A few more...

Finally... ballet and more!

In no particular order...

Daddy's Girl

Beautiful butterfly girls...
Dance!
Head in the clouds...


Sweet Marie...
Ballerina!
My favorite photo from that day.
Josie is on the far left right next to the instructor.

More Daddy time...

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

Happy Birthday Landon!!!

My friend Tami's little boy Landon is 1 today! He and Marie both have Leigh's, and their first year has been a whirlwind. Landon is one today though, and if there was ever cause for celebration that is it!

Happy birthday beautiful boy, thank you for letting us share in your life!

I love Barenaked Ladies. They make me think of college, when I drank too much beer, and mostly had a lot of fun. Now they do kids music which makes them rock even more I think! Check it out, this is fantastic:)

Names...

I'm fascinated with them. When I was pregnant, my favorite thing was picking out the girls names. Each one was so thought out. I'm also fascinated by what names mean...

Josephine: Hebrew origin, meaning "He will enlarge".
Ann: Hebrew origin, meaning "Grace; favour".

Marie: Hebrew origin, form of Mary. Meaning "Wished for child; rebellion; bitter"
Isabel: Hebrew origin, meaning "My God is a vow".

We did not intentionally choose names of Hebrew origin for the girls, but it ended up that all the names started there. I think their names definitely fit them.

Regular days...

This weekend was a regular weekend. By that, I mean we hung out. Saturday we were a lazy family, we didn't do chores, we took our girls to the park. Just like other people. I pulled Josie in the wagon, Luke pushed Marie in the stroller and we just went to the park. I sat and nursed Marie while Luke and Josie played. While I sat and watched I saw the wind blowing the grass, I saw a butterfly, I saw the clouds move in a sky that was so perfectly blue it matched the color of my babies eyes. We just were. There were no thoughts of feeding tubes, medicines, emotional turmoil, seizures, none of that. I sat and breathed in the air, and I am so grateful for the moment.

Yesterday, Luke and his cousin went to see the Rockies playing in Denver. They flew in his cousin's plane, and Luke had a great time. Josie, Marie and I did more bumming around. After I picked Josie up from Sunday school we came home and played, then went and got Subway for lunch. Sort of a luxury, I don't like to take Marie out much so Josie was excited. She got tuna, she loves tuna.

In the evening we went to Josie's friend Aidyn's 5th birthday party. He is the most handsome little boy, and he has the sweetest way about him. Not all the time, he is after all, all boy. But, there is something very sweet about Aidyn, he is a wonderful kid. Josie had a blast, and Marie enjoyed herself too.

It was nice to just hang out, again, a little vacation from day to day worries. It was so nice to watch Aidyn's mom Christy love on Marie. Christy is one of the best moms I know, and I adore how she is with Marie. Just as though she were any other baby, it's all cuddles and kisses. It feels so good for me to watch. Christy sees the beauty in Marie, just like I do. The wiggles of her fingers, the out of controll-ness of her hair, her little eyes watching streamers. I love watching her enjoy Marie, and I'm grateful for my friend.

As Marie gets bigger, it's sometimes hard for me. Because sometimes when others see her, I think it is apparent that there is something different about my girl. I've been asked a few times, while out and about, how old is she? When I say, nearly 15 months, I see shock on some faces. I know they must think her so much younger. It is inevitable that this will happen. That said, I am so happy to say "almost 15 months". There's some victory in that.

I am grateful we live in a small town. Here, Marie is just how Marie should be. People see her, they know her story, she is just how God meant her to be. No one questions, few ask. I am grateful to them, because it is hard to see that flash of what strangers see through their eyes.

Luke is outside planting a garden. I fought this idea, I'm afraid it will be too much work. He says we need to go on living as we normally would. He's right, as always.

A lot of people have told me they think I'm strong, that I cope so well, that I'm an inspiration. I don't think any of us can comprehend the mess I would be without my husband. My Luke is something special. He is so, so good. He loves all of his girls so well, and he listens to me; he repeatedly astounds me in that he just gets me. He is the place I run to, he's my refuge in the storm. He picks me up when I fall, he has the strongest faith, he pushes me when I need it, he comforts me when I have nothing left. In reading over this, I realize I am very luck to have two people in my life who are like this. The first is Luke, the second, my Father.

Without Luke, I could not be who I am. I am pretty blessed to have him. I see now why God put us together. He knew we'd need one another.

So many have people have told me how I inspire them, which is nice, but I have to admit, I don't think I'm that inspirational at all. I know so many other mothers who would do just what I do if they were in the same spot. Still, when you think of me, I hope that you all realize I'm only half of a whole, and my husband Luke is the one who inspires me.

