Not a first time mom...

I am not a first time mother.  I have three beautiful little girls.

Josie was so easily over-stimulated as a baby.  She would loose it and cry and cry.  I would often find myself in a quiet room away from the group so that Josie could calm down.  Marie was always so tiny.  I remember being consumed with a feeling that she needed protecting.  I never let her cry long, always had her in my arms.  Now with Sarah I am just sometimes at a loss.  She's not my first, I've done this twice before.  The truth is though that there are times when I have absolutely no idea what to do with Sarah.

She cries in the night.  Lately she's been waking up and staying up.  Rather than take it for what it is, her age, testing limits, figuring out day and night, whatever; I worry.  I worry like a champion.  I am up at night in a quiet house with a child who is denying herself rest and it scares me.  She will cry herself sick.  Literally cry until she throws up.  It adds to my worry and makes me a basket case.  Because Marie lost the ability to sleep through the night when she got sick.  I can see the difference, the rational part of me knows that with Sarah it's not the same but I don't know what to do about it.  Marie vomited without warning several times a day for months until it was stopped surgically.  I will never look at vomit the same way again.

All signs point to Sarah being a completely healthy, full of life thirteen month old baby.  The problem is, in the course of my life I have completely forgotten how to take care of a healthy baby.  I know crisis.  I know how to soothe a child getting a blood test for the millionth time.  I know how to change gauze bandage and hook up tubing and make it into a game.  I know just how to cup my hand and thump a back to help weak lungs cough.  I know to rock and sing for hours to try to distract from discomfort.  I know how to read my child's eyes and look for the meaning there, and just how to massage muscles tightened from movement disorder. And when something goes haywire with my completely healthy baby I totally over react. 

I became so good at handling crisis... I've forgotten how to live normally and don't know that it will ever come back to me again.  Sarah is doing things all babys normally do.  I just don't live in normal any more.  Is this a sign of that, could this be the reason for that?

And I need to remember to cast all my worries on the Lord, His shoulders are bigger than mine.  And this will pass...  Luke and I may be a little overprotective, a little compulsive, perhaps we over react a bit.  I think it made us better parents to Marie... and hopefully Sarah will benefit from that too... it's just so different caring for her... it was easier to calm every cry and snuggle it all away...  so that's generally my strategy with Sarah.  Now if I could just get her to sleep a little better...

Fingerprint Friday...

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
You're 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? Click here to find out how to join in!


My fingerprint today is pretty simple.  It's been a hard week. Luke's been in the field, Josie's been having a bit of hard time at school with the catty way that girls can be.  My hearts been heavy and my little princess Marie has been on my mind.  Even though time passes the longing to see her face, to kiss her forehead, to hold her little hands does not decrease.

This morning Josie and I read psalms over breakfast before she went to school.

Thank you Lord.  Thank you for reminding me to read the Bible to my child.  Thank you for giving us your words and loving us so much.  Thank you for Jesus and for the knowledge that we will rejoice in Heaven together one day. 

It was a good way to start the day when I so easily feel burdened and sorrowful.

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalms 91:4

Because of Mito...

Four years ago I didn't know what Mitochondrial Disease was.

Now...

Because of mito Sarah will grow up knowing her older sister only from pictures and videos.

Because of mito Marie never will go to preschool or have a first day of kindergarten.

Because of mito there is an empty chair at the table.

Because of mito there are many children we've come to know and care for that suffer so much every day.

Because of mito most of them can't say a word because it's robbed them of the ability to express themselves that way.

Because of mito I don't make oatmeal in the morning anymore.

Because of mito Josie can't talk to her best friend.  Her best friend is in Heaven.

Because of mito I've made some amazing friends, but if I was pushed I'd have to say I wish we didn't know one another at all.  I wish we didn't have this terrible disease to connect us.

Because of mito our hearts are broken.

Because of mito Marie never got to grow up...

We have had so many blessings in our life, and God has used this storm to draw us closer and grow our faith in ways that we are so grateful for.  I try to always find the praise in sorrow but the truth is its just sad sometimes.

Because of mito our second daughter is in Heaven.  We rejoice that we will see her again, but it is so hard to be without her here.

