Blessed Weekend

Our weekend went so, so well. Marie did wonderfully on Saturday. We went to a bar-b-Q with family at Luke's Dad's house on Saturday night. She did well there, eating some, rolling around in her stroller, hanging with cousin Gavin. We actually stayed out until 8:30pm and she did just fine! It was wonderful.

Sunday Marie and I skipped the 10am church service to get her a good nap and then Daddy and Josie came and got us to take us to the luncheon to celebrate Zion Lutheran Church's 100th anniversary. The meal was good (as is expected, we Lutheran girls do like to cook). Afterward we got to hear Pastor Klaus speak and it was phenomenal. His message was about how God would like us to always be moving forward, in life, in our faith, etc. It definitely hit home for Luke and I as this is a time where we would like to stop in the path, hold on to life as it is, or even look back. It was a beautiful reminder that while we at times happily, fearfully, tentatively, strongly move forward in our path that God is by our side. (I don't know if that was his intended message but that's what I took from it, something that I needed to hear at this hour of my life.) He also painted a beautiful picture of how complete is Jesus' salvation, about how he knows our sins and yet we are still forgiven, how he died for each and every one in our place. I often think, if it hurts me this much to see Marie suffer, how much more it must be hurting Jesus, when he loved her so much he died for her. He must hurt even more. What love.

It was such a beautiful service and I am so glad we had the opportunity to be there as a family to listen. If you've never heard the Lutheran Hour (Pastor Klaus' weekly program) and are interested in checking it out you can just click on those words and it will take you there.

In other news, Josie and I moved the pool and re-filled it. It's all ready to go again for tomorrow when we should be over 95 degrees here. She could live in that pool I think. The child is possibly half mermaid.

She's said a lot of funny things lately but I can't recall them all at the moment. Right now she's very excited for Uncle Mickey to come help with harvest. She said that (you guessed it) "if he doesn't come then he is a dirty hippy". He probably hates it that I share that here, he is never going to get away from that nickname.

Last weekend we went and visited some friends and their daughter who is our babysitter. Her dog had puppies and there were 10 golden retrievers bouncing around in a horse stall. So adorable! Josie loved them, but later told me "puppies are very cute but they sort of stink."

The other day she was flushing the toilet and explained to me that it worked by "magic". I asked her what kind and she really couldn't say, but it was "very powerful magic". I suppose it sort of is when you think about it....

Marie is doing very well right now, we've come to a very sunny and stable place in the path. I wish that we could stop and stay here, though I know we'll have to march on. The good times are so sweet. I find myself taking a lot of pictures these days and this week I've set the goal for myself to get them off of the camera and maybe even share a few! Her hair is getting really long, and it's getting a little lighter too.

We are definitely starting this week of on a positive note! The wheat is starting to get more golden, my girls are happy, and the weather is beautiful, really, what more could a girl want? For the moment I feel so blessed and I am thankful.

Psalms 4:7 You have filled my heart with greater joy than when their grain and new wine abound.

I Am The Child, Author Unknown

I am the child who cannot talk.

You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much ... whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards... great strides in development that you can credit yourself; I do not give you understanding as you know it. What I give you is so much more valuable... I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk.

The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child.

I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Greiving the Loss of a Child

Today I found a fantastic article on Grieving the Loss of a Child. While it is not something we've experianced yet we have gone through a stage of grieving the loss of the child we thought we should have had. It is a well written article, from the standpoint of a Christian which I think is important. I wanted to share it (and make sure I have it documented here for when I need it later).

Bittersweet...

If I could pick one word to sum up this week I think that would be it. It's been a good week, Marie has been doing well with a few exceptions. Josie's awesome as always. We played, we swam, we sat in the sun (there is a definite possibility that I am a sun-addict), it was nice.

