For Marie...

Oh, Little Mama...  Today I don't have words.  I have an ache in my heart and tears in my eyes and a determination to celebrate your life.  I am trying not to allow myself to feel sorrow or despair today.  Today Rie Rie is all about freedom.  And how much God loves you.  And how you are healed and perfect now in Heaven, and you must be a sight to see and I want to praise Him for that. 

Today the words of your hymn were in my head when I woke up, and they say it better than I can now.  I can feel it though...  How many times did we sing this song Mama, and we sang it at your service too... because your eyes would light up when you heard the words.

Oh how He loves you Marie, Oh how He loves us and gives us peace in the midst of pain.  Oh how He loves you and me....

Oh How He Loves You and Me

Oh, how He loves you and me, 
Oh, how He loves you and me. 
He gave His life, what more could He give; 
Oh, how He loves you, 
Oh, how He loves me, 
Oh, how He loves you and me.
 
Jesus to Calv'ry did go, 
His love for mankind to show. 
What He did there brought hope from despair. 
Oh, how He loves you, 
Oh, how He loves me, 
Oh how He loves you and me.   
 
Oh, how He loves you and me, 
Oh, how He loves you and me. 
He gave His life, what more could He give; 
Oh, how He loves you, 
Oh, how He loves me, 
Oh, how He loves you and me.

We love you Princess Marie...

John 16:33

I have told you all this so that you may have peace in Me.  Here on earth you will have many trials and sorrows.  But take heart, because I have overcome the world.
John 16:33

Christmas without Little Mama was harder than I could have ever imagined it would be.  No dresses, no shoes, no showing off my amazing beautiful princess at Christmas Eve service.  No presents unwrapped by her, and a blizzard on Christmas Day keeping us from spending special time we had set aside to be at the cemetery.  People not mentioning her name, me rambling about her like a crazy woman because she must be mentioned often, and over and over again and I'll be damned if we have a gathering without her being part of it.  For the first time in my life an overwhelming desire to hide under the covers... Then Josie having a hard time, missing her sister.  We talked about Christmas in Heaven, hearing choirs of angels sing, and how beautiful Marie's dress must be this year after all, it was made by Heavenly hands.  We're thinking it was the palest shade of pink and she was barefoot because all though they are adorable Marie hated her tiny shoes, she was happiest with nothing on her feet.  We talked about how it's unbelievable how beautiful Marie is now, how she's healed and free.  But in the end at bedtime it boils down to simply "I want my sister".

We know just where she is, that Rie Rie is just waiting for us, but it doesn't make being apart any easier.  Especially on a holiday where the celebration is our Savior's birth but there is such an emphasis on family being together.  Every gathering this year felt a bit like a knife in the side.

There was joy, it was Sarah's first Christmas and it was fun to see her eye the lights and tear some paper, but it was our first Christmas without Rie too... bittersweet.

I know there will come a day when I'm not just getting by and start living again, but honestly it seems like it will never come.  It is overwhelming the desire to be with a child that's no longer on earth, and pull of needing to be with the other two is a constant thing.  Mother guilt to the power of ten...

So I am holding on... John 16:33.  Thank God this is not all there is!

I'm Free

My wonderful friend Christy found this poem the other day, and I think it's perfect for Marie... I think she was meant to find it.  It brought me a huge amount of comfort on a very difficult day last week...  It's amazing to think that only a few weeks have passed... in some ways it's like a lifetime, in other ways it feels like it's only been a moment since Little Mama was here...

I'M FREE

 

Don't grieve for me, for now I'm free

I'm following the path God has chosen for me.

I took His hand when I heard him call;

I turned my back and left it all.

 
I could not stay another day,

To laugh, to love, to work or play.

Tasks left undone must stay that way;

I've now found peace at the close of the day.

 
If my parting has left a void,

Then fill it with remembered joys.

A friendship shared, a laugh, a kiss;

Oh yes, these things, I too will miss.

 
Be not burdened with times of sorrow

Look for the sunshine of tomorrow.

My life's been full, I savored much;

Good friends, good times, a loved ones touch.

 
Perhaps my time seemed all to brief;

Don't lengthen your pain with undue grief.

Lift up your heart and peace to thee,

God wanted me now-He set me free

Author:  Shannon Lee Moseley.

Our last few weeks in pictures...

I don't know why this loaded sideways... Josie and Marie taken Saturday, August 22.

Taken Sunday, August 23.  Teething and not feeling very good, plus they were both sort of annoyed at me for putting them in the grass.

Taken Friday, August 28.  Marie went home to Jesus that morning, Sarah stayed in the hospital until Saturday.  Bittersweet...  Marie met Sarah the night before.  We took photos of Josie holding Sarah then but Marie was not feeling well.  I just cuddled her, fed her butterscotch pudding and didn't put her down as long as she, Luke and Jo were with me.  We didn't take any photos of Sarah and Marie together, though I have a very clear picture of her wide eyes looking at her tiny sister in my minds eye.  We were so worried about Marie, she was not herself and just so very tired.  She hadn't really slept since Monday and we were scared... though I don't think we would have ever guessed she was so close to going Home.

Flowers for Marie, we had so many come to the house and they were all beautiful.  I photographed each one to save...  Such a foggy week, all the days blurred together.  The flowers were beautiful though, and we're so grateful to everyone who sent them or cards.  We felt such a strong sense of being surrounded by caring people.  It is amazing.