Because of mito I miss that smile...


www.umdf.org

Mitochondrial Disease Awareness Week

This is it.  Time to raise awareness and call attention to a disease that affects and estimated 1 in 3000 people.  A disease that no-one knows about, a disease that steals, a disease that kills.  Marie lived with Leigh's Disease (one of the many recognized forms of mitochondrial disease) for nearly 2 1/2 years before God called her home.

Leigh's Disease stole from her the ability to express herself, to move on her own, to hold her head up.  Marie never had the chance to speak a first word or to take a first step.  This disease left her in a body that was broken, a beautiful little soul trapped in a cage. She had a terminal disease and though her spirit shone and her smile was the most breathtaking thing I will see this side of Heaven we watched her regress and loose things.  We didn't have very long with her and though we were blessed by the time we did have there is just so much we missed.  So much that mito stole.

Please join me in raising awareness so that someday there will be better treatments, maybe even a cure.  So that someday I will be able to tell Marie's story without having to explain the disease she suffered from.  It is so hard to have lost a child to a disease no one knows anything about.

Please join me in spreading the word! For more information please visit the Mitochondrial Disease Action Committee, MitoAction.

Meet Blye...

Is he handsome or what?  In real life that smile will knock you straight out. 

Blye is in kindergarten, he is part of our church family and he is in my Sunday school class.  I love seeing Blye.  For the obvious reasons, he is filled with a joy for life that is contagious.  For my own selfish reasons, he is physically much like Marie and in being near Blye it freshens my memories of her. 

I want to introduce everyone to Mr. Handsome because there are going to be some big things happening in his life soon.  God has his hand on this child.  Blye has cerebral palsy.  He has been approved for a special therapy in Germany that has the potential to really have a positive affect on him.  From a tiny farm town in Colorado all the way to Germany. 

Please visit his blog to learn more about him and what his family is doing to raise funds for the trip. 

If God lays it on your heart leave some words of support, or if you are able to contribute know that it will make a huge difference in the life of an amazing little man.  And make his Mama smile, she has a beautiful smile too...

Worth a thousand words...

Our last few weeks in pictures...

My cupcakes turned out pretty good...

Sometimes, when it's your party you can cry if you want to...

And then someone will give you a cupcake and everything will be OK.

Presents are nice too.

I just cannot believe she is this big already... amazing!

We went to Kansas for my nephews birthday and on the way home we decided to take pictures in every state we passed through...

Kansas was lovely...

Nebraska was patriotic...

But we love our home!

Sarah made her way into my pantry cabinet yesterday and could not figure out how to get out...

Josie made a wish...

And they played with Daddy when he got in from the field...

And this is our life, although it makes me sad this morning that there are no new photos of Marie to share...  I miss her little face...

Change...

This morning I walked and it was undeniable, you can feel the change in the air.  Soon the flip flops and shorts I reach for will be replaced with jeans and sneakers, the t-shirts with hoodies.  The leaves will change, Josie will start bringing home autumn crafts from school. The lawn won't need mowed as much, it will be cooler and cooler in the mornings.

I have such mixed feelings about this time of year.

Before Marie autumn was my favorite time, I loved the change.  The world seems to pause in the autumn, the heat stops and there are lovely days before the snows set in.  It is a busy time for my farmer husband, and I suppose for me too as his farmer's wife.

With Marie fall brought worry.  Colds and flu would begin, I would be on guard making everyone wash their hands when they entered our home.  We didn't go out as much after fall.  Marie loved to be out and about but colds were so hard on her, I could control who came into our home.  I did what I could to protect her, to shelter her, to keep her safe.  Fall meant the world was shrinking for us.  We would become more limited to our little house.

Now... well now I don't know what to think about it.  Every once in awhile I feel that old twinge, because my soul really does love this time of year.  But then my heart sets in and feels heavy.  Summer is over, and summer was Marie.  Last year summer ended abruptly, when God called her she went and the weather changed overnight.  It was cooler instantly with Marie gone.  Fall brings feelings of being without her.  The reality that summer has gone.  That winter is coming and last winter was hard.

I want to be excited, to feel that rise in my chest at the thought of pumpkins and cornstalks, the picking out of Halloween costumes.  Easting soups again, baking bread.  Of cooler temperatures making our house feel cozier... I want to feel that.  But there's that echo "she's not here, Marie's not here".  I know that echo is not specific to the time of year.  It's the sound of what I am going to live with the rest of my time on earth.