The passing of the little boy who also had Leigh's earlier this week has left me shaken. I feel like I'm in an Indiana Jones movie, in some dark cave and the floor I'm walking on is starting to crack then fall away into some deep abyss. Unfortunately I'm not as cool as Indiana Jones. Rather than being calm and finding a path of escape I often feel terrified, frozen in place. I want to stop it or change it but I've no idea how. I'm learning that in times like this the only thing to do is pray, pray without ceasing (for some reason that phrase keeps running through my mind, I think it might be a message so I'm trying to obey as best I can).

Marie's seizures are changing again, there are fewer overall but they are becoming longer and stronger. Yesterday morning saw one that lasted 4 horrible minuets. Her entire body tightens, her arms draw in, breathing is labored, her legs sort of kick up in the air and she will grunt and squeak. I think they hurt. So, I hold her hands and tell her how good she's doing, that it's almost over, how strong and brave she is. It passes and she's tired but picks right up where she left off. Resilient does not even begin to describe this child.

Last night Marie ate quiche for the first time. She loved it. I pureed it with a little half & half, she ate a good 3 ounces! Of course, it wasn't' just any quiche. It was pretty good if I say so myself. Ham and broccoli that I had sauteed with some fresh garlic and then about 7 kinds of cheese, because, cheese falls into the sun category. I just can't get enough. I was so proud of her though.

One of the things I had missed over the last months was being able to cook. Now that Rie is doing better I am able to do more, and Josie is a fantastic helper. I love trying new recipes, playing around, making good things from leftover good things... but by far the best part is watching people enjoy what I cooked. I love the look Luke gets when he really likes something I've made, but it totally fills my heart up to see Marie eat something I made and really enjoy it. What a blessing, and I am grateful.

Just in case you were wondering, Josie helped make the quiche but refused to eat it. Had it been a hot dog or boxed mac n cheese we'd have been good to go. Maybe it was the broccoli, lately she just does not dig broccoli.

Anyway, enough rambling. This weekend will be busy, our church turns 100 years old. How crazy is that? What is crazy is that my kids are the 5th generation to attend this church. Their great-great Grandparent's went there. Now that is something. So, Happy Birthday Zion Lutheran, God's blessings to you! We'll be celebrating by getting together with family and having a Rocky Mountain Oyster Fry at Luke's dads. If you don't know what those are Google it ;)

Thank you to those who continue to pray on our behalf, and to those who pray for all the other babies suffering this disease. Thank you so much for your kindness, and for taking joy in Marie along with us. Much love-

Reality bites...

Today I was checking my email and I had a notice from a family that I had been following. Their little boy named Jasper was diagnosed with Leigh's at 4 months, and he was about to turn one. He went to heaven overnight, and it was so sudden. He just began to struggle to breath, and then he flew away.

He had been doing well, gaining weight and then in just days it all changed. It's so hard to see that family hurting, and to recognize that that is a place we are going to go.

Right now Marie is sleeping on my lap, and the knowledge that she is so fragile feels like a wall of water that is crashing over me. This hurts.... I hurt for Jasper's family, but I hurt too because this is a reminder that we are going to loose her. It's something I really try not to think about too much because, over the last months I've come to a place where I believe nothing I can do will prepare me for that day so why waste the worry, and also, I just want to enjoy her and not be sad. I want her life to be filled with love, laughter, chocolate, sunshine, swimming pools, toys, all the things that children should have. The knowlege that we will loose her is hard, but it is hard to not know what will happen. How much time, the struggle she may go through, and yet I wouldn't choose to know the date either. It's a day I dread.

It's just so hard to swallow, that a child could be there and in the next moment, they're gone. I can't imagine how the family must feel, and honestly, when I think of that time my worry is not for Marie but for Luke, Josie and I. When Marie goes to heaven I know she will run, she will dance, and it will be wonderful. I just worry about what we will do to fill the time, what will we do with all those empty hours until we see her again?

At any rate, this has hit me hard. I have asked God to allow me to carry a bit of Jasper's families grief, to help them bear the weight of that load. I ask all of you to make the same prayer yourself.