September 3, 2009.  Marie would have been two and half years old that day, we celebrated her life.

Baloons for Marie...

Marie's wreath, made by my dear friends mother in law.  It was only supposed to last a few days, there are still perfect blooms on it in my living room...

A gift from a very special person, the gladiolas that we covered Marie's grave site with.

Sarah sleeping, getting chubby.  Starting to really show her personality.  Beautiful tiny girl, our gift, our blessing. 

Angel--heavenly being: in some religions, a divine being who acts as a messenger of God

This is the Schlachter's Family friend Tami, updating for the family.   God is amazing, his acts are amazing beyond what we can begin to comprehend on this earth.  Sarah Kate Schlachter came into this world yesterday, healthy and beautiful. As she came into this world with so much joy. She got to meet her sisters.
As with the joy came an unimaginable pain.....................
Special angels were sent from Heaven to guide her sister Maire to our Father, the Lord Jesus.  Sweet Marie passed away in her sleep this morning. She met her sister last night and was at home in bed with her favorite person, her daddy.  She went peacefully.  We ask for prayers, for strength, for guidance.  Please pray for this sweet family, they have been such an inspiration to everyone they know.  There faith is amazing!
I or Shan will update with further information.  I really am at a loss of words right now.
Sweet Marie has made her Jouney Home,  We love you Marie!

My email is tamiweatherby@msn.com

Isn't he something?

Still here, no baby. :) That said, life goes on. I have a dr appointment tomorrow and I'm still planning on being induced Thursday. At 41 and a half weeks. Whew.

Lots of other things go on too, Josie is loving kindergarten. Me? I'm just shaken every morning when I drop off my shining star and she doesn't need me to walk her in. She throws her backpack on her shoulders, head back, half a smile on her tiny mouth and marches into school like a woman with a purpose. She loves it. I'm glad she does, it makes it easier, but still it's very hard letting her go. She doesn't need me to walk her in to school. How did she get so big so fast?

Marie is doing alright... heavy thoughts there.

She's cutting her two year molars, teething is hell for Marie. Lots of movement issues the last few days, she can't sleep steadily but wakes and arches and grunts and hurts. Tylenol helps, but not with the Dystonia that seems to be worse with this additional stress on her body. She's drooly and so she chokes more, feeding her is more intense. More attention required, and she doesn't feel good and doesn't want to eat by mouth. She chokes and arches and hurts... it sucks.

After bathtime last night Luke mentioned how she's not really kicking anymore. She used to go nuts the moment we laid her on our bed for bath. She'd kick Josie with legs going a mile a minuet, both of them, just kicking for all she was worth. She doesn't do that anymore. When did she stop? How did we miss it? Is she just getting older and big two year old girls don't kick? Is she getting worse? Her legs are floppy most of the time now...

Still she smiles and giggles and is joy. So I'll concentrate on that.

Right. It's so, so, so hard to see changes in my baby. I don't know if I can put into words exactly how it hurts. Her life is formed with purpose, God lets me know that. I just. I just hate.

I just hate how she must suffer so.

So, before I cry I'm going to just focus on good things. Like this.

We went to the county fair one county over. They have the biggest county fair in the state they say. They have a great carnival. Lots of happy times, lots of wonderful pictures. I love this one most.

Isn't he something?

Because Marie is Marie, only God knows what her future holds. She's tiny and floppy and can't hold on. Because she can't hold her head up, or wrap her legs around the pony, Daddy does.

Isn't he something? In Daddy's arms that girl can do anything. How lucky am I to have him?

Still here...

Hello everyone, just a quick update to let you know we're still here just caught up in the "getting ready to go back to school" business. Baby number 3 has a week to make it's appearance and I'm betting it will be about on time.

Everything is going really well, Marie's doing fantastic (think weigh's 25 lbs, eating entire containers of Yoplait, fighting naps, tormenting her big sister, laughing, getting sticky, swinging a lot, having fingernails painted for the first time fantastic).

I have pictures to share of the aquarium and just how pretty my girls are but since that would involve actually downloading images from my memory sticks, organizing them on the computer and uploading them here I haven't done it yet! Things are just so busy!

Tonight is Kindergarten night at the school, it's no-kids-allowed so we have a sitter and are going to see just what kindergarten is all about. You know you're grown up when you get a sitter for the first time in a month to go to a parents meeting at the elementary school... don't fret, we may take the long way home ;)

Hmmm...

What to catch up on since my last post.... we finished cutting wheat. Luke was rained out Friday night with 20 acres of downed wheat left to go (it had been rained on hard enough previously that the wheat was laying flat on the ground making for slow going. He was going about 2 miles an hour through the field to pick it up). He went back out on Saturday and was done in an hour.

Saturday night we got to hang out with some good friends and see our Godson B who give his own meaning to adorable. Marie and Jo had a blast with them and can't wait until they make the move to our Home Town.

Sunday Marie woke up and just wasn't right. I didn't know if it was the late night before or what exactly was up with her. We went to church together, we hadn't been through harvest. It was nice to be there, nice to take communion. Nice to hear the Word... I needed it more than I realized. I was having a rough morning though, crying for who knows what reason and worried about whatever was making Marie different. We had lunch with Luke's family, and sister S and her husband and hung out with our other Godson G.

