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!

New Pictures!!! (please check out my previous entry for information about Take Steps for Crohn's and Colitis)

I finally downloaded pictures from my camera, I still have a lot on the handy cam though. Here are my favorites from this batch! Hopefully I stay motivated and get the handy cam downloaded sometime this week...

This morning Marie STILL has a fever, and is sleeping a lot. I'm tempted to say that she and Josie have some sort of bug, especially since their cousin Nicole is showing some of the same symptoms. Ugh! Marie was at 100.7 this morning and Tylenol didn't bring it down so she's now had some Motrin as well. Josie didn't feel good for soccer practice last night so I brought her home and she fell asleep on the couch at 6:45. She slept from then on, Daddy put her to bed, and she wasn't up until 7:30 or so this morning. She's laying on the couch watching cartoons right now, being a bit of a drama queen so I think somethings up...
I will be needing one of these after all this is over with! Enjoy the pics!!!

Hanging out in Josie's bed. Marie just lights up for Josie, she definitely loves her sister!
We love the kooky glasses! Thanks Charlee, Matt, Max and Ben!

Posing on the front steps :)
We got new sun hats for this year, Josie is blue plaid and Marie is funky pink flowers...
Watching cartoons...
Standing up big. This is one of the last times Marie was able to bear any weight on her legs. Doing so seems to trigger some of the more severe seizures so we've stopped now.

Josie still looks like a baby when she's sleeping...

On of her last smiles, I'm so grateful to have caught it on film.

My Cousin

My cousin is a brave, brave girl. She' actually the toughest chick I know. And, she's doing something completely awesome.

Renee is raising money through the Crohns & Colitis Foundation of America by doing a walk at the zoo in Denver this Saturday. She suffers from Crohns and is being so open about how this has affected her life. Rather than taking it lying down she's doing something, and raising money to try to find a cure. See, she rocks.

If you would head over here: http://www.active.com/donate/takestepsDN07/RCampbe389 to see what it's all about. If you can, make a donation to help her in her cause. Her goal is $1000 and I think that we could totally help her meet it!

So, Luke is back out in the field today. All the rain/snow and then nice warm sun means he's fighting weeds... the thing that sucks about when he's spraying is that he doesn't come home for lunch with us, so it's just me and the girls all day. That does sound a little spoiled doesn't it? I'm so used to him coming home for lunch that we miss him when he doesn't:)

Marie had her EEG yesterday, I posted about it on the CaringBridge site. I've got mixed feelings about it. On one hand, I feel like it was a waste of time. She had no seizures during the test, so I feel like we drug her to Denver for no reason, and the meeting we had with the neurologist basically was something I could have done in a phone call. Blegh. On the other hand, she didn't have any seizures all morning, which is a good thing. The neuro said her brain waves are "nearly normal". Yeah, and shes "almost a decent doctor". Almost. Did I mention I don't care for our Neuro? We switched as of yesterday, it's official. Don't let the door hit you on the way out :)

Our new neurologist was good when we were inpatient way back in the day, back in October when life was still relatively calm, I didn't cry daily, and I didn't understand the full scope of the impact that this would have on our life. I was so naive. Anyway, he's cool. He's efficient, seems to be pro-active, and he does outpatient about 40 miles from here, so hopefully NO MORE DENVER!

I so want to be done with Denver and Children's Hospital and all of it. I have complete confidence in our doctors here and I feel good about them taking care of Marie. That and we have hospice, and our hospice nurse is a gem. She is really one among a million and I am so glad we have her.

Other than Luke spraying not a lot going on here, I have laundry to do. It is the bane of my existence. Someday when I grow up and am rich I will hire someone to do all my laundry. Not the cleaning, because they wouldn't do it the way I want it done, but definitely the laundry.

Also, I will be monitoring Marie, who is running a low grade fever. We are praying that this is nothing, but with her it's hard not to worry about the tiniest things. Please pray that this is just her top teeth trying to break through and nothing more serious. I can tell that its affecting her a little, she's already had at least 5 seizures this morning, so hopefully its nothing and it passes quickly.

I'll keep everyone updated! Much love- Shan

Prayer request...