Caring Bridge update

Ugh. We talked with Marie's metabolic doctor last night.
She called because we had asked them some questions, namely about trying the Ketogenic Diet for Marie's seizures, and secondly, what about her funky GI issues.
Regarding the ketogenic diet, apparently it is not as bad for Marie as we had thought. There is a theoretical possibility that the diet could provide Marie with more energy, the ketones could "feed" her brain, allowing her to be more alert. It could possibly cause slight improvment. On the other hand, if her body doesn't take it well it could be very dangerous and we'd have to stop breastfeeding. Nursing is Marie's absolutely favorite thing in the entire world. I mean, Josie comes in a close second.
So, Luke and I talked. If you know us, you probably know what we decided. We know Marie's time is short. We want her to enjoy it and be as comfortable as possible. We will not try the ketogenic diet. In our opinion, the risks are too high and the possible gain not large enough to justify it. That, and I don't want to wean her. She likes nursing so much she squeeks and flails her arms at me when she wants to. I can't take that away from her.
The funky GI issues are another story. Marie only has BM's (bowel movements) every three days or so and she has to work really hard to make it happen. Apparently this is something the doctors see. The part of Marie's brain that controls the GI tract, heart rate and body temperature is being damaged, we are seeing the results.
We're going to try Miralax first, and then try Little Tummies stimulants to see if we can get her going every other day or so. Hopefully it helps. There's not a lot we can do, just try to treat it as best we can.
The doctor said something I've known but sort of ignored, and that is that "Marie's progression to this point has been rapid". Hard to hear out loud.
So, that was the doom and gloom. On another note, Marie has recently tried bacon, peanut butter, spagghetti O's, and steak. She liked all of them. She can only gum the solids, but really enjoys to, so that's happy. Also the last three days her seizures have been so much better. Small blessings. Shan

Rapid Progression

That's what the doctor told me last night. "Marie's progression up to this point has been rapid". This is something I've know, something I've ignored, something I've understood, something I've feared. To have it said out loud is something I'm not handling well.

She is fighting.... as hard as she can. Her bowels are slowly moving beyond her control, her eyes wander, her hands don't work like they should. I watch her intend to move something to her mouth, instead the arms straightens and she struggles, bird mouth open, but cannot get the object in. She is so proud when I pry open her fists and put things in her hands, you can see on her face.

There was also talk about trying a diet that has huge risks, but could help Marie a tiny bit. The catch is, she must be weaned. Breast milk is too high in carbs to be part of that diet. I can't do it. I won't do it. It's funny, I've never considered myself one of those gung ho, breastfeed or else mama's. I figure, whatever works for you and your baby is fine. I've often wished that Marie took a bottle, it would take the pressure off me. But, I cannot, I will not wean this child. By the grace of God, if she lives to be two, three, four, I hope that I still nurse her. It is is her hugest comfort, the one thing I can give her, I can't take it away.

I'm struggling with this, the rapid progression. I had found a place this week where she's doing okay, Josie's doing okay too. I'm feeling competent, stronger even, our life has gained a bit of a routine and I was enjoying that. Then the wave smashes over me, rapid progression. The reality of how brief time is, how I cannot take a single sigh for granted, it smacks me like a truck. I have to remember, the doctors see only the disease, the don't see the perfect little girl. The don't see how beautiful her spirit is, the don't KNOW Marie, not like I do. They don't know everything.

I also, never have been an "out there" Christian. I was never comfortable quoting scripture, I felt very uncomfortable pushing my faith on others. Luke told me he was proud of the evangelism that I do with my blog. Imagine that, then I realized, I do. I find a lot of comfort in it now, and I have to share it. Because it's how I'm coping, it cannot be left out of what I say.

My friend Mindy posted this on her blog yesterday, and the verse is soothing. Isaiah, Chapter 44:2 "Thus says the Lord who made you and formed you from the womb, who will help you, 'Do not fear, O Jacob My servant; and you Jeshurun who I have chosen." He made and formed Marie, he knew the struggles she would face and yet he trusted me with her. We'll get through this. Like I said the other day, I am not diggin' this roller coaster.

This week

This week finds us "stable". Marie hasn't had a fever in a few days, the weekend was good. Luke stayed home and Josie and I got our flowers in. I hope I didn't bite of more than I can chew, I have about 15 pots spread around... lots of watering!

Luke's Aunt Peggy and Uncle Rick were here. Aunt Peg got some precious time with Marie, it was pretty special for me to watch.

Josie's recital is Friday night at 6pm at the High School Auditorium. We're excited for that. I think it will be chaos, I really don't think she'll know her dance without the teacher in front of her doing it too, but whatever, it will be fun. Her dress is purple, she is excited to wear it.



All in all, we're doing pretty good. This disease that Marie fights definitely has it's ups and downs. Its a roller coaster, but the thing is, I've never been a roller coaster girl. I'm more of a merry go round chick....

Hope everyone has a wonderful week! Much love~

Funny Things Josie Says...

"It's amazing, like a chrysalis". What?! You're 4! I actually had to look it up to remember what a chrysalis was. It's amazing what she picks up! If you're like me, you can read up on a chrysalis here: http://en.wikipedia.org/wiki/Pupa#Chrysalis

"Eeew, please stop that". Overheard while Luke kissed me good by.

