Happy Halloween!

Too sweet!

Ready for the PreK party yesterday :)

Josie is so excited for today, it's fun because this is the first year she's gotten really into it. We've got a "spooky ooky" song on, and they're dressed for the occasion! So excited!

Hoping everyone has a great night! We'll take pics of the costumes, and thanks Grandma J and Grandma D for the new duds:)

A book review, and a bunch of randomness...

I have a confession to make. I have never read the bible cover to cover. I have spent extensive time in the book of Ruth, and I love Psalms but I'm somewhat selective in what I read there. So, I am beginning The Bible in 90 Days: Cover to cover in 12 pages a day. I am going to do this, and to help me I am going to be using The Cast of Characters as recorded in the Old Testament.

The Cast of Characters is a labor of love written by Rita Kleve. Rita is a friend of our family, she's a member of our wonderful church family, and her son Matt is one of Luke's best friends. This year we also were honored by becoming God parent's to Matt and Charlee's baby boy B. So, we're practically family y'all!

Back on track. Cast of Characters is actually a family tree beginning with Adam and Eve and tracing the characters throughout the old testament, and you can actually follow it straight through to Jesus. This is good, because when I read I am constantly getting confused about who begat whom and so on. What is also really cool is that you can look up a character by name, locate them on the family tree, and in many instances the verse where they are featured is listed there. I got lost looking over this book the other day, and was surprised by how much there is in it. For example, did you know Solomon had 700 wives and 300 concubines (and Luke thinks that I am a handful)!

On a different note, I have been asked about this several times. Marie and Josie have lovies that are "sock monsters". They are wonderfully soft and totally funky, and well, we love them. I got them at Poisoned Creations. There are a ton of new, really cool ones up for Halloween. One of the neat things about sock monsters is that they come with a name and personality. We have Asha (Marie's) and Lilac (Josie's). I also got one for my nephew G named Bruiser. Right now she has some pillows with the Virgin of Guadalupe on them that are very cool, and I sort of want one.

Changing gears once again, have you looked at the stats counter on the blog lately? There are people checking in from T'ai-pei, Taiwan, Fargo, North Dakota, Odessa, Texas, Oulu, Finland, somewhere in the UK. That is just crazy! According the country stats, only 80% of readers are in the US. I'm just blown away by how far reaching the Internet is. Some of my readers I know exactly who you are. Crested Butte (Jess, you are gorgeous in that picture on your blog), San Antonio is Katie living in the most beautiful city in the US, my girls up in Canada, and I think a lot of the east coast are actually extended family. Its a lot of fun to see where in the world people are, and I'm humbled that so many care enough to check in on us.

As the title said, a bunch of randomness. I'm off to referee some crazy preschoolers (Josie and her friend A are currently being Batgirl and Batman) and Marie needs a change! Have a happy Halloween!

Sunshine

Sometimes we don't do much of anything but still wind up having a really. good. day.

Fly

Strong

Smiles

Joy

Leaves

Laughing

Silly

Sweet

Messy

Curious

Me

October....?

Last Thursday it happened... it snowed! A big snow, the kind that keeps you inside, and the wind just howls and those fat white flakes drift all about.

Last Thursday was also Luke's birthday so we stayed home and spoiled him rotten.

His birthday was wonderful, and it was extra special I think because we spent that day in the hospital last year. This year, everything just seemed so much better, I spent the day being grateful.

Today I took Marie for her first RSV shot of the season. She didn't cry but did scowl and have a brief "episode" when she got the shot. Within moments though she wanted to nurse and smiled and talked to me while she waited. Stinker. The big news from today though, is that Marie has finally broken 19 lbs! She is now 19lbs, 4 oz. I am so proud of her. For some reason, she gets enough to eat, but it has been a struggle for her to gain weight. I believe I actually screamed and jumped up and down when the scale flashed the number, I was that happy.