I think to because of the life we live we are more sensitive to the changing of the seasons.  Luke's work changes with them.  Autumn is the season of sowing... this is when we tend our fields, when we plant.  The wheat begins now and soon will be covered with winters snows.  The tiny plants need that cold, the winter wheat, it needs that season of chill.  It needs to be put through that to bear it's fruit.  I think we are like the wheat.  It is in the barren times, the times of chill, the hard times that we are shaped.  We are brought closer to God in the winters of life, and He uses them to cause us to bear His fruit.  When spring comes and the wheat becomes green again and Luke is in the field giving it what it needs to grow the Lord gives it the rains and the winds it needs and it bears fruit in summer.  I think our lives are like that.  Full of barren times, times of growth and feeding, and then we bear our fruit if we walk the right paths, if we trust Him; lean on Him, allow Him to guide us.  We are the harvest.  

My walk was good, Sarah was happy in the stroller.  I went through clothes yesterday to get things out for her, she only has a few pairs of pants and I needed to get the warmer things in order.  The baby clothes are really Marie's clothes, all the things she wore.  Going through them was a rush of memories, I could see her in this or that.  Marvel at the size of her feet as I pulled out her shoes.  The clothes have a different feel on Sarah.  But in the end they're just clothes.  They pass on, down to the littlest sister just as things move and life picks up its new rhythms and things pull forward and the seasons change.  And I hear the echo, "she's not here, Marie's not here".

I know just where she is though...  Beautiful, happy, laughing, dancing... And I talk to God about it when I hear the echo.  And I know that Jesus gives her kisses from me...  And I love Him for that and so much more.
"then I will send rain on your land in its season, both autumn and spring rains, so that you may gather in your grain, new wine and oil."  Deuteronomy 11:14 NIV

 ~ Marie, in the fall...

Wednesday...

Today is Wednesday and I'm exhausted.  After helping the guys in the field yesterday Sarah spiked a fever and was up all night.  Every hour.  This is not new, she hasn't been a great sleeper for a few weeks now.  So happy during the day though.  I think she's teething and I know the ear infection threw her off.

Luke is in the field today picking up the last of the millet.  Then they'll get ready to drill wheat.  Busy month September is.

My email got hacked this morning.  Apparently I was in London and had been mugged.  The hijackers couldn't even come up with a realistic scenario. 

I'm reading the new Jennifer Cruise novel, it's really good and a little scary.  But then again, I scare easily.

Sarah got her toenails painted for the first time last week.  She loved it.  Luke has rules, I can't paint their toenails until they are not baby feet any longer.  She's one and walking and loosing the little baby part of her so quickly!

She had so much fun though!

This is one of the pictures I took of her on her birthday.  Is she beautiful or what?  The blond, blond hair still amazes me.  Each of our girls has been so unique.

Opening presents birthday evening...

Because I am completely crazy about this guy.  I have a huge crush on Luke.  He loaded the dishwasher this morning before he left for the field because he knew I was tired... well, I might have been crying.  Because it's hard to keep your spirits up when you are tired and your baby is sick and you are given to worry...  But he really helped me feel better and I love him so much.

Tomorrow is Thursday and I have to clean my bathrooms...  and the hijackers actually thought you all would buy it that I was in London!

A year... Fingerprint Friday...

Today is Fingerprint Friday and I should do a post about how I see God working in my life.  Today is September third though, and it's a year ago we had Marie service for her.  We celebrated her going home on the day that she would have been exactly two and a half years old.

I don't really remember a lot of the day.  Or the weeks, or the months following Marie's going home.  It is all a hazy time which I think is a blessing in a way but it makes me sad because they were Sarah's very first days and I don't remember them.

It was a beautiful day though, almost hot with very little wind.  The sun shone so brightly that day and we remembered Marie at the little church where Luke and I were married and she was baptized...

So we sent balloons to Heaven... all for Marie.

Today September third is a different day.  I have to get Sarah to a doctor appointment for her ears, I have Josie home from school and I'm so grateful for that.  I need to make cupcakes for a big first birthday party tomorrow.  Luke is in the field trying to spray as many acres as he can to get all the weeds killed, to start sewing wheat next week.  Today is very different day.  But the hurts still the same.  She's my baby, and she was so little and went through so much.  And she could still smile... and I miss you Mama.

Still, there's joy. 

And peaches...  So I'll hold my blessings close and smile for Marie, even if there are some tears.