"Dear God, please let me carry a bit of Jasper's families grief on my shoulders. Please watch over them, let them feel you near them at this time. Please help them to know that during Jasper's brief life he was so loved, and that they did all that they could to make Jasper's as life wonderful and beautiful as it was. Please bring them peace. Amen."

Busy days

I haven't been in the mood to blog the last few days. Actually, that's probably not entirely accurate. I have been in the mood to sit in a lawn chair outside in the sun for as much time as possible lately. Since I don't have a laptop, I haven't been in the mood to post much.

It's really sort of funny, life sort of feels normal. Marie requires a lot of extra care but so much of it has become routine. This is just how our life is, I don't see it as different from other people really. I know that it looks more complicated, and it is, but for the most part, we have adapted.

That said, it's funny how we can be going along doing fine, but then suddenly things are not okay. I'm referring to the emotions that we seem to run through on a given day. I am happy, calm, together, then in an instant something makes me sad, crying, angry, guilty, I feel out of control, no I'm back in control, no- the entire time God was in control I just was delusional. I do a lot of deep breathing and reminding myself little things don't matter. Emotionally I am generally all over the place. And yet, I'm actually happy for a large portion of the time.

I know when I'm out and about I think people are sometimes surprised to see me smile and laugh, make jokes. I think sometimes it's assumed that I must be the saddest person. And I am, but I cannot function that way all the time. It would be miserable, and I want both my girls to experience the joy of things, so we really try to stay up-beat as much as we can. I am sad, but to dwell in it would be to totally miss out on so many things, so I try to concentrate on good.

Sometimes I fail miserably. Sometimes I yell at God for hours. Then I feel bad, guilty even, because it's like being angry or sad is wasted time, I apologize to God and try to do something fun with the girls, because that's what's really important. I feel acutely that time is short, and I have to make the best of it. I've been reading a lot, and thinking a lot, and I've hit a place where I can say "Take it God, it's to heavy for me to carry, please help". It is amazing, when I utter those words I literally feel the weight of my worries lift off my shoulders. I think that in doing that I remind myself that I am not alone, and that this is not my weight alone to carry. It is the most freeing thing.

It's so easy to say, and so easy to forget to do. I would like to think that I'll get better at remembering over time.... luckily, He is patient with me.

We set up Josie's pool in the backyard, Marie floated in there yesterday with Luke's help. She nearly fell asleep, it was the cutest thing. Josie is a daredevil, constantly splashing, shrieking, carrying on. She loves the pool :)

Luke is doing farm things. He really loves his job. We've been getting rainstorms pretty routinely here, and they're calling for thunderstorms every day this week. Hopefully all the severe weather avoids us.

Thank you to everyone who's thought of us and prayed for us lately... we appreciate it so much.

Just a reminder too, if anyone is near Estes Park this weekend head to the Estes Park Brewery for Landon's families fundraiser on Saturday!

Look at me! Say hello:)

Do I look pretty or what? Thanks to Ragan at Blogger Boutique (http://www.bloggerboutique.com/), she's responsible for all you see here. I just love it, my favorite colors, and random patterns, and for Josie, butterfly's.

That said, I was checking my stats today and noticed that I have new readers. Australia popped up in the countries listing for the first time, as did Sweden (hello Gail!). There's someone reading in Israel, someone in the UK, Las Vegas, Montana (Jackie is that you?), Tel Aviv, it is just so cool. It's also humbling to think that there are lots of people out there who take time out of their day to read whats up with us in the middle of the wheat fields. I mean, the idea that me, stay home mommy/farmer's wife is writing something that they are reading in the Middle East just blows my mind.

So, I've seen people do this before. If you've never stopped in and said hello please do, I'd love to know who's reading, and have to say, thank you for taking the time. The comments setting on this blog allows anyone to post, you don't necessarily have to have a blogger account. So, please stop in and say hello, I'd love to meet you!

Tagged

I was "tagged" by Sarah at Mommyology to fill this out, so here goes...

24 things about me...