Josie cannot wait for Halloween and her very first classroom party. I am bringing some goodies for that, and she's just over the moon. It makes me glad that it takes so little to make her happy, she's going to be the most beautiful butterfly in the world. Marie will be a monster, and she'll be helping Dad pass out candy that night. If you want to see her in her tights and onesie head over to our house;)

Not much going on here, we're just doing good, and I'll take it:) I'm feeling grateful for a lot of things lately... This is not the most organized post, and it's time to begin the bath time marathon here, so I had better run! Wishing everyone a wonderful week!

Those are the pumpkins from our garden, Josie is incredibly proud that she and her Daddy grew those!

German Apple Cake

We have a bit of a surplus here at the moment.

Today I was getting ready to make German Apple Cake, and wanted to pass the recipe along. It's one of my mom's recipes, from this ancient La Leche League cookbook with a copyright date of 1971. According to the front page this book cost $4. It's in tatters now, and a big red clip holds it together. Inside, there are recipes I grew up with. This is one that's carried over to my adult life.

German Apple Cake
1/2 cup butter
1/2 tsp baking powder
1 cup flour
pinch salt
1 cup sugar
1 lemon, juice and grated rind (or if you're Shannon one generous squirt from lemon juice bottle)
3-4 eggs, separated
4-6 apples, peeled and sliced (the long ways)

Cream butter and sugar, add yolks, lemon juice and rind. Continue creaming until smooth. Add flour, salt, baking powder, then fold in beaten egg whites. Pour into greased pie dish or 9x9 pan. Arrange apples on top, core side down (this is a job for Josie). Bake at 350 for 45 minuets.

We like it with cool whip or whipped cream on top, though growing up we always devoured it plain or with a little powdered sugar on top.

Caramel Apples

We made caramel apples for the first time today, it was goooood! Both girls helped:)

Getting ready to start!

Helping...

More helping...

Our masterpieces!

We were even happy about getting our face washed when it was all over!

Oh yeah, the other night we had a fairy over for dinner!

She brought her sidekick :)

P.S. Josie is currently LOVING the top song (she picked it)! It sounds like her doesn't it?

What we do with our days...

This photo is from last month, remember that Hannah Montana birthday party Josie went to? This is my Hannah Montana! Isn't she adorable? For the record this is the first time I've ever used the curling iron and given Josie "Rodeo Queen Hair".

We lick the spoon, almost anytime I make something that doens't have eggs in the batter. In this case it's melted chocolate from making chocolate covered pretzel rods (thanks again Lisa for a great idea!)

This is how we watch cartoons. The closer together the better.

Josie draws all the time. She's getting better and better at it. I can draw pretty well myself if I take the time, I think she can too. This is her most recent family portrait. I don't know what is up with her Daddy's hair (he is the brown person) but it cracks me up. He looks like a very young will Smith via the Fresh Prince days.

I loved that show!

We talk to our Monkey about everything.

On a more serious note, Marie is really struggling with this cold. She has so much congestion in her head it's miserable. She went through a really horrible coughing fit last night where she'd literally just heave because she couldn't cough anymore. It was one of the hardest things she's been through in a long time. I just sat and prayed that God help her, comfort her. We have been using little noses decongestant drops, and they really work. I recommend them. Last night, I know you're not supposed to, but I put Vick's on her chest and it helped a ton. Luke and I also tried putting it on the soles of her feet and putting warm socks on her. I have been told repeatedly that this works to calm a cough. I don't know for sure if it was that, or a combination of everything but when Marie finally fell asleep about 11:30 she was out for the night.

Josie is doing great, she's looking forward to her final soccer game on Saturday (I can't believe it's over already). She is going to be a purple butterfly for Halloween and keeps asking if Halloween is tomorrow.

Today is the 16, and it is beautiful and sunny outside. I woke up with a peace today. Thank you so much to everyone who's left kind words and prayers. Today is very different from this day last year and I feel blessed.