After nap time and everyone had gone home it was obvious something was up with Rie. She would not let us pick her up and hold her on our chest with her right side of her face resting against us. Instead she'd throw her head back. I touched her everywhere and soon I knew it was her right ear, she'd jerk back every time I tried to touch it and her little eyes were full of tears. Thinking ear infection or something to that effect I called the hospital and decided to treat with Tylenol until I could get her in to the clinic Monday morning.

Sure enough, she has an outer ear infection or swimmers ear. No big deal right? Normal kid ailment, we can totally handle this. Only, Rie is not a normal kid. On top of what must be a terrible ear ache she's been sleeping a lot. Monday, after napping 4 hours from 1-5 I woke her up. I was giving her her bolus of water and she couldn't keep her eyes open and was literally passing out in my arms. Luckily Luke was home and whisked her up, changed her diaper and got all the toys out in her room waking her up and shaking her out of whatever was going on. She must be watched closely.

Just a hard reminder that something as normal as swimmers ear can take it's toll on Rie. Luckily she's been a regular girl today with lots of smiles, talking, some giggling, lots of bossing around Josie and the other girls at gymnastics practice and her general animosity towards her car seat. She also is laying on the right side of her face. Praise God for small blessings. We are doing ear drops for seven days, she hates them.

So, aside from that bump in the road all is well. The 27th was a hard day, thinking back a year ago. Prayers for L, for his Mom and family.

Josie is begging for some Josie time while Marie is napping and I need to vacuum about a field's worth of stickers out of the carpet of my car so I'd better run!

37 weeks today :) Luke is betting that I have the baby in 2 weeks, I'm thinking it will hold out for the entire 3. Went and checked the lists at the school today, Josie's in kindergarten, we know what kids will be with her in class. I'm not ready for that and she's SO excited. I can't believe summer is nearly over.... Hoping to squeeze some fun things in for the girls these last few weeks before the baby comes!

Nearing the end...

As of now 5 and some odd quarters of wheat still to be cut. We will finish Friday or so, assuming no storms hit us. This is a late harvest, a long harvest, but a harvest non-the-less. So gratitude is necessary. I wonder sometimes how many farmers are caught up in praying for rain, praying for sun, praying for grace but forget to stop and say thank you. They are caught up easily in work, farmers. As they must be.

The girls and I are doing really good. Rie is a ball of fire, she's often found pitching a nightly tantrum in her car seat. Last night she did not want to leave the field, especially because Josie was riding in the pickup with Daddy. Marie was mad. I am second choice, it's okay, I'm alright with that.

Josie is going along like crazy, today at the pool she swam a good 10 feet face down underwater. She asked me if I saw her being a mermaid. Indeed I did.

Her gymnastics recital will be the beginning of August, the other moms and I watch them practice and there's a group wonder of if they'll be ready, if they'll know their routine. It would probably help if the girls would stop chatting long enough to do a front roll.

I am 36 weeks today, 4 more to go. We are starting to get really excited to meet this small person. I have decided that I would like very much to never be pregnant during wheat harvest again. I mean, it's not that I want to complain, but heaving my 9 month pregnant self up a 6 foot ladder into the combine is probably not the most graceful thing I've ever done. I like this being big in summer better than winter though, there are less clothes involved :)

Tonight, Reuben sandwiches with a side of strawberries, chex mix and some spice cake bars. Recipe listed for those delicious things below!

Spice Cake Bars (actually, any cake mix bars, these are fun to play with)

• 1 package spice cake mix (any flavor works, we like white with 1 1/2 cups chocolate chips, or chocolate with 1 1/2 cups white chips)
  
• 2 eggs
• 1/4 cup packed brown sugar
• 1/4 cup butter or margarine, melted
• 1/4 cup water
• 1 container frosting of your choice, or cool whip, or 1/2 cup chips melted with 1 T butter for glaze

Combine first 5 ingredients in large mixing bowl. Beat 2 minuets. Stir in chips if you're adding any (nuts are also good). Spread into greased 9x13 pan. Bake at 375 for 20 min (or until it springs back a bit when you touch the top). Cool and frost or glaze. I cut these up and bag them separately. They're not fluffy but come out as a nice heavy, dense cake that won't get crumbly.

They freeze well but frosting melts in the field so I keep it in my beer iced water cooler until the guys are ready to eat.

Diet Coke

Today I sit with Josie and we enjoy her very first ever Diet Coke. I don't let us drink much pop and never cola... being a western girl as I am it's not even pop, it's all called Coke, even 7-up. She loves it. Of course she does, Diet Coke is a very. good. thing.

On a side note, Marie's voice tremors at times because her diaphragm is a little weak and easily tired. She can still breath okay. It sounds much scarier than it is. Even though there is a tremor sometimes she will still be able to speak. She will not loose her voice. And what a beautiful voice it is.

I have been sitting in the sun... :) Little Mama is snoozing upstairs half under a blanket and fully under the ceiling fan... We found some dry wheat to cut 20 miles north (it rained a lot on Friday evening).

Today is a good day. I will make hot ham & swiss for dinner.... with a side of cherries, bundle up my kids and go to the field.

Over normalized?

Today I've been thoughtful, which is somewhat easy to do when there's no other adults around. Things bounce around in my brain... It started last night.