"It was a kiss, and kissing means love". Josie on her friend Max, who kissed her over a month ago (and she's still talking about it).

"I LOVE SHOES"!!!!

"Stop it Marie, stop kicking me. Mom, Marie is being MEAN"! Josie tattles now, a lot.

"My tummy hurts, I need something to make it feel better. Something like jelly beans".

"I have gloves now, so I am a real gardener!" We actually found her size gardening gloves at WalMart, not only do they fit but they are purple and have Dora the Explorer on them. They are the most awesome gardening gloves that ever were.

"Mickey is my favorite friend". Overheard while she was happy with my younger brother.

"I called him, and called him! I called him six times, why didn't he answer his phone. I AM SO MAD! I'm going to call him and ask him why he won't answer his phone". Just let that last sentence sink in. This was overheard while she was mad at Mickey. She never got hold of him that morning, and when she finally did get him in the afternoon she was so mad about his not answering in the morning she called him a Dirty Hippie and hung up on him. I think he felt bad.

"Go pour yourself some wine from the frig-i-gator!" When Josie whines (it happens a lot) Luke and I tease her and tell her we'll get her a cup to pour that "wine" out in. She now uses this response, but, it gets her to stop whining. Mostly because she's annoyed and starts yelling.

"Mom, do not sing your songs, they are not funny. They are embarrassing." She told me this last night when I was singing her a silly song. I felt a little silly....

"You know what? We don't buy enough of jelly beans".

Better day...

So far today is better, I don't feel so filled with doom and gloom. Hospice will be here this evening and I have my list of questions... Luke is done spraying too, and while he won't be home for lunch he'll be home earlier today, and that makes me happy. I hope that everyone has a wonderful day! I'm off to play Barbies:)

Tough

I am having a tough week. I don't know why. Maybe it's the reminder of how horrible, horrible, horrible Mitochondrial Disease is. Their was a little girl, Josie's age, who lost her battle with Mito this week. It is a tough reminder. Sweet Landon, who has Leigh's like Marie has been suffering so much, I hurt for him, and at the same time, it is a tough reminder.

I found a fantastic description for what Mitochondrial Disease does to a body:

WHAT IS MITO?
Imagine a major city with half its power plant shut down, at best this would cause a major black out. Now imagine your body working only to one half, the brain is impaired, vision is dim, muscles twitch and you are to weak and muscles too fatigued to walk crawl or write. Your heart is weakened and you are not able to digest your food. For a large number of people especially children this is a fatal disease.

It is vicious. When Marie was first diagnosed with Leigh's we had gone through a brief period where we actually thought she had cancer. In the early days I often wished it had been cancer. The prognosis for both is poor, but at least people UNDERSTAND cancer. I could just tell people, she has cancer. Instead, I had to give a brief science lesson on what Mitochondria are, how they function, why its bad. IT IS SO FRUSTRATING! The closest comparison I can come up with, is that it's the same as Marie having been born with a defective heart. Her cells just don't work.

She's cooing again. It's so sweet to hear, still no crying, but she coo's. Still no smiling, but I see it in her eyes. It's hard to watch her sometimes though. Every tiny squeak is something she works so hard on. Her mouth works and works, nothing comes out. She tries so hard, fists balled up, neck stretched out, and finally, a coo. WHY MUST EVERYTHING BE SO HARD FOR HER!!!!!!!!!!!!! Why does she struggle so hard to make a noise, others take that for granted. I hate it. The only thing that brings me relief is knowing that she has God and Jesus on her side. I swear, she see's them. She looks over my shoulder and talks away, to what I'm not sure. I'd like to think that she's talking to Jesus, and he's comforting her. Because, honestly, sometimes I just don't know how.

My baby, my baby, MY BABY! My babies. This is so hard on Josie too. We talked yesterday morning about heaven. Josie was afraid that when she finally gets there Marie might be gone from heaven, that she might have left for some reason and not be there anymore. I told her that once we get to heaven we stay there, we don't leave. She struggles to understand. Her Bunny is sick a lot, he has seizures, he doesn't feel good. I hate that this is her reality, but I know it's making her a stronger, more compassionate person. Josie would like to be a doctor when she grows up. She humbles me.

Tami, this is for you. I haven't posted poetry for a long time, but it sums up how I feel, and how I know you feel.

Child by Sylvia Plath

Your clear eye is the one absolutely beautiful thing.
I want to fill it with color and ducks,
The zoo of the new

Whose name you meditate --
April snowdrop, Indian pipe,
Little

Stalk without wrinkle,
Pool in which images
Should be grand and classical

Not this troublous
Wringing of hands, this dark
Ceiling without a star.

Oops

Today I gave Luke a hair cut for the first (and last) time. He thinks it's pretty horrible, I keep telling him it's not that bad. I swear, we will crack up about it in 20 years (I already am).


* This is not Luke's hair cut, his is better. I feel that's important to note!