Good morning everyone. I wanted to ask you all for prayers. There's a little boy named Landon who is 3 months younger than Marie (making him 11 months old) and he also is fighting Leigh's Disease.

Landon is having a tough time, he has seizures like Marie and his family is struggling as we are to get them under control. Little Landon is the sweetest boy I have seen, and his family are wonderful people, and have become so important to Luke and I as we are so grateful to have them to travel down this bumpy road with us.

If you all could, please say a prayer for Landon that his meds work, and that he's more comfortable and content. Say a prayer for his parents too, as I know that this can be so draining.



Thank you all so much, for your prayers for Landon and your continued prayers for us! It is the most comforting thing to imagine when times are hard the sheer number of prayers that circle us.

Home Again

Josie's surgery went just fine! She did great, they did take her adenoids out because they were huge, and she was a little nauseous from the anesthesia but other than that, no problems.

It's snowing here today and I'm wondering when spring will show up. Marie did great with the trip to the front range, hopefully we can get some answers next week from yet another EEG. I'm getting tired of the doctors.

Luke is home today, so I'm going to clean the house and I think we'll have the family sausage and mac'n'cheese for dinner (me cook! I know, craziness).

I just wanted to let everyone know Josie's ear tube removal surgery went great and she's doing pretty good.

I'll leave you with some crab-apple blossoms, to celebrate my tree blooming:) These aren't mine, mine look a lot rougher than this all beaten by the snow and wind. I did brave it this morning in my pj's to cut some branches which are now in a vase in the dining room so that we can enjoy the flowers a little bit.... this is May.. what the heck. Anyway, enjoy:) They are so pretty! Have a great weekend~

The need to feel...

Today I am posting a video. It's a video about another families tragedy, but it echos our own words and thoughts so strongly. I have to thank my friend Sarah for posting it on her blog.... blown away am I....

The video was made by the group Selah (a Christian band) and the lead singer and his wife have recently lost a baby, they have amazing faith though... it's really something. While what we are dealing with is somewhat different the words of their song for their daughter are words I have thought in my head for Marie... It is a beautiful way to illustrate how it feels to cope with the hardest thing I have encountered in my life. If you like, you can read their story here: http://audreycaroline.blogspot.com/.

It's hard to watch, I cried all the way through, but in some ways it's good to feel it. It's good to feel that firstly, we are not alone. Secondly, it reminds me that I am never alone. Thirdly, it reminds me to be glad that I got Marie. Sometimes, we just get wrapped up. This is now our normal, some days the knowledge that I am going to loose her is so far away, it's foreign land. I notice it at night when she's breathing next to me. The thought that someday she won't be there enters my head and it's so odd, to imagine life without Marie is impossible. She is so perfect, so beautiful, such a joy to be around and care for it is hard for me to acknowledge sometimes that her body is not made to last. Then there are other times when the earth literally moves beneath my feet, I look at her and she's almost translucent. It's like she's halfway to heaven already on really bad days.

Anyway, the video is good. We need to feel.

Secondly, I want to thank all of our family who reads this blog. All of our friends to. It's my therapy, but it is so good to have you all knowing whats going on. That way we can just pick up when we see one another, no need to give you the back story. A lot of my family who reads this blog is family I haven't seen since I was a child. Thank you for reading, thank you for caring after all these years. I will refer to you all collectively "The Irishmen". I am so touched by your willingness to love my girl though you've never met her. Thank you. To my cousin Maria, whom I have never met, thank you too. It feels so good to be surrounded by family, it's something that often was not a part of my life and I am so grateful to have that now. Finally, my cousin Renee, you know :) I am so glad I have you!

Here is the video, please enjoy... I'm grateful to this family for having the strength to share their story, to help me along with my own journey.





I Will Carry You

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One whose chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says...

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One whose chosen Me
To carry you

Another week gone! I've been a slacker this week in updating. Josie and I ordered books from Amazon and we've been reading a lot this week. She got two new ones, both Stage 1 Beginning Readers. They are: Fancy Nancy and the Boy From Paris, and Fancy Nancy at the Museum. We do so love Fancy Nancy! The best part is, Josie can read words! So far we're reading and, at, to, I, a, me, and other simple small ones. It is so cool to sit with her and see it click!