We took dinner to the field but when it was time to come home at quarter to 8 Marie wanted nothing to do with her car seat. I strapped her in, she fought. She wiggled, grunted, and scowled. She never vocalizes when she's mad, it's all in her eyes and they were angry. We were 20 minuets from home and even the Cinderella DVD did little to appease my tiny dictator. Of course, as almost always happens when she pitches a fit it moved into movement disorder territory and she had an episode. Clonus set in and her arms were rigid, her legs straight in front of her and her breathing got heavy and slightly labored. Her cheeks were bright red and she broke a sweat. I can't do anything. I can't say, "Marie, stop it". There is no "Marie, calm down". All I could do was drive.

She continued to have episodes lasting 1-5 mineuts sprinkled with scowling, heavy breathing and sweating. I got us home and put her on my bed with Josie for company and she didn't stop. She didn't stop in the bath, or afterwards getting lotion and pj's on. She didn't stop until I was on the couch with her, had brushed her very angry little teeth, given her meds, and hooked her up to the feeding pump. The girls called Daddy, still in the combine, to say goodnight. She stopped the moment she heard his voice on the phone. She had been in and out of movement episodes for over an hour.

Josie talked to him some, we had a good hug, and she put herself off to bed (thank you God for my big girl) and Marie fell asleep quickly. This always exhausts her. I was tired too. Hefting a stiff, angry, 25 lb girl with a nearly 9 month pregnant belly is not easy to do. My legs are tired, my arms are aching, my back is sore, but there's nothing to be done about it. She can't walk, she can't crawl, she needs me and so in my arms she is. There are only a few who know how to hold her her properly, so that she won't hurt herself when she throws her weight so passing her off is not much of an option.

And this is my life, and I call it normal. I have to stop doing that.

I have normalized Marie's care, our day to day, I look at the blessing of her. I focus on that to an extent that all the extra hours of care beyond what a normal 2 year old would receive just are normal to me. And they are, normal. If this is what it takes to have my Marie I gladly do it. It's just not life as planned, life as others do it.

Yesterday at gymnastics I was chatting with other moms about school starting soon and how it beginning at 8 dictates your life. I realized with clarity that I am different. School at 8 means waking at a certain time, breakfast, lunches made, out the door and to the school. Because we live in town there is no bus to catch, I must take Josie to the elementary. I mentioned that it will be interesting because I'll have to arrange Marie's meds and tube feeding around that new schedule. The other moms didn't say much after that. I forget I'm not like them.

I will never be the harried, overworked, soccer mom again, with an SUV full of healthy overactive kids. I have special cares, special worries. I have positining equipment in a carseat, I talked with hopsice about getting a machine to monitor Marie's blood/oxygen when she has an episode because I'm afraid she's not getting enough air. I carry an emergency dose of valium in my diaper bag along with tylenol and diapers. Josie says she want's to do soccer in the fall so I suppose I will be the soccer mom, but I will have to monitor temperature if Marie can manage it, balance practice with bolus feeding water, I will have a lot to figure out.

Our therapist mentioned that Luke and I are coping really well. Our marriage is put first and we work really hard to maintain it. He is my rock and the only other person who gets it. There's no blame between us, there's nothing to blame for. There's a huge higher incidence of divorce in parent's of terminally ill children. Wha...??!! Is that really my life??? It is.

I don't see myself as any different than I was, but things are different. Grocery store takes planning, I have drawers and cabinets in my new kitchen just for Marie's meds/bags/syringes/tubing/formula/masks and a special cabinet for spare feeding pumps and nebulizer machines. I plan our days around meds and feedings, I sit outside at swim lessons while all the other moms wait on the bleachers inside because Marie cannot tolerate the heat of the indoor pool. At this size, just getting off the floor with her in my arms requires planning. It's so hard, and for the most part I somehow ignore it.

Have I over-normalized this? I can't bear to play the poor me, my kid is sick, life is hard card. Because life is hard for everybody. Is mine harder than most? It feels like it sometimes, but doesn't every ones life feel that way sometimes?

I feel sometimes like I put on the brave face and let on that it's all okay because to me it feels like we are doing okay. Other people believe it. Then I feel hurt and wonder, how can everyone act so normal, Marie is sick!! But it's because it's hard for them to cope with, and I have to work not to resent them for it. Sometimes I am sick of taking the high road. Sometimes I am sick of all of it. Then overnights it's better and I'm ready to deal again.

How did my life get so complicated? Thank goodness for God's strength because sometimes I know it isn't me. It's Him acting through me, holding me up. I am not that strong.

Today the occupational therapist came and gave Marie a wonderful massage. After a year and a half Marie will finally allow herself to really relax with the OT and she loves the sessions. The OT also thinks she knows why Marie's voice is trembling when she talks, why she sounds like a little billy goat gruff. It's because her diaphram is not strong enough to give a steady push of air through her vocal cords. Instead it's weak and because of that we hear the tremor in her voice. She's not completely sure, but our speech therapist is coming on Friday and she should know.

How is that? Even though she seems so strong, and last night she was so wicked with that terrible fit in the car seat she is getting weaker. I feel my heart crack a little bit... but we'll work with it. What else can we do? And if I'm cranky at the grocery store perhaps this is why... because she's getting weaker and life goes on, and Jo has swim and gymnastics that make for busy mornings, and I have a baby to get ready for, and Marie is getting weaker, but there's still living that must happen even though I really want to just stop and cry. So I have to figure out how to place it, and deal with it, and not let myself fall apart because there are little people who need me. And life is hard. But it's beautiful.

Friday... fingerprints, thinking, fumbling...