I was scared yesterday, we took Marie to the clinic and had to do some chest x rays. It felt like deja'vu. So similar to last year. Luke was with me though, and he gave me hugs when I needed them, he is so good. Yesterday, doing the things we did last year that terrified us makes me realize how far we've come. Last night, watching Marie cough I realized that she is a lot tougher than I give her credit for, Josie is too. I think that they do have a sort of Divine comfort that I am not aware of, I need to let go and let God more...

For now I'm going to enjoy the sunshine, and pray that this cough is just a cold and antibiotics help. It was suggested that this may be the progression of Leigh's and that terrifies me.

Thessalonians 5:17-18

• pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Remember

Please take a moment today to remember, and offer a prayer for all our babies called home what feels like far too soon.

Remembering my own early miscarriage, October 2005. Remembering Landon, we love you! Remembering Q, I think of you nearly every day.

October 15 is the National Day of Remembrance for Pregnancy and Infant Loss.

And the rain came down

Starting Saturday night the rain came down. It pored, most of the night, and then all day Sunday. I was soaked at church Sunday morning, but we needed that rain so I can't complain. Ackerman's got over 2", just under 2" at Smith Ground, and here at the house we had an inch and 8/10, and it was about the same on the fields out on the 7 Mile Road. Luke said it's just what the wheat needed and it should take off now.

Marie is doing pretty well. It's like stuff just gets caught up in the back of her throat and she can't quite bring it up. Hospice came and checked her lungs Saturday and they were clear (thank you Jesus!). Our nurse actually thought the cough sounded a little croupy, I've never encountered that before, so she suggested getting the bathroom steaming and sitting with Marie in there. It helped so much! After we did it Saturday night she didn't cough again until mid morning Sunday, and we've been doing it every night since. Hopefully this passes, and it's not a new normal to adjust to. I really hate it when it happens when she's eating. It's like she needs to clear her throat but can't, and in the attempt it's scary that she could choke on and inhale her food in her mouth. She's choked really badly a few times, tonight after dinner I pulled her out of the high chair and thumped her back to try and help. Still, she's a fighter and a happy girl. Really, as long as she's happy what more could I ask for. She had vanilla pudding tonight and it made her day. I hope that we can continue things like that.

Josie and I had a tough talk today. I often worry about her, she just doesn't talk about anything that goes on much. Occasionally I'll get "Bunny says he's sick" or "my Bunny is sick like Marie" but that's about it. Tonight though, she opened up to me and it broke my heart.

She had a picture in her hands of Marie in her walker, taken over a year ago now. Her eyes are bright, she's holding a teething toy in her hand trying to get it in her mouth, and smiling at the camera. She is standing, she is holding, she was so much stronger then.

Josie looked at me and said "I miss when Marie could hold things in her hands, I want her back that way". I gave my standard answer, that Marie is the way God made her. She is beautiful, and perfect in her way, and our gift. Josie then said, "I will pray for her every night when she is in Heaven, I will miss her so much". I HATE that that is my little girls reality. This is something I struggle to wrap my mind around, and to have the responsibility to guide her through it, to try to comfort her... sometimes it's just too much.

Our conversation went on, but the part that stuck with me most was when Josie said "I don't like the choking, the slumping, the seizures, I don't like that stuff happening to Marie". "Bunny told me her medicine won't make her better, I don't like that she has to take medicine". I told Josie it was to keep Marie comfortable, that when her body doesn't work right it helps her to relax. Josie is such a good big sister, she just doesn't want to see Marie suffer. It's Luke and I'd biggest fear too. Josie then asked "The sickness in Marie's body, can we get that in our body too?". My heart breaks watching her struggle to understand, Marie's disease is so complex that I struggle to recall bio chem that I took in college so that I can understand.

Lord, I am so lost sometimes. There are times I don't know why you picked me for this job. I am struggling to understand, and I am trying to guide a child, and comfort one who is sick, and try to create a happy environment. I know I am never alone in this, but sometimes.... sometimes it just sucks that this is our reality. That my daughter is learning about death not because our dog died, but because her sister is so, so sick. My heart breaks, that Josie must go through this. That Paige is a big sister with a little brother in Heaven, that my sweet little cousin never got to rest in my arms. Sometimes I am very, very angry about it all.

