I have it pretty good. I have two beautiful girls, my husband provides for us so that I can stay home with them every day. I have a long list of things to be grateful for. Sometimes, this is just a place for me to vent the things that bother me so they're not here, weighing on my heart.

I hope everyone has a wonderful weekend!

Updates!

Wow! The last week flew by, it was busy! Marie is still doing great:) Our hospice nurse Barb was back from vacation and checked her yesterday. Lungs clear, heart sounds good, and Barb confirmed something that I've been seeing. Marie is sooo much more alert!

She's making faces, grabbing at toys, and overall showing more emotion. She actually got annoyed with her sister the other day (Praise God!). Who'd have ever thought I'd be happy about my girls not getting along? Josie was in her face and Marie finally had enough and scowled then tried to pull her hair. She also made this angry little grunting sound. Definitely nice to see her really interacting.

Josie had another re-check on her ears yesterday. Since her surgery in April she's done really well and got a clean bill of health this time. Now, all we need to do is pass the hearing test they'll give her at the beginning of September with preschool and we'll be out of the woods. They also did say that the scarring in her ear lobes won't interfere with getting her ears pierced so, hooray! Now we just have to work on Daddy :)

Josie is really looking forward to soccer starting again in September. I hope that she enjoys it more than she did in the spring. I have repeatedly asked her if she would like to play, and every time I'm met with a very enthusiastic "yes" so we'll go ahead and sign her up.

I think that's really all the news here for now. Below, please enjoy some photos from Josie's gymnastics recital which was last Tuesday. She was in the 4-6 age class and for only doing it two months she was so good! All the kids were, it was tons of fun to watch. Once again, thank you Kathy for emailing me these photos, I didn't take any as I was busy with the camcorder the entire time!

Tumbling

Tada!!!

Running to the springboard to get on the pommel horse (?) I have no idea really what it's all called;)

Balance Beam

191th post...

Crazy huh? I cannot believe I have 190 posts on this blog to my name. 180 entries of our life, our thoughts, our hopes and fears. A large portion are from "after".

I can divide my life into two parts. Before, before we knew Marie was sick. Back then I was more carefree, I laughed easier, I thought of the future, I grew bored with my life sometimes. Before, I was not so patient, I looked more rested. Before, I had time to go to the gym. I thought about going to concerts, going on vacation. Before, my biggest fear was loosing a child. Before, Luke and I fought about stupid things. Before, I cleaned my house more. Before, I freaked out if toys were all over the place. Before, I didn't know God as well.

Now, in the after. As in, after Marie was diagnosed. After, I worry more, but I appreciate more. I don't get bored with my life anymore, rather, I'm thankful for days that are a little dull. After, I have more patience, and I've learned I am stronger than I would have ever believed. After, I am more confident in myself, and my ability to be a mother. I am more tired. After, I don't go to the gym, I do yoga with Josie and count it as working out! After, I don't care much about the outside world. My life is lived in moments, and you cannot believe how sweet the good moments are. After... my biggest fear is having my child suffer for a long time. After, Luke and I are closer now than we ever have been. We don't fight about much anymore, and never stupid things. After, my house is a mess sometimes but it is a comfortable house. Toys all over the place means we've been having fun. Now, I know my God and Savior so much better, and I ache to know Him better still.

So, most of my posts are from after. I think that in a way, my life is fuller and better now than it was before. I know what matters, I know who matters. I know who my friends really are and I treasure the old ones that I still have with me. I also feel so blessed to have my new friends, people that are recent additions.

So, in honor of my 180th post, here are 20 things I betcha didn't know about me!

1. I am terrified of my basement at night. It's irrational, but I am convinced people are hiding down there just waiting to get me.

2. Nothing grosses me out more than stinky dishrags and musty towels.

3. Nothing more than hair anyway. I cannot stand stray hairs.

4. I have stretch marks. They are crazy bad and go from the top of my thighs all the way up. I think it's okay, I get tan enough I don't think you can notice. I call them tiger stripes.