"There is a song by Steven Curtis Chapman that says:
I can see the fingerprints of god
When I look at you
I can see the fingerprints of god
And I know its true
Youre a masterpiece
That all creation quietly applauds
And you're covered with the fingerprints of god
So look around you and see where YOU can see God's fingerprints. Is it in nature? Kids? Animals? Where do you see them?"

For more on Fingerprint Friday go see Beki at Pampering Beki...

My fingerprints this week... kicks and giggles from a child growing inside me. Ever stronger, ever more insistent little toes and heels and knees and elbows demand to be recognized. Reminders each time that my plans are laughable in the face of my King... a third child unplanned, bringing blessings unexpected already. Those are His fingerprints on me this week.

To that end... I have been meaning to write for awhile. I just don't know what to write. We are surrounded by our day to day, weather, summertime, Josie being busy, Marie and all that comes with loving her.

Wheat is ready to harvest, still it's pretty wet in the fields but hopefully tomorrow we begin. My head has been awhirl with planning, recipes, grocery shopping, organizing a house that is beginning to feel like our own. I thought I could share recipes of what I am making since my kitchen is all a mess with Harvest Brownies, Tiger Butter Bars, breakfast burritos, banana bread (it was not intentional that all the food I make have so many b's in the name...). So I thought I could do that.

I thought I could blog about the importance of wheat harvest, what my Luke and his family do, and how our grain goes to the elevator, east from there and helps to feed a nation. How prices are not what they should be and there's no explanation, how farmer's benefits are being impacted by the government, how new legislation aimed at preventing huge corporate farms is actually going to hurt successful family farms, how the family farm must be saved. It's as American as apple pie and converse sneaks... but that's a little political and I'm just not feeling it now.

I am thinking.

What has been on my mind these days? Why Marie of course. She is. She is amazing. Funny. Sunshine. She is God's love in it's purest form resting in my arms, holding my hand through the night. She is a blessing I am honored to hold. For some reason, how fragile she is is eating at my thoughts. Her voice is changing. It tremors when she babbles, can she control it? Is it the progression of a loss of motor control there? What a thing, for a child to begin to loose their ability to speak. She cannot make words now, why must her ability to squeak and coo also be compromised? Why must she suffer so. I am stuck in a place where it's all just not fair.

On the fourth of July we took the girls to the park. It is a regular park, not intended for kids as special as my Marie. We played. She sat on my crossed legs as I held her torso with my forearm and supported her head as best I could. I held her tiny hands on the steering wheel of the "firetruck" so that she could drive. I pretended corners to the left and right were being taken at high speed, leaning to and fro so that she was driving... she squealed. She loved every moment. She could not have done it without me. She could not have held the steering wheel without Mama's hands to steady her own. She is two.... and my heart breaks when I see the things in her eyes that she longs to do but because of a broken body she cannot.

It is not fair.

It makes me so sad that there are no words to write and I cry, and I pray, and I cry while I pray... I am blessed that the Lord gave her to me to hold for as long as I can, but waiting until Heaven to see her run like she longs to do (you can see it in her eyes) just seems too long to wait. And yet, a moment to Him.

I am fumbling.

My due date approaches quickly, 5 and half weeks to a new life. A new brother or sister, making Marie BIG, and Josie BIGGEST. Worries about this small one creep in when I'm not looking. Will this baby be like Jo or like Rie? Will it thrive and soar or will it sit close, lean on Mama, need me. Can I handle being needed that much? What if, what if, WHAT IF? And I hate it, because "what if" is satan, and I hate him. All of his sin and what not, bringing death. Stupid satan. Stupid what if's.

I try not to think them and just pray... "Lord, let this baby be healthy" is a mantra in my head. And the worst? It is so hard to talk about the possibility of another sick child that I don't know what to say to friends and family. Luke knows.... so I find my head on his chest as I struggle to get so deep in his arms I'm inside him, where I feel safe.

And life marches on... wheat ripens, storms ebb and flow, screen doors bang, we swing a lot. Flies buzz and bite in the evenings, swim lessons must be planned, dinners made, scrapes kissed, laundry folded and snuggles had. I have one hugging my waist, one in my arms, and one in my belly wiggling to be recognized. I am so blessed and it all feels so fragile...

Please pray for the baby, that it thrives. Please pray for Rie. I think she knows her purpose, I think she is so much wiser than me. I'd like to think she see's the angels that I know surround her. I hope that she does not ache at what she cannot do. I keep thinking of ways to make her able...

Here we are!

We are now, officially, all moved in:) I have some pictures but am short on time so I just wanted to update quickly. Both girls are doing just fine with the move and Josie LOVES her new room. It is completely perfect for my little princess. Rie is sleeping just fine in her new crib (I was worried about that) and didn't seem out of place much at all aside from napping poorly a few days.

We have really wonderful extended family and friends, Luke and his cousins did all the moving and we women-folk were actually sort of not sure what to do with ourselves Saturday morning, the big move day. Internet didn't get hooked back up until yesterday and it was hard to be a week without it! We are farmers, we needed our NOAA and Weather Underground!

So, every things going good, every body's happy. Now if we could just get it hot and dry for the wheat to ripen we'd be right on schedule! Everyone have a wonderful 4th of July!!!

MIA...

We are really doing this. We are actually moving to the new house. I am packing my bathroom and kitchen so it must be for real. I don't think I'll have time to update, and depending on when I actually get my Internet switched, well... I'm going to be MIA for a few days.