My brother Mickey came to hang out on Thursday and we had fun with him. He is turning 21 on Sunday, it makes me feel a little old (I am 7 years older than him, he's still supposed to be a baby). He has a lot of fun at college, only 40 miles or so from here so we don't get to see him a TON, but when we do it's always a good visit...

Maria!!!



Thank you for the TastyKakes! They were such a fun surprise, and, Luke got to taste them for the first time ever (he is a fan). Josie loves them, it was such a fun, fun treat! Mickey was here when I opened the package and he made off with one of the boxes, but it was okay, it makes a nice birthday gift for him:)

Thank you so much, you made our day, it was so sweet of you to think of us!

Marie's Story

Marie Isabel was born March 3, 2007. She arrived right on time, on her due date and her arrival was much hoped for by her mother, father and sister.
Marie kicked so hard in utero that everyone was certain she was a boy, everyone but big sister Josie who knew with no uncertainty that she was going to have a sister.
Weighing it at 7lbs 15 ounces and 20.25 inches tall we brought home our dark haired girl and settled into a deliriously happy existence.
All went well, Marie developed normally until 5 and half months. At this time she started showing an intentional tremor, most noticeable when eating, playing or crying. We met with the neurologists on October 16, 2007 at The Children's Hospital in Aurora, Colorado. We were admitted to the hospital that day through emergency and in the days that followed we were mis-diagnosed with a form of cancer. A CAT scan didn't show the tumor that they believed was there and from there we met with the metabolic doctors. Marie's MRI showed lesions in her brain and they gave Marie the diagnosis of Leigh's Disease, on of many Mitochondrial Disorders.
In December, 2007 genetic testing found the mutation in Marie's Mitochondrial DNA. Almost 100% of the cells in her blood are affected in Complex I of the cell's respiratory chain, this means that they cannot produce energy efficiently enough to sustain her. Marie suffers from a severe energy deficiency.
The tremor has vanished now, but Marie is troubled by severe reflux (or vomiting). They tell us she suffers from a "failure to thrive". Marie no-longer takes a pacifier, she struggles to suck hard enough to keep it in her mouth. Her head control is poor, and she doesn't stand often. Many nights, Marie does not sleep well, though Mommy and Daddy try to keep her comfortable in between them. She has periods of pain, as of yet unexplained.
Despite all of this every day with her is a blessing, she can laugh, she can smile, she can play. On good days she can roll over. We try so hard to focus on the good, and take the best care we can of the blessing we have been given.
Update March 2008. Marie is no longer vocal, rarely makes eye contact. Emotions are hard to read, we think she still smiles sometimes. She has seizures and we're trying out the drug Keppra to control them. She is tube fed, but still nurses like a rock star. She sleeps in the middle with Mommy and Daddy every night. She is soooooo LOVED!

Update, September 2008: EEG has proven Marie DOES NOT have seizures, she has a movement disorder called Dystonia caused by the damage to her brain from Leigh's. She is now completely free from seizure medication and much more alert. She coo's, she smiles, she plays. She is such a joy! How blessed are we?!
Update April, 2009: Marie is proof that God answers prayers. She smiles, talks, plays, still eats by mouth, though she did wean herself from nursing in March. She is able to move her head side to side, and with assistance can hold very small things in her hands. She adores her big sister Josie, and has a very special relationship with her Daddy. Diazepam is controlling her movement disorder, Dystonia, nicely and it is no longer an issue. The majority of her nutrition is via g-tube but she does enjoy eating bits by mouth. She is almost 22 lbs at 25 months old! Currently Marie only takes Diazepam and Melatonin regularly. Putting her care in God's hands has been the best medicine for her that we've found and He has blessed us.