October 16 is the day that we learned something was wrong with Marie's body. She had that tremor, we went for an EEG in Denver, it was normal. The neurologist was worried about her eyes twitching and ordered an x-ray. She came back after we sat in a tiny grey room forever waiting, starving because it was now 2pm and we had been in that office since 8am. She came in and said that we were to go to the main Children's Hospital in Aurora. She didn't tell us what was wrong, just that Marie had a serious problem and they would be waiting for us at emergency.

Do you know what we did next? We went to Taco Bell. After we left the clinic Luke and I were so shell shocked we had to regroup. We ate, although it tasted like cardboard, and we drove south. Sure enough, they were waiting. A full ER and they ushered us straight back like we had VIP reservations. At that moment I was terrified, the fact that whatever was going on with Marie was serious enough that we jumped the queue in the waiting room and went straight back was a completely frightening thing for me.

There we sat a few more hours, I begged to nurse her. She was starving, but everyone had told us not to feed her because they may be running tests. It was 6pm, I ignored them and nursed her anyway. She got an IV, we were so terrified and lost, and then the Oncologists came. They were 99.9 percent sure she had Neuroblastoma, a form of cancer. The prognosis was good if detected under one year of age, they had a very clear cut plan. The checked us in to the hospital.

The next evening we learned that's not what Marie had at all, and the day after that we learned what she did have was much worse, there was no chance of survival. My baby was 6 months old and they told us we'd be lucky if she lived to be 5.

Sometimes, its all to much. As October 16 approaches I'm trying not to think about it. That day I'll be busy. We have to see the accountant, I am snack mom at preschool. It will be just another day.

The truth is this, it is not just another day. It is the day some dreams died, they were replaced by new ones, and an appreciation for small things, seeing beauty where many probably don't. Optimism in the face of tragedy. That is the day that my life as I knew it was over, it was replaced by a newer one where the paths are not clearly marked. It was the day I stopped being so naive.

It's been a year... and as much as I hate it I cannot stop thinking of where I was a year ago. I'm terrified of where I could be a year from now.

Lord, please give me strength.




From "The Rain Came Down" by Steve Earl

And the rain came down
Like an angel come down from above
And the rain came down
It'll wash you away and there ain't never enough

Picklesticks!

That is what Josie says. She means "fiddlesticks" but it comes out "Picklesticks" all the time. That or she'll just say "Ah, Pickles!" when things are not going her way. I have no idea where that came from.

I say picklesticks today because both girls are sickies, again. Poor Josie woke up this morning with a stuffy head and cough, and Marie is still fighting that cough of hers. Hospice is coming this morning to check her out. Her chest is all rattly, but I can't tell if it's a back of the throat sound or a lung sound. We did finally get her meds straightened out, Praise God! She is now taking 3x the original dose we started with, and breaking it up three times a day. She got a good nap yesterday and slept well last night, but she woke up coughing at 6. I got up and sat in the recliner with her right next to the humidifier. I kept dozing off and on but she stayed up. She is a tired Mama now.

Josie loved the parade! It was cold and windy here, imagine that! Luke took her to the parade and I stayed home with Rie. She had a blast, and we got a video of her on the float but Daddy didn't take any pictures of her all dressed up. It was something, her green HHS Dragons tee that Christy made her, a gold bead necklace complete with football, and white ribbon in her hair. My Josie is so stinking cute. She even wore her Nike's, because they are green and white, and my child is nothing if not color coordinated.

Today we're laying low, we're skipping the soccer game, and it's damp and freezing out! Almost literally, last I checked it's only 39! I actually put socks on for the first time in months, and well, I don't like socks, so it must be cold!

Please pray with me that Marie's cough passes quickly, it was horrible to hear her this morning. She can cough once or twice and then just starts choking. Her little face was red and her eyes were watering. Poor little Mama...