Rie is doing well, no more scary breathing when she's had movement episodes (clonus) and her episodes have been brief. It's upsetting to think that going off schedule can affect her to such an extent, but a reminder I needed I suppose that even though she is doing so well (and she thinks she's invincible) my little Mama is fragile.

Jo's good, some anxiety about moving to the new house but after talking to my friend B at church on Sunday her son did the same thing, so it's just part of being a kid. It's hard to think what life is like for a five year old. I just keep reassuring her she will have all her things at the new house, we're not leaving anything behind. Then I get the feeling that maybe I should be teaching her more about Heavenly treasures as she seems so concerned about earthly ones, and then I remember. She is five. I told her I was a superhero and she believed me, she thinks that frozen homemade yogurt/banana/pineapple popsicles are actually ice cream and it just taste a little different because it's homemade. She finds dinosaur bones (black sparkly rocks) and saves them up in a box or saves them to show her friend M as only a boy in love with dinosaurs as he is can appreciate such things, she's fine. She's five.

So, we're doing this. Just in time too... Luke's spraying, then we'll move fast and furious, then it's time to service the combine because in just two short weeks or so we're looking at wheat harvest. I want to catch time and freeze it. I want to hold summer close and slow it down, I want to enjoy these last weeks of pregnancy with my two girls. I want to bottle the sights and sounds of our day to day because it's just going by too fast.

Until later...

Happy Monday

Marie's been doing much better! Saturday and Sunday I kept strictly to our schedule of napping between 1-2 and gave her morning meds a wee bit later. No nasty movement episodes, and most importantly, no freaky breathing!

This morning I have an appointment to check up on Baby, then we're off to the new house to finish cleaning the kitchen. My most wonderful baby sitter B will be here this afternoon and I'll finish cleaning the new place and then moving begins in earnest. Goal is to be in by Friday, moving major pieces of furniture (read Luke's pool table) Saturday!

Busy week but we are all well, my girls are happy and Rie is doing better so I can't complain. I am just going to be so much more careful about keeping that little Mama on her schedule in the future. Then again, she is 2... Josie was hell on wheels if she got mixed up with her day when she was 2!

Here are the girls this morning, Marie is all smiles and laughing (thank you all so much for praying for her!) and Josie well, she's a diva. Then there's me, or rather baby. Nearly 32 weeks! Can you believe it??!!

Worriesome things for little Mama.

Yesterday was blah. Not all of it, the morning was fine, but yesterday afternoon at nap time Marie had a really difficult stretch.

While she's doing so well overall, and we are grateful, Marie still struggles with Dystonia. Daily it is something we manage with her medicine, but also in going through the episodes with her when they happen and providing what comfort we can. For Marie, episodes can last any amount of time, but lately it is 5-15 minuets duration. She will stiffen her legs and turn her feet inward at a 90 degree angle and wring her feet together. She fists her hands very tightly and will either stiffen or pump her arms. She thrashes her head side to side, her breathing is labored and she will break a sweat. While I am not a nurse, her heart rate does race during each episode and they exhaust her. She often sleeps quite deeply following one. EEG has proven that there is no seizure activity during her episodes of Dystonia, it is the movement center of her brain backfiring. Often, episodes occur when she is stressed, overstimulated, in pain, or over tired.

Yesterday we returned home from the new house and lunch with friends at 2-ish. I gave Marie meds, hooked her up to her pump, and laid down with her for her nap. We are trying to break the habit of holding Marie while she is on the pump as she will fall asleep that way and she needs to learn to fall asleep on her own. Preferably before the new baby comes. So, for now I lay beside her when she falls asleep (I like the rest too!).

Yesterday we laid down and she immediately went into an episode. I have learned that there are ways to hold her body still for her that will break an episode, or that completely changing position can bring her out of it. Nothing worked. She became hotter and hotter, sweating, and she was groaning and actually vocalized a few times. Then she began to gasp when she inhaled. Exhaling was OK, but she would breath halfway in, gasp, then finish breathing in. Terrifying.

I hate, hate, hate to see her breathing compromised in any way. They tell us, that as her disease destroys her brain the movement center controlling involuntary and voluntary movement will continue to erode. Eventually this will result in the loss of her brains ability to tell her body to breath. Many children with Leigh's Disease pass away from respiratory arrest.

So, Marie having trouble breathing scares the daylights out of me.

So I prayed, out loud, over and over again. Begging that God stop it because I am powerless when the episodes happen. After nearly a half hour He intervened, Marie took a deep breath, relaxed and drifted off to sleep. She slept quite soundly for 4 hours, not waking until around 6:30 pm.

I was wrecked.

Please pray that this is nothing, the gasping during that spell is not her disease progressing, it is not a sign of her brain deteriorating. I feel that I am praying that the inevitable won't happen, but if it will, will you join me in praying that it not be so painful. That she not have to struggle so? Marie has done so well for so long that the idea of her slipping again is almost more than I can bear, though I know deep down that slip she will, I just choose not to allow it to enter my thoughts and affect now. Now when she smiles so big, laughs out loud, and is so alert and part of things. I can't allow anything to spoil now.