4 places I go over and over
1. the grocery store
2. the pharmacy
3. the park
4. hmmmm, there must be more.... The Oak Tree I guess.

4 people that email me
1. Katie, my friend from Arabian Horse Association days... she lives in one of my favorite cities now, I do so love San Antonio!
2. Tami, Landon's mom. I could not get by without having her to vent to.
3. Christy, all her forwards are good.
4. My mother in law Judy, all her forwards are good too.

4 of my favorite foods
1. steak
2. ice cream
3. margaritas (they have lime in them, they are a food.)
4. sweet bread (banana nut, lemon poppy seed, any really but must be had with coffee in the morning).

4 places I would rather be right now
1. on a beach
2. laying in the sun
3. honestly, I've no idea where else. I'm pretty content right where I am.
4.

4 movies I could watch over and over
1. 50 First Dates (Josie and I love the walrus)
2. Dirty Jobs (I'm totally fascinated by almost everything he does on that show)
3. Anything on the Discovery Channel really
4. Veggie Tales (they're entertaining, and those songs are pretty catchy!)

4 People I want to learn more about... some of my newest friends :)
1. Tami
2. Michaelene
3. Danielle (Ryan's Mommy)
4. Mindy

Fundraiser for Landon's Family

There is going to be a little fundraiser for Landon's family on June 28th at the Estes Park Brewery (http://www.epbrewery.net/). One of the owners are related to Landon, and they have organized for a portion of the tips taken in that day to be donated to his family! There will be a flier for customers to pick up with information on Mitochondrial Disease (awesome!) and the UMDF.org website will be up as they'll be trying to get donations in honor of Landon as well.

I know lots of people who read this are on the front range, and some of you are even is Estes Park (Aunt Peg, Uncle Rick, nudge nudge wink wink), so I thought you might like the info to go and check it out, their beer is good (we got some for a Christmas gift a few years ago and loved it!), plus you can help out some really wonderful people. I wish we could go... Maybe I'll see what I can do, it would be lovely...

It would be wonderful to contribute to this, and raise a little awareness while drinking a decent beer (I recommend the Longs Peak Raspberry Wheat). What more could you ask for really?

A name, it's official

So, lots of blogs have names. Mine did, I called it Our Girls, because that's what it was about. Our girls, what our life was like. The thing is, I've been feeling like the title didn't suit the content.

The blog used to be just about Our Girls, but its really more about our journey. What our life is like, because I need to share it, I need to vent. I read the verse of the day this morning, and it really struck me.

"Everyone who calls on the name of the Lord will be saved." How, then, can they call on the one they have not believed in? And how can they believe in the one of whom they have not heard? And how can they hear without someone preaching to them? - Romans 10:13-14 NIV

Now, I am far from being a preacher. But, this blog has really become a chronicle of our journey. It is the story of Marie's life, and a defining portion of Luke, Josie and mine. The path we're on is not the one we had charted for ourselves, but then God probably laughed when I told him how it was going to be. What I'm trying to say is, maybe this is the reason for it all. I feel compelled to write, pushed even. Is is possible that God chose me, so that I could share Marie's story, so that I could share my own story of coming to know Him. Its something I feel that it's good to share about, becaue I think a lot of people must be like me. I'm scared, and I'm struggling to know God better. I know I need Him, that He's the one who will carry me through the rough times that are inevitably ahead. I don't preach, but I share, and I hope that others are able to walk this road with me.

I feel as though this is what I am meant to be doing, loving Marie, and sharing her story, our story. And the story is a journey. I don't know where it will take us, but I know the end destination is Home. Home with Jesus, home with our Father. Marie will beat us there, but as Luke and I explain to Josie, it's just because she's faster than we are. God needs her back. We have more work to do here before we get to go. But we're going. We're going Home someday.

So, it's official. I have named this space, it is Our Journey Home.

LUCKY

Need I say more?

I pirated these from my friend Carrie, Carrie & Shannon, thanks so much for sharing them with us!!!

Busy mind....