Update September 17, 2009:
On August 28, 2009 God called Marie home to be with Him after the most beautiful summer together.  She fell asleep the night before safe in bed beside Daddy while I was at the hospital with her new little sister who had arrived that day.  Sometime in the early morning hours God called to her and she flew, waking in Jesus arms.  She is healed, Praise God, and she is running, dancing, singing and laughing in the fields of Heaven.  We are struggling daily to get by without our joyful girl.  It is hard to be without her but we rejoice anticipating our reunion with her when our work here is done.  Big sister Josie misses her sister badly, and little sister Sarah will learn about her through pictures and stories.  We were blessed with the time we had, we know that no matter how long we could have had her it wouldn't have been enough.  Our special angel, beautiful girl, Little Mama, perfect princess, we miss you and we love you.

Hooray! It has been one long, stinkin' week. Jo's got soccer practice this evening and then we're having pizza (from the freezer, I haven't made "real" pizza in so long its just sad). Tomorrow she has a game at the obscene hour of 8:30. Should be interesting, morning people we are not.

Grandma Judy is coming to visit, and cheer on Josie...

I am stealing this idea, I used to do something similar but haven't in awhile. So, Marie and Josie's top 10 favorite things (in no particular order)!

Josie loves (in her own words):

Dragon Tales.

Her purple bunny rabbit.

Herself

Mashed potato's

Doing arts and crafts

Singing her ABC's

"Three Little Birds" or the "Gunna be alright song" by Bob Marley (our song has changed in honor of this favorite thing)

The Disney Princess'

Pickles

Singing songs and twirling

Marie loves (according to Josie and Mommy):

Josie

Blue Bear

Cool Whip

Bath time

Chocolate pudding

Daddy

Rainbows

Socks (seriously, she loves socks. We have to help her now but she loves holding them, chewing on them, pretty much everything to do with them)

Bubbles

Twinkle Twinkle Little Star is her favorite song (Josie says, Marie might dispute this)

Rant

I'm mad. Mad that my calls are not important enough to be returned. Mad that I get the feeling that sometimes, if you are outpatient, you are not considered to have as much medical necessity as inpatient. I'm mad that I made phone calls to doctors today about two relatively time sensitive issues and neither one saw fit to call me back.

Marie is dealing with chronic constipation. In the last two weeks she's managed to "go" six times. I'm worried that the issue is perhaps more serious than I had believed before, because, she's on Milk of Magnesia twice a day and still doesn't go. I'm scared that her bowels might be stopping working. It sounds like I'm a hypochondriac but I'm not. I don't believe that I am anyway... I have a child with a degenerative disease, I freak out about things. It's allowed.

Also, Marie has had 22 seizures today. Those are the major ones that we notice anyway. Our family doctor thinks she may be having more than I realize because she does this thing where her eyes go two different directions and he thinks that simple act could be a seizure unto itself. She is TIRED! She is pale, she makes moaning noises during her "episodes". She is non-verbal, she doesn't normally make any noise at all, but she moans during seizures. I feel her, I think they hurt. I am ticked that I feel like doctors do not listen to me. She's had her emergency extra dose of Clonazepam and they've slowed down, but come on! 22 is a lot!

I feel anxious because I feel like there's something more I should be doing to call attention to her issues that I'm not aware of. What? I think of things over and over again, what I could do differently but I'm stumped. I just hate that things are happening to her and I cannot stop them.

Ugh, just talked with the on call Neurologist... apparently the nurse at the clinic was supposed to call and never did. I will have her neck.... Marie is taking higher doses of all her drugs. This means in an effort to control her seizures she will be my little zombie for the next few days. Some days we cannot win for loosing. To top it off I called our hospital to leave a message for our family doctor so that he is aware Marie's meds have changed. The nurse I talked to there was rude to me. Don't these people know not to mess with Mommy?



On a lighter note, Matt, you make me smile. When I am excited about techie things I will make sure I use proper terminology in the future, it just makes it cooler:) Thanks for the heads up!

New look

Some of you might wonder what the heck I am doing. I figured out how fancy up my page is what! I'm sort of proud of myself, I'm sort of learning the whole "code" thing as I go, and this was a big assignment. I kind of like it, not sure I'm too keen on the text color but other than that, is nice.