Absolutely terrifying. I hope that it does not happen again. She may have been overtired, or overstimulated. I am going to try to be much more careful with her in coming days. Poor little Mama. After she was asleep though she was so peaceful I had to take a picture. Couldn't you just roll her in sugar and eat her with a spoon? ;)
And then, because Josie was also sleeping and looking so adorable herself I took a picture of her too. She will hate me when she is a teenager.

Need to brag on my Rie...

I just got Dr M's write up from Marie's recent neurology appointment. His overall impression is, and I quote "Leigh's Disease with actual improvement in neurologic picture".

GOD IS GOOD!!!

At the end of another long week

Time is flying by right now. It seems like all our waking moments are spent playing, running, thinking, struggling... looong week.

The house is coming along, drywall is done and textured and waiting for paint. Unfortunately a plumbing leak in the guest bath required that a newly patched ceiling come down and lots of work be done but luckily Luke was able to do the plumbing himself. It should be ready for paint by next week.

Josie's last day of Preschool was Wednesday and we had a picnic at the park. Very cute to see her with her classmates. She is missing school already but with Vacation Bible School next week and gymnastics and hopefully some swim lessons starting soon she'll be busy before she knows it.

Marie's doing great, her allergies are not fun, but otherwise she's busy being two. Her attitude is showing more these days and I'm grateful to see her being a stinker. We're outside as much as we can be and she really loves that. She also gets so excited when it's time to go somewhere, she loves being out and about.

I've spent the week researching Medicaid stuff and came to the conclusion that we might be on the wrong waiver. Unfortunately, what I think is the right one probably has a waiting list of at least a year and I was told there are no exceptions, even if you have a terminal diagnosis. We're lucky to be on the Pediatric Hospice Waiver and have Medicaid as a backup plan, but the waiver doesn't have any services we need (insurance pays for hospice) and the other waiver I've found could benefit us. I'm becoming totally neurotic. I've spent at least two hours a day reading, bugging people, learning Medicaid, trying to find a CNA class in even our extended area that I could get into, and generally feeling like a dog chasing my tail. It is so stressful and frustrating, and to fight for your child and find little doors only to have them slam shut is just. tiring. Advocating is tiring. Seriously. It's my job, it's worth it, and for Marie I would do anything but emotionally it just drains.

I find myself in a place where I have to admit my weaknesses to people that I am not close to. I have to discuss Marie's life and the fact that while she is doing absolutely amazing it may not always be so and time is limited and explain why we just can't wait on lists for years to people that I've never met. It makes me mean, stressed out, short on patience, and in a whole fed up. What really is the worst is knowing that we have it sooo good compared to so many families that are just drowning while trying to cope with children who are fighting huge battles. It's just sad.

I find myself looking for things to remind me that the world has some good left. Looking for that and online classes to get my CNA which if I even think about it pisses me off a little more. I have a bachelors degree in a science field. I am intelligent, I know how to provide Marie's care better than any person on the planet, yet I need a certificate in order to be paid for the time I spend providing a highly skilled service. Did you know you don't even need a high school diploma to get your CNA? Seriously.

**I just realized maybe I should clarify what exactly it is that I'm fighting for. Pediatric Hospice Waiver provides respite care, but only if it's done by a Registered Nurse or Certified Nurses Assistant. That means a stranger would come into our home and that's who I would leave Marie with when necessary. Provided they be willing to take on Josie too. Right. I don't like this at all.

I have some very qualified girls who I'm totally comfortable with, do things my way, know to call me if anything even looks even remotely weird etc. They deserve to be paid for the level of responsibility they take on. I can't afford that. So, trying to get the state to provide respite care. They will if it's a CNA or RN. I'm not down with that, I want to leave Marie with someone who loves her, I want to leave my baby with the person I choose not someone who the state deems worthy because they have a certificate. Marie is incredibly special. I also cannot leave and have any peace unless the watcher does everything my way. My fear is, I can't trust a RN or CNA not to think they already know how to care for Marie. They don't, she's not their baby. I can trust my babysitters, even if they're not yet 20. They love Rie, they fear me, they are like family. I choose them, plus they're more than babysitters. They are providing specialized care, I trained them.

Of course there are CNA's and RN's out there who are wonderful. Unfortunately all the ones I know who are as wonderful as I think they need to be for this job work full time already.

Next step, I become a CNA myself so that the state will pay me for Marie's care (as her personal aide) and then I can pay who I deem worthy of watching my kids what they're worth. Only federally funded health care could make this so complicated. The fact is that the exact program I need exists (train and pay your own staff via medicaid benefit for a very select few, we qualify), if you're over 18 currently, or if you can make it on to a waiver with at least a one year waiting list it could be up to 3-4 years, no exceptions .**

But, we planted flowers this morning. I have the foundations of a pretty decent tan (skin cancer be damned, if laying in the sun makes me happy I will do it right now, thank you). My Josie and I are going to make rice krispies treats this afternoon. I'm hoping Luke will be home and not so tired tonight that we can maybe watch one of the millions of shows we have recorded that we never watch. It's no longer winter and Marie and I can be out and about. I actually took her to the grocery store yesterday, she was amazed.

So I have a lot to be happy about.

It's just that sometimes renovation on a house that is not going as planned, admitting that after over a year and a half of Marie being sick we need some help, fighting for Marie in an arena I don't fully understand, topped off by the fact that because we are in such a rural area there are a lot of things that are just not available no matter what I do... it just gets a girl a little down.

Hopefully next week I make some headway with things. As for the house, one hiccup in such a big project is not bad.