5. My favorite food is lasagna made with bread and eggplant instead of noodles. I cannot get enough.

6. I get dorky excited about trying new recipes.

7. I would like to be sophisticated and know about wine, which ones are good, and go with what. However, at the end of the day I am a beer girl. Give me a nice cold one and a bowl of pretzels and I'm happy.

8. I love my hair color, it's all natural. I'm a little vain about it. It gets darker every time I get pregnant, and the older I get the more bizarre curly hairs I have throughout. By the time I go grey there's a chance I might look like Einstein.

9. I weigh more than everyone thinks I do. Luckily, at 5' 10" I can pull it off.

10. I have really big feet. Size 11 actually. Luke and I can wear each other's shoes.

11. I don't like gold jewellery. Only silver, I don't know why.

12. My middle name is Allison. My mother's middle name is Allison. It's after my Grandfather, who's middle name was Allen. That makes my initals SAS, Luke say's its fitting because I can be a little sassy.

13. Green is my favorite color, but I like blue and yellow just as much.

14. I knew Luke for 3 years before I even gave him a second thought. All that time he patiently kept trying to get me to talk to him.

15. My brother is nicknamed Mickey. When my sisters and I were younger we would torment him and sing "Hey Mickey you're so fine, you're so fine you blow my mind, Hey Mickey!"

16. Rockey Road is my favorite kind of ice cream.

17. I am terrified of wasps.

18. If Josie was a boy we would have named her Jeffrey Allen. If Marie was a boy her name would have been Waylon James.

19. My favorite song is "Coming Home to You" by Robert Earl Keen. A close second is "Flowers" by Cross Canadian Ragweed (it's the song Luke and I danced to at our wedding).

20. I don't drink pop except for special occasions, and then, only sprite.

Hopefully a break from the heat!

It's been hot this week, too hot! The girls have been inside the whole time, it's just too hot for Marie. So, we got bored, then we got cranky, then we got bored again. Then, Mommy pulled all the scarves out of her closet! Party:) Josie had a blast the other night dressing up in every scarf I own, and then covering Marie with them. Silly girls!

Marie was actually a little less than thrilled about this...

Diva!

Daddy loves this t shirt!

So proud.

Warning, parts of this post are politically incorrect.

I had to share. My Josie is getting so big. She makes me proud of her in so many ways. Tonight, for fun we had Ghetto S'mores after dinner. What is that you may ask? Just a s'more, only we toast the "smarshmellows" over the gas burner on the stove in the kitchen (according to Luke and Hazen's joke this is how they make s'mores in the ghetto). Josie loved it.

While munching her s'more, and talking about how God really got it right when he invented them, she stopped suddenly and looked at me. She smiled and said "I know I can't see God but he's right here next to me". I am so proud of her, when did she get so wise?

Funny things Josie says...

I don't want to forget these!

At our grocery store we have discovered you can get these completely awesome temporary tattoos for only 50 cents! So, we buy them every time we go now. Luke told me I was going to turn Josie into a deviant. She looked at him and said, "I'm not a D-viant, I'm a C-viant!".

"You're clever Mommy, almost as clever as my Uncle Mickey". That's sayin' somethin' there!

"Mommy, when you get little like me you'll be able to wear that nightgown."

Out of the blue Josie told me, "When I grow up and I am the Mommy, I'll marry Daddy and take good care of you."

At our house we do vegetables on the grill. I make foil packets and put a little butter on the veggies with a little salt and pepper and let the grill do the work. The other night, I forgot I had put broccoli on and it got a little toasted to say the least. I thought we could still manage to eat it so I put it on plates. Josie thought otherwise. "Mom, somethings wrong with this broccoli. Look at it, it's not even green anymore. I think it caught on fire." It did.

Tuesday Josie stayed with at Andrea and Hazen's with Nicole. For dinner Andrea made salmon patties and Josie ate them! She told me, "Andrea is a good cooker Mommy, I like everything she cooks because she made it, not you." At least she's honest. That, and food always tastes better at someone else's house.