Also, the song is Josie's choice. She loves this one... it's catchy, I'll say that. So, I'm proud of myself and I had to brag a little that I managed to alter my page this much. I have plenty of time since Marie has been sleeping in my arms and Josie is watching Sesame Street... that's right, still can't really lay Marie down for naps. Even if I could put her in the crib it makes me to nervous to leave her there since she doesn't cry. I'm terrified that something bad would happen and I'd have no idea. So, in my arms she stays. Spoiled, spoiled girl :)

Brave Little Soul

I found this and had to share... We made an unexpected trip to the clinic today, Marie's been having a tough time. Check her Caring Bridge page for more details. Please enjoy the story below.

Brave Little Soul
The Brave Little Soul By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world.
She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused.
“What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. One of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. She has already chosen a name for you. God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Quiet....

It is so quiet here this morning. Luke took Josie to her Ear/Nose/Throat apt so it's just Marie and me here. Hopefully Josie's visit with the doctor goes okay. Her ear tubes have been in for too long, 3 years (!) so they're going to talk about surgery to remove them and patch the hole in her eardrum. This sucks, everyone else I've talked to had the tubes fall out on their own. Poor Josie, those who know her understand, this will be MAJOR DRAMA! She is also going to have a lunch date with Daddy on the way back and she's happy about that. I'm making Luke go to WalMart on his way home though.... he hates WalMart!

Marie and I are good, we're playing with seizure meds again to get hers back under control. I counted 15 yesterday, 5 were major, so hopefully this gets settled soon. It sucks for her, but she's so tough. She just grabs my finger and we get through it together. It's odd that I can talk about it so calmly, but it's become our day to day. We know how to cope, so we just do what needs done. Marie is so patient, it inspires me to be a little calmer about everything myself.

This week was an interesting one, I made a lot of new friends. I have discovered this entire group of women who are so strong, they are mothers to babies with special needs too. I think sometimes that I've got it hard, but in reality my story is nothing compared to a lot of them. There are some tough Mama's. It's good to have found them, to pull strength from their stories. It is amazing how we are able to find the people we need. It'd like to think that it's God's hand guiding me in the directions I need to be going. I'm a little clueless, so I have to thank Him for the help. I truly believe he introduced me to a few people this week for a reason.

My sister Annalee was supposed to come and visit yesterday, bummer that the snow came. She's coming today though and Josie is SO EXCITED! I'm looking forward to seeing her too. We don't get to hang out much, so this will be nice. I hope the roads are good for her to get here. I think we got about 8" of snow yesterday, it's hard to tell though since it mostly came down sideways on account of the wind. Can you believe last week I was actually online shopping for a pool for the backyard? I love wearing flip flops and snow boots in the same week!

Also, thank you to those who have made tributes in honor of Marie on her Caring Bridge site. I didn't notice they were there until Annalee pointed them out to me. Thank you:) I am feeling the good in the world. There is a lot of it, although they don't show it on the news. I'm sort of in awe of how many people Marie has touched. She's reached out to more people in her life than I ever have in mine. It's amazing. Thank you for caring about her!

The wind is still blowing here... I'm thinking I need to go to my beach with a big pitcher of margaritas... sadly that probably won't happen. Instead I should clean the bathroom, I am such a lucky girl!

I do have lots of soccer pics to put up too, they're just on the camera. I know, I am feeling lazy though. Josie's got another game tomorrow so I'll be taking more I'm sure. She really loves playing.

I'll leave you with a laugh and another installment of my Funny Things Josie Says:

"Soccer girls wear pony tails Mom, and I am a soccer girl"

"Eyelashes on boys means handsome". Heaven help us!!!

While talking on the phone to my cousin Renee "I'm going to hang up on you now"...

"I'm bored putting away my toys" "I'm bored eating dinner" "I'm bored getting dressed" Notice a theme here?

"Girls like green beans, and I am a girl!"

"When you wear glasses you don't look like my Mommy, you look like a weird Mommy" Thanks.

"Why does God take so long making is summer?"

"That took a long time, like eighty four hundred seconds!" I've know idea how long that actually is, but apparently it is a very... long... time....

Smiling....

Feeling good after the bath....

Daddy loves that baby so...
That tickles!
Pretty girl...