Updates!

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

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

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

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

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

Tumbling

Tada!!!

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

Balance Beam

191th post...

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

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

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

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

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

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

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

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

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

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

6. I get dorky excited about trying new recipes.

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

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

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

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

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

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

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

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

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

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

17. I am terrified of wasps.

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

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

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

Hopefully a break from the heat!

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

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

Diva!

Daddy loves this t shirt!

So proud.

Warning, parts of this post are politically incorrect.

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

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

Funny things Josie says...

I don't want to forget these!

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

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

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

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

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

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

Wordless...

It's been a long week. It's been busy, and hot, and emotionally it's taken a toll. Monday my friends from high school came, it was so good to catch up, and Brenda gave Marie a massage that she LOVED! Thank you so much girls, it was a special treat for us to see you! Seeing Abby and Clay was icing on the cake, they are both adorable!

Tuesday was exhausting, as all doctor appointments are. The stress of making sure my questions are asked and answered, the unknown, the constant coming face to face with Marie's diagnosis. It sucks, but it was a good appointment. I think we've made the right decision when we chose to be with the doctor that we are, I'm more certain after this last visit that he definitely has Marie's best interests at heart.

Wednesday, with Landon's service, was simply put, a sacred day. I was honored to be with his family and friends, it was heartrendingly beautiful and the love that was felt for him was tangible. I'm almost afraid to say too much, it was such a special day, I want to hold it close and not share it. I'm glad that I went, it was something that I needed to do.

Today started off well, but Marie faded fast. She slept really poorly last night, and today saw her struggling with tightness, and breathing, and finally she napped. She's still asleep now, going on three hours. I hope that it's a healing sleep, she was just so tired. She did have fun playing earlier, and so that's what I leave you with.

Photos from my little slice of heaven:

Does it get any sweeter?

Fairy wings...

All for Daddy...

Happiness is a bowl full of crazins...

Sad day.

Tami called this morning and let me know that sweet Landon had passed away. He "grew wings and flew home to be with Jesus" this morning. They are all hurting so, I know the pain is both unimaginable and unbearable.

Please pray for comfort for their family, that they feel the Lord near them in the coming days.

Tami, you're all in my thoughts constantly. Landon was, just as you said, surrounded by love.

I was so sad and cried through church this morning, but a thought occurred to me there, sobbing in the pew. Everyone was singing, Stand up for Jesus, and I thought, how amazing Sunday worship must be in Heaven. What a wonderful first day for Landon.

We love you.

Isa 60:20 -

Your sun will never set again, and your moon will wane no more; the Lord will be your everlasting light, and your days of sorrow will end.

Please Pray

There are no words. Sweet Landon is worsening, his family has gathered round. He is with his Mommy, Daddy and big sister Paige. Things are uncertain for them at this point, I know that they are frightened. I pray for peace, for comfort for all of them, for these hours and moments to be precious.

Tami, we've only been friends a short time but I love you like a sister. You are all in my heart.

Please pray for the Weatherby family in these, some very dark hours. I'm uncertain of what to pray for completely, I just know they are walking a dark road, one that we will someday walk as well. Our love to them!

He is..

This morning I was talking to Luke about what I feel compelled to share on this blog. I often feel that the message I'm spreading is not necessarily my own, but I am just a tool. I am just a voice being used. I've prayed that the Lord use me to share Marie's story the way He would like, but also that He use me as He sees fit. I feel that there is some reason that we were chosen to be a family, Luke, Josie, Marie and I. I feel that in doing this I am fulfilling some purpose. So, back on track. I told Luke about how I was so moved by Psalms 25:1 this week. "To you, O Lord, I lift up my soul".

From there our conversation wound around, we talked about this week, how we both felt, what we struggled with and what has been good. I told Luke, when I am upset Psalms 46:10 is my mantra, I repeat it over and over to myself and it reminds me that I am not alone, that it is beyond my control, that I only need to have faith. "Be still, and know that I Am".

It is something that brings me unbelievable comfort, and yet I struggle with it. When I'm upset I am a do-er. I wash, mop, dust, fold, I am a cleaner. Faster and faster, from task to task I will buzz about, probably talking the entire time. The problem is, it's manic. I don't find any comfort in the cleaning, but I cannot be still. However, it is those times that "Be still, and know that I Am" is just what I need. I am instantly calmed, quieted. He Is, all knowing, all seeing. It is beyond my control, but completely in His.

"Be still, and know that I Am".

So, Luke and I had that conversation about how I love that verse. Then, I went to check my email. I opened up my daily devotion from Lutheran Hour Ministries and just guess what the verse was today.

Be still, and know that I am God. I will be exalted among the nations; I will be exalted in the earth! Psalm 46:10

Does that just bring you to your knees or what?

What can you say?