I'm including my email devotion for today, often they hit home for me. Today, I thought I'd post it here because I have some dear frineds who are struggling with changes in their lives too. I hope it brings comfort to those who need it. This is from Lutheran Hour Ministries.

Daily Devotions from Lutheran Hour Ministries By Pastor Ken Klaus, Speaker of The Lutheran Hour®

"Solid Foundation" October 11, 2008 For no one can lay a foundation other than that which is laid, which is Jesus Christ. 1 Corinthians 3:11 As I talk with people, one of the things many of them complain about is feeling unsure. Their world and the things in which they put their confidence seem shaky. If that's true for you, maybe you might want to take a lesson from the natives of the Sapura plateau of India. On that plain, there is a primitive tribe of natives who have a unique custom. After an earthquake, the men of the tribe go around driving nails into the ground to make it firm again. Now, you know and I know pounding nails into the ground is not going to prevent another earthquake from happening. Pounding nails is a futile gesture, just like many of the ways we try to bring order into our lives. We try to stop our own personal earthquakes by running around and making everything secure and sound. Sadly, the passing of time shows all of our attempts just don't do the job. The truth is: we can't stop our earthquakes, but God can. God is powerful; God is consistent; most of all God is benevolent and cares about what happens to us. To those who have faith in Jesus as their Savior, Who have built their lives upon Jesus as their Foundation, God has given His personal guarantee. He has promised never to pull the rug out from under us or let the roof fall down about our ears. He, and His Son, our Savior, will always be there, ready to give us help, hope and a hand up. So, if you are troubled today, if you're shaken, or if your world is a'rockin' and a'rollin', don't go around pounding nails in the ground. No, trust the Savior Who gave Himself so you might be given a peace that the world cannot give. Let the Holy Spirit build you a solid foundation upon the Savior. From a devotion originally written for "By the Way" THE PRAYER: Dear Jesus, You are my solid Foundation. Through all life's quakes, grant that I rely on You. Let me be comforted in this world, as well as in the next. With a thankful heart I ask this in Your Name. Amen.

In Christ I remain His servant and yours, Pastor Ken Klaus Speaker of The Lutheran Hour Lutheran Hour Ministries

Far too early to be awake...

Sometimes, I am overcome by the desire to hire a nanny. They could change all the diapers, stay up late, but most importantly be the one to get up really. really. early. Then again, I'd probably hate it and fire them within 10 minuets because I was jealous of sharing my kids!

Yesterday we doubled the dose of Diazepam. Last night it seemed to work, Marie was really tired, having had a rough night before and then partied like a rock star all through nap time, and was out by 9:30. I put her to bed between Luke and I, and she did not cough all night long! I know that God heard everyone on that one! But, she woke up at 4am having episode after episode of stiffness. I gave her another dose of Diazepam and she's finally dozing now (it's 6:10)...

Thank goodness Luke will be home to help me this afternoon! Josie is going to ride on the preschool float in the homecoming parade today, and that little Mama is so excited it's not even funny. Christy is making her a Dragons t-shirt and she has all her green and yellow hair clips ready to go. I love that baby. She doesn't have to do anything and she just cheers me up.

So, as I mentioned, it's 6:10 and this would be easier to handle it the sun was up. Is it really that time of year already? We boxed our shorts and tank tops up, because well, we're from Colorado and if we don't put it away come a warm day in January we may be tempted to put them on. Josie and I could wear flip flops all year round if our feet wouldn't get wet...

I suppose it is that time of year though. Yesterday at soccer practice it was just cold, and we did get our Halloween decorations out yesterday (they're not up, but they are out!)... The last year went by way too fast.

So, anyway, I have a new look:) And Ragan over at Blogger Boutique made me a present! I now have my very own "button" that you can take and put on your blog if you pray for Marie! The button is located in the column to the right. It's perfect, it's flashy, and at the end it shows her sweet little face:) I experimented this morning and it works on pages other than blogger, so any place you can use html your all set! I think it's wonderful!