I am getting so excited for Landon's Hope Walk next week! It is going to be awesome to see everyone, and I can't believe how much money Tami has raised in memory of her little man. I'm looking forward to this so much! If you can, there's still time to join us there ;)


I just read my post and realized I sound like a complete control freak. I am. And a neurotic one. Don't mess with me ;)

What happened last week?

That's a good question. It's hard to believe it is already Saturday. The week started off relatively normal: work on house, gymnastics, and I've still been advocating for Marie regarding positioning equipment. Then Wednesday saw the great drywall debacle. Namely, our drywall guy we had lined up wasn't going to be able to do the job so I began the process of finding another. Luckily I have a friend who knows people. I've got my fingers crossed that the drywall will get done and we'll be painting soon.

Thursday Marie had her neurologist appointment. She hadn't been to see Dr M in 6 months, and our only thing we really wanted to talk to him about was the muscle spasm she has in her right cheek. It started within the last month and doesn't seem to bug her, it's just new. He informed us that it is in fact a myoclonus jerk. In Marie's case its caused by the lesions in her brain stem (Leigh's Disease causes lesions (dead or dying tissue) in the basal ganglia and brain stem). It sucks, but really, if our only complaint in six months is that her face has a twitch we don't have a lot to complain about. Dr M smiled nearly the whole appointment and simply stated her "progression is not what would be expected". That, in layman's terms means that Marie is doing fantastic, this disease which they tell us will kill her is not progressing much at all (though at one time is was frighteningly fast). She's stable, thriving and a God given miracle. Marie has Leigh's Disease but it does not define her, she has certain obstacles to overcome but they do not control who she is. At first she seems distant and unaware but any time spent with her shows everyone she is a regular kid full of joy, naughty, deep in her own version of the terrible twos, and an immense blessing. Furthermore, she is fully with it.
Dr M noted her eyes are tracking better than they were before, and her muscle tone has increased (this may be progress, or it may be the transition from hypotonia to hypertonia). Only time will tell. For us at the moment it means she's better able to hold her head at mid-line than she was before, and she's started rolling over to her side again.
It was a good appointment, lots learned, and because of some new information I gained I may be going back to school in June to become a Certified Nurse's Assistant (CNA). Respit care has been a huge struggle for us, we just can't find anything that works. We are just to rural for most services that are offered. But, there is a program in which the state will reimburse a primary care giver for care provided, if they become a CNA. If I were to do this it would open up some new windows for us, we could pay our babysitters what they're worth (they are special girls to take on Marie and their pay needs to reflect that), and since working outside the home is not an option for me it would give us that opportunity of a second income of sorts. We'll see, nothings decided, and I don't even know if my info is 100% accurate but it may be an option and something we'll be looking into.

Last night was also a really big deal for us, Miss Josie graduated from Preschool. They had a program they put together (she was Minni Mouse) and a little graduation ceremony. Completely adorable. I have lots of photos to share. I cannot believe we're old enough to have a kid going into kindergarten.
So, that was the last week in a nutshell. Busy! Hopefully next week is a little slower but I don't count on it. Between houses, farming, kiddo's, etc this is a crazy time of year! Today should see us done spraying no till for weeds and then it's on to the next thing. Baby number 3 is doing well, wiggling all about and busy as can be itself. After Thursday's appointment and Friday's celebration Luke and I are feeling pretty blessed:)

Green fields...

Wheat across the road from the farm.

Grandma's Field. If you look in the low spot you can see the wheat is a little lighter here. There's still a bit of water in that lagoon.

Filling the semi with last years binned wheat, hauling to Scouler.

Daddy's co-pilot. Josie rode with Daddy this morning, was thrilled and says she want's to go again after gymnastics this afternoon (they hand out dum-dums at the elevator). She is also really annoyed that she needs to wait until wheat harvest to ride in the combine. Can't we just take that out for pleasure cruises whenever we want to?

My co-pilot. Marie was in her sling this morning.

Filling the grain cart while the semi's gone. When Luke gets back from the elevator they then dump that onto the semi and it's half loaded. They just use the auger to fill the other half of the truck. Apparently this is much faster!

Another picture of the grain cart and big bins. The auger on that grain cart is huge (this is the one they got last year for those in the know)! It is amazing how fast it unloads!

Random favorites from the last few weeks.

Luke was testing the stations of the lawns sprinkler system and accidentally got the girls. I must have snapped a picture just as the water surprised Marie!

Tent!

An updated of sorts in no particular order:

• Marie got her hair cut by Annie again. We re-discovered that she has baby curls, they are adorable.
• Josie showed her belly button to a boy, she is not shy.
• Marie is now sleeping in her crib (!!!). We took the side rail off and put it right next to my side of the bed so she's still right next to me. Aside from one very looong night she's doing great!
• I am now a huge fan of diapers.com. Their delivery is amazingly fast.
• I am incredibly excited to get our very own Nap Nanny!!! It should be arriving next week:) The company is great to work with and I'm excited at all the uses for this. Fellow families of low tone/special needs kiddos, check it out! This is the coolest thing!
• Marie has an appointment with her neurologist next week, hopefully it goes well. She's still doing amazing, we just have a few questions. Unfortunately we've noticed a little facial tick, we're praying it's nothing. It doesn't seem to bother Marie much, but it's becoming more constant. Hard to see progression of any kind, we'll see what he says.