This finds me at the end of yet another long week. Marie is doing alright, though it's really hour to hour. She has started smiling again. What a blessing, WHAT A GIFT! I had all but forgotten (or maybe ignored) how your heart can swell to see your child smile at you. It is something that I enjoy with Josie, but I found other ways to see that Marie was pleased; and then, a smile. THANK YOU LORD! They are fast and fleeting, not huge gum bearing grins, but they are all mine.

I have this joy, this knowledge that Marie does feel happiness. It lifts my heart up, gives me hope, and then on the other hand I am watching my friend Tami struggle and grieve as Landon falters. It is breaking my heart. What can you say?

I wake up and find myself in a place no one wants to be. Most days I do okay, I wake and I'm joyful that for the moment I have my babies, it is summertime, and I just try to appreciate the small things. How good the water in our little backyard pool feels, my geraniums on the back porch (to those who don't know, I have a wicked way with geraniums, they thrive for me and it's something I don't totally understand because I don't do anything special), a nice cold Easy Street Wheat (thank you Matt!). I have found myself in a place where life is so uncertain, the future too terrifying to contemplate that I literally just live in the moments. What can you say?

I'm so sad that Landon appears to be loosing his fight, and so elated that Marie can show joy. I'm so saddened that both Josie and Landon's big sister Paige are having to prepare to loose their baby brother and sister in time.

Josie told me the other day, "When Marie goes to heaven, that is when we should get a dog." Just let those words sink in. It is our reality. No matter how good she's doing now, no matter how much I live in the moment and don't think about the future, it is inevitable. It will happen, and my sweet, sweet 4 year old is thinking into the future and past it.

This is where I am hit hardest. What will I do? What will we do? What will I say when we go out to eat and they look at our family and say "how many"? It is just overwhelming, and mostly I do enough treading to keep my head above water and I manage to keep these dark thoughts from bogging me down. And then one day I wake up and slip. I spend my time like a drowning woman flailing my arms about, looking for footing.

My wonderful friend Christy gave me a book of evening devotionals for my birthday. Why evening? Who has time to read those in the morning? Really, no matter how much you want to it just doesn't happen. Anyway, this week, one of the devotionals was:

Psalms 25:1- To you, O Lord, I lift up my soul;

I kept thinking it over and over all week, and I know that is really what I need to do. When I am burdened, overwhelmed, drowning in fear, doubt and worry, I need to just lift up my soul. Let Him be the one in charge. My Lord has this all planned out, He sent Jesus to die for me, knew that I would be mother to Marie, He knew the journey He had planned for me. All I need to do is lift my soul up, give my life to Him, let Him use me as He sees fit. He is my light and my salvation, and all the sorrows of this world will only feel like a moment when I set foot in Heaven. So, I feel compelled to write about it. I hope that you will feel His light, I hope that you are able to lift up your soul, to find the peace and salvation that I find in my dear Jesus. I need to just let go and let my Father carry me. How simple a thought but difficult an action at times. I am such a control freak!

I hope that the weekend is good to all of you. Harvest is over, it has been for a few days actually. I wanted to take pictures but I never did, it's okay though. The pictures below are from last year. I'm just grateful to have Luke home, this will be the first weekend he's here with us in over two weeks. We're going to just relax and enjoy it. My love to all-



Combine
Cut wheat
Harvested field with a storm rolling in.

My babies one year ago...




Ec 7:3 -
Sorrow is better than laughter, because a sad face is good for the heart.

Landon

Please keep Landon in your prayers. For over a week he has been struggling, and it seems that things are getting worse. They are currently giving him meds just to keep him comfortable as there isn't much else that they can do. Please pray for peace for Landon, and comfort for his Mommy Tami and big sister Paige. Please let them know that they are not alone, that God is with them in this, and that so many are thinking and praying for them.

Ps 31:9 -

Be merciful to me, O Lord, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief.

Pics from the last two weeks.

Is this their color or what?

Marie's hair has gotten a few shades lighter and she and Josie actually have about the same color now.

A mermaid.

Lovin' swim lessons.

Cuddling (Josie is getting to be pretty good at taking pictures)!

I always say that Josie and I are going to grow out our hair. The only problem is that it's thick and hot, and neither one of us is much for having it pulled back. So, last week we chopped it:) I love it, Josie really likes it. Our hairdresser, Annie, did a fantastic job. I teared up when she did Josie's. This is her first grown up hair "style". It's all choppy and layered up in the back and suits her to a T!

"This is how I roll"

Too cool...

Rough night.

In the last few days Marie has been doing so well. Yesterday evening I saw a few more seizures, but this evening from about 7pm on they were nearly non-stop. I have her meds and she fell asleep but woke having a pretty nasty episode, she held her breath for a good 8 seconds or so. I hate that they wake her up from peaceful sleep. Please join me in praying that this is not a beginning of rough times. I'm worried about Landon, plus with Marie having her first rough evening in almost a week I'm having a hard time. Please pray for both babies. Poor Landon is suffering and my heart is breaking for him and his family. This is terrifying.


