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-

Divine...

Today was a long day. We had an appointment with the neurologist, it went okay. What can you say other than that? My daughter is ill, I see progression, her seizures are getting worse, and we have to see a very specialized doctor. He doesn't think her "episodes" are seizures. If they aren't they are movement disorders and there isn't much to treat those. I just want these spells to stop. They are owies and as Mommy it is my job to make that better. I can't do it. No matter how hard I try I am not able to make it better.

I have spent the last few days feeling empty, I felt like God was not beside me. I looked for Jesus everywhere, even in the Word, and was lost. I just felt so far, far away. And then just like that my Father reminded me he is right there. We have crossed paths with a hospice nurse (those people are angels on earth by the way) who took care of sweet, sweet Angel Eli. She is actually going to be our nurse when our own hospice nurse takes a much deserved vacation. She knows the path we're walking, how lost and confused we feel, how frustrated, blessed, all of it. GOD IS SO GOOD!

Right now it is 10pm, Marie and I are up. She can't fall asleep because she's having one episode after another. I am tired. I want her to have peace in a broken body. It's futile here, but I know someday when Marie stands on the "coast of somewhere beautiful" she will know such peace. I just wish I could make it better for a little while.

The wheat is getting closer to being ripe, it's golden but still a little too green. This weekend hopefully we'll begin to bring our harvest in.

I'm going to try to get this baby to bed. Since I know that I have no control and it is out of my hands I find refuge in the Word. Tonight this brings us peace, may it do the same for you.
Psalms 5:11
But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you.

Much love-

Today is mostly business as usual for us. This is the busy time of year if you're a farmer, so Luke is in the field doing summer till (basically using a giant rototiller to kill weeds) and Josie and I are going to hit the pool in the backyard after lunch.

Fireworks are at the fairgrounds this year so we'll be able to see them really well from our front yard. I think we'll grill brats and then camp out on the lawn to watch...

Marie is doing pretty well, still more seizures than normal but she's teething (I think) so I'm not too worried at the moment. We decided not to do any more things with meds until we see her Neurologist on Wednesday next week. Josie is coloring at the moment. Our WONDERFUL hospice nurse brought her a coloring book about princess brides and she is going to get every page colored I think. I had an awesome talk with my little (taller) brother this morning. He's the funniest person I know, it really brightened my day (this would be Mickey the hippie, although he's actually more of a cowboy in reality). He's been home for the summer working my parent's ranch and it's 8 hours away across the state (down by you Michaelene) so we haven't seen much of him for the summer. His world is all cows and alfalfa fields at the moment. He's coming to help with wheat harvest next week and Josie and I are so excited to see him!

Don't you just love this Kenny Chesney song? My sister Annalee is probably the biggest Kenny Chesney fan in the world. For some reason this one just seem's to fit Marie. I cried the first time I heard it, and I've been trying to have less emotional music lately but I just love this song too much not to share it for a little while.

I hope everyone has a wonderful long holiday weekend (although for us it doesn't feel like much of a holiday, just another day). Much love-

Better morning...

Marie is doing better now. She came around about 6:30 last night, played some, cooed some, ate some. The color is back in her face again.

Simply put, it sucked. It was a reminder of how fragile she is, in spite of how normal I think she is. It is scary to have her slip out of it so easily, and I was frightened.

For a few weeks, I have had the phrase "pray without ceasing" running through my head almost in a constant chant. I know now what I need to pray for. I need to pray for the Lord to quiet me, so that I can feel His love, the reminder that Marie (and Josie) are safe in His hands. That nothing is beyond Him.

Thank you all for your prayers yesterday, we feel so blessed to have so many who care about us! Thank you!!!

Prayer request (s)...

I'm requesting prayers on the behalf of my friend Tamara. Her little girl Abby (Abigail) is 3 and suffers from Down Syndrome, Stroke, Epilepsy and blindness. She is beautiful, the cutest smile. They are New York at the moment seeing specialists and in order to control Abby's seizures there is a possibility the doctors may need to remove the right side of her brain. Please pray for comfort for her parent's, strength, wisdom of the doctors, and all other good things. You can visit them here.

In other news, Marie is not doing well today. She had a reaction to the sodium bicarbonate and it's caused her to be really lethargic, her seizures are out of control, we're nearing 25 and they're stronger. The last was nearly three minuets with a few periods where she held her breath for longer than 8 seconds (that's a long time if you're counting). I've been on the phone with the docs and will take her to the ER if necessary. We've already done one emergency dose of clonazepam. Please pray this passes soon and it's nothing more than a hard time teething and a reaction to her med (which will pass on it's own).

Much love-

A few more...