"Not that I speak from want; for I have learned to be content in whatever circumstances I am. I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need. I can do all things through Him who strengthens me."
Philippians 4:11-13

This is my comfort today. Somehow these words are filling, and I need that at the moment. Today Marie had her blood draw, I posted on it on her website. They stuck her 4 times in an attempt to get enough blood, and though she didn't cry the look in her eyes was terrible. It's funny, after all we've been through, blood draws still hit me the hardest. It is, I think a very basic thing. The blood is needed because somethings wrong. Somethings wrong.

You'd think that eventually I'd wrap my mind around that, but most of the time I'm just busy doing what Mommy's do. I don't focus on the differences between Josie and Marie. I actually think more about how Marie could do everything Josie can do, she'll just need a little more help from me. So, on days when we need tests done it is a very harsh wake up that somethings wrong.

But, I don't look at Marie and see wrong. She is just as she was meant to be, I know I say it all the time, but she is absolutely perfect. I just hate seeing her hurt, I hate that she has to go through all of this, and yet I know it is necessary.

Josie has been asking a lot of questions about Heaven lately too. They're hard to answer, I'm not an authority. I told her that she should ask God some of them, that I just don't know the answer, but I know it's a wonderful place. She's beginning to understand, it's just so abstract. There are moments when I struggle with the idea of what it could be like.

It's a long road we're on. Luckily we have so many people to walk it with us, but sometimes it just makes me tired. Like today, a yucky, yucky, blood draw day.

Good times

We had a fantastic weekend. Marie ate like a champ, slept will and had minimal seizures. She was wonderful and it was only made better by our friends Shannon and Carrie coming to visit with their girls Savannah and Riley. We LOVED having you guys here!

It was so nice to take the time to enjoy visiting, the nice weather, and mostly to just grateful for all the good things we have. It was the most enjoyable weekend we've had in a long time.




This week will be pretty quiet I think. Josie got a new bike so we're going to put that together, and Marie has her blood test on Wednesday. Hopefully that goes alright... Right now we're just thrilled she's doing as good as she has been, considering. Marie didn't sleep the best last night but she woke up with a new tooth this morning (just to the right of her top middle teeth) and so I think it's allowed. Fussy like a normal kid, I can so handle that!

Much love- Shan, Luke & the girls

Thank you so much to the Women of Zion and other ladies who have helped out over the last months with dinners. Luke and I have appreciated it so much, we are so grateful to have such a good support system. Thank you all!

Can I get an Amen?

Sooo nervous about taking Marie off meds... praying that this is the best decision. Luke and I sometimes over think things (obsess may be a more accurate description). Praying that we make the right choices, that our goal of taking the best care we can of our precious baby is met.

Josie started gymnastics, SHE LOVES IT! She also has been fishing to get her ears pierced, let me know that her bedroom is not "fancy" enough, and is generally being my streak of light and sound. Thank God for Josie, she is something so unbelievably special. I look at her sometimes and am blown away, who could have conceived a person like her? She is so headstrong, independent, fierce, confident, her faith is so complete, it is awe inspiring. I am so blessed with my daughters.

Have a wonderful weekend! We will have company and we're looking forward to that:) Much love!

I am enjoying being able to cook more now, I'm enjoying the nicer weather. It is nice to be able to put Marie in her sling and go to the grocery store with her now. Aside from her odd electrolyte levels Marie is doing pretty well right now and I'm just treasuring this time. I know it won't last, so that makes it important that I enjoy every moment...

So, that's where we are this week. For every good thing we seem to gain a bad one. Hopefully it all balances out soon, when I feel stressed I keep trying to remind myslef, "Let the lovin' take ahold"... My Lord loves me, and he is with me. I've been trying to just talk to Him when I feel troubled, and there are times when He talks back. I am so, so grateful to Him. I've prayed that our relationship grow stronger, because I know I need that more than anything else.

The righteous cry, and the LORD heareth, and delivereth them out of all their troubles. The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit. - Psalms 34:17,18