On the plus side, massage did wonderful things. She relaxed, had a good bowel movement (thank you Lord). She really felt good I think. I've been doing massage on her myself since Wednesday when our occupational therapist taught me how. I'd like to get a real massage for her, one that lasts awhile, more for relaxation that anything else. I think it would so help her. Marie just can't control her body well, and her little arms and legs stiffen and jerk. I know it must be painful, and as her brain misfires it is hard to know what to do to help her relax.

I should be in bed... thank you so much to everyone who stops in, and checks on our family, especially my sweet Marie. Also, thank you to everyone who prays on our behalf and for Landon and his family.

Prayers

Wheat harvest is still going on. We have 6 fields left at the moment, the wheat is still a little wet so it's slow going. Hopefully another 5 days (give or take) and we'll be finished. Almost all the fields are yielding well, and it really is beautiful wheat so we are feeling blessed.

Marie has been holding steady for the last few days, I prayed and prayed, knowing that I would spend a lot of my time alone with her I prayed that she would do well during this time. My prayers were answered and she's had pretty good days. Yesterday evening and this morning saw an increase in seizures, but there was a lot of activity around here and to be honest I just don't think she handles that well. Little Mama likes her routines.

I am writing today primarily to ask for prayers on Sweet Landon's behalf. He is struggling, and my heart is breaking for them. He is weak, and as I read his mother's words I know she is scared. Tami and I have become close friends, we've bared our hearts to one another, cried over our babies together, and I know that she is a strong person, but she is dealing with the unspeakable fear that causes me to shake, to wake in the night. It is terrifying not to know what is the matter, not to know how to make it better. Tami, I am praying with everything I have that Landon finds peace. Be it here, or if it is his time for the Lord to take him gently, and for you and Paige and the rest of your family to feel His love. I wish I could be there with you, just to sit and keep you company. Please know that I am thinking of you all constantly.

So, if everyone can, please pray for Landon, and his Mom, and his beautiful sister (who is the same age as Josie and has all of her fire, they are two peas in a pod). I'm so shaken by this I don't know specifically what to pray for really, I am afraid to ask for God's Will since there is a change I won't like what it is... I just ask that you all join me in asking for Good Things for a family that has come to mean so much to mine.

Isa 66:13 -

As a mother comforts her child, so will I comfort you;

Jude 1:2 -

Mercy, peace and love be yours in abundance.

Much love-

Harvest

The comments on the last post brought me to tears. I read them over and over. Thank you so much for your words, it is so good to read that support. Thank you, thank you, thank you, from the bottom of my heart. What good friends I have.

Wheat harvest has started, for the next two weeks (give or take) life will be busy. During this time Luke works 12-14 hour days, 16 hours yesterday. I'll be busy taking care of my girls, doing dinners (my sister in law is coming this year, we'll feed the harvest crew together). I don't think I'll have much time to update in the coming days, but if anything changes about Marie I'll let my prayer warriors know:)

Right now, she's okay. She's been having a lot of trouble with bowel movements the last few days, so I spend a lot of time rubbing her little tummy.

I want to share with you a story that our pastor told one Sunday. It is about a dying man, and he prayed to God for help. I can't remember the exact words of our pastor but the gist of the story is this. The man prayed for the Lord to ease his pain, the Lord sent skilled doctors. The man prayed for the Lord to lighten their load, the Lord sent people with meals, people to help keep house, people to help with his business. The man prayed for comfort, the Lord sent friends and family to be with the man. Though the Lord did not come right out and answer the mans prayer, the burdens remained, the pain was there, the man still needed comfort, he sent people to help in the hours it was needed most. Those people were like God's hands, doing the work, helping. I think that all of you are the answers to our prayers. Thank you:)

Ps 67:6

Then the land will yield its harvest, and God, our God, will bless us.

Lu 3:17 -

His winnowing fork is in his hand to clear his threshing floor and to gather the wheat into his barn, but he will burn up the chaff with unquenchable fire."

This verse is sweet to me. Firstly because it is from the book of Luke, and my good, good husband is named Luke. Secondly it is about the wheat that sustains our family, and my Luke is a farmer of wheat. We have certainly been on the threshing floor this year, we have been beaten, but it is my hope that we will be able to still yield fruit. The threshing floor was high on a hill, the grain of wheat would fall and the useless chaff would blow away. We are being threshed, the Lord gathering his good grains of wheat into his barn, and the rest are burnt away. I hope that we are able to hold on, to our faith, to one another, and most importantly to Him. Faith is something I have to work at daily, but I like the idea that I will one day be safely in the barn.

Much love-