Tuesday, September 29, 2009

Meet Sarah...

She is:

  • Tiny 
  • Cuddly
  • Sweet
  • Sassy


  • Bright eyed
  • Bath-time loving
  • a good nurser

  • His child...

  • swing loving

  • sling loving

  • tractor riding

  • Nap taking

  • screaming her head off
  • wanting her own way

  • cartoon watching
  • ever changing
a blessing...

As for this one... it's been a month since she's been in Heaven.  I don't know what to say about that...  I miss her so badly it hurts... I rejoice with a broken heart...

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Friday, September 25, 2009

My Anniversary

Today is my wedding anniversary.  Luke and I have been married five years...  Five beautiful, joy filled, heartbreaking years.  He and I have grown up together...

This time last year we celebrated Marie being free from seizure medication, she was coming back to us.  Her personality, her smile, her sense of humor were all back and we felt so blessed.  We were thrilled really, our miracle girl was doing well and we celebrated by going to a local restaurant with our girls.  Marie got her beloved mashed potatoes with white gravy.

This year...  I feel a little like a stranger in my own life.  Marie is Home, we live in a new house.  A big house we bought for our large family...  it feels a little empty now.  We have a new baby (something I would have never seen coming this day last year).  She is a blessing, but with any new one we have been getting to know her.  Poor Sarah, we've been mired deep in the mud of sorrow all the while.  Still she is a blessing and she brings us so much joy.  My Josie is in kindergarten.  Not such a little girl anymore, still a shining star and a streak of light and sound.  Luke is my constant, that never changes with him.  He is still my safest place to be.

So many changes in one year, I feel like I'm standing still and the world is spinning around me so quickly that I can only make out bits and pieces.  The rest is a blur.  I am a little lost...

I have been praying almost all the time.  I pray for guidance, for my children, I pray thanksgiving that Marie is healed, I cry to Him that miss her.  I pray that this experience, this life of mine, this loss of my Perfect Princess is making me a better person.  I want to be more like the woman He created me to be.  Grief and sorrow suck.  It is the hardest thing I have ever endured and it will be for the rest of my life I think...  Still, my God is close now.  I feel Jesus with me constantly and that is my comfort.

We are slogging through, walking under a great weight, but here even in the darkness there is joy.  Even in the chaos and confusion and the grim light there is flashes.  It would be impossible not to take joy in Josie and Sarah...

I am a different person from last year...  and completely different from the young girl that Luke married.  We have grown together...  I love him, and I could not be without him.  He is one of the greatest gifts of my life.

We are getting a sitter tonight and going to one of my favorite restaurants... last time we went was Valentines Day and I was pregnant then... tonight I get to have a margarita...

This morning on the way home from taking Josie to school I had my Jars of Clay CD on.  You know how it is when you hear a song you've heard before but suddenly you are hearing it for the first time?  That was me this morning, and the song is beautiful.  I was meant to hear it today.  I think He wants me to cheer up a little bit, after all, it's my anniversary.  My Little Mama is beautiful and healed and perfect in Heaven, I have a little one here to snuggle and nurse and coo over, and a ball of fire to pick up from school at 3:30... 

This Road, Jars of Clay

All heavy laden acquainted with sorrow
May Christ in our marrow, carry us home
From alabaster come blessings of laughter
A fragrance of passion and joy from the truth

Grant the unbroken tears ever flowing
From hearts of contrition only for You
May sin never hold true that love never broke through
For God's mercy holds us and we are His own

This road that we travel, may it be the straight and narrow
God give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God give us peace and grace from You, all the day through 




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Wednesday, September 23, 2009

Monday, September 21, 2009

Mitochondrial Disease Awareness Week

I can honestly say I hate Mitochondrial Disease, specifically Leigh's Disease.  It's a thief in the night, stealing babies far too soon, causing too much suffering... I hope that someday, there is a cure.  For more info on what we can do here in Colorado, how we can make a difference immediately, please visit Landon's Hope.

MITOCHONDRIAL DISEASE AWARENESS WEEK
September 20 - September 26, 2009 is International Mitochondrial Disease Awareness Week. During this week we renew our commitment to educate,support and advocate on behalf of mitochondrial disease patients and their families.

On Wednesday, September 23rd, at 10:00 a.m. internationally, families and friends are encouraged to "Light a Light for Mito” in honor of all who are afflicted by Mito and in memory of the babies, children and adults who have lost their battle with mitochondrial disease.

Facts about Mito:

• Every 15 minutes a child is born that will develop mitochondrial disease by age 10.

• It is estimated that of the 4 million children born each year in the United States, up to 4000 develop mitochondrial diseases.

• At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.

• There are over 40 identified types of Mitochondrial Diseases and believed to be over 100 variants of mitochondrial diseases, .

• In the United States, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found in diseases as diverse as cancer, infertility, diabetes, heart diseases, blindness deafness, kidney disease, liver disease, stroke, migraine, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer dementia.

• The World Health Organization (WHO) calculates that neurodegenerative diseases, also associated with mitochondrial dysfunction, will become the world's second leading cause of death by the year 2040.
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Sunday, September 20, 2009

Stumbling, standing, falling down...

That is sort of what I feel like.  Missing Rie is such a multi-faceted thing.  I am grateful for the time I got, grateful to have been her Mommy, I am glad she is healed, I miss her, I want to pick her up and snuggle her again, I cannot wish her back, I feel peace, I feel despair.  I feel joy, love, anger, frustration, emptiness, gratitude, sorrow, nothing, hope, comfort, abandoned...  It's a minuet by minuet thing.

I am trying to figure out how to help my five year old through this.  She is so lost without her sister, they played together constantly.  Josie has always been a handful, but it's different now.  She is angry that her sister is gone, lonely, sad... she doesn't seem to know how to cope but then she seems to know better than I do...  Yesterday evening she threw flower petals from some tiny pink lily type flowers that have bloomed in our backyard.  She threw them as high as she could, ran about picking them up, all the while singing a song she made for Marie about how she misses her and wants to play with her.  Then she gathered her petals, mixed them with some broken dried leaves using an old stick, said she was making Marie dinner.  Then she screamed at a caterpillar and we went to see if our purple grapes are getting sweet yet...  She takes a lot out on me, because I'm safe.  I'm glad I'm safe but that's hard.

I feel like we stumble, manage to stand up briefly, then fall down back into the abyss again when hit with all the realizations that this is life now.  Stumble, trying to stand again, make it back up only to fall flat again.  I know this will go on for some time.

We went to the homecoming football game Friday.  Josie had a blast.  She screamed her head off for the green and gold...  It was nice to be out and about, fun to see people, Sarah was a very good girl and snuggled in her sling the entire time... but it was like we'd forgotten something.  Something was missing, we were not complete.  A family of five with only four present... Missed Rie a lot...  we'll get there...

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Thursday, September 17, 2009

Wednesday, September 16, 2009

How are we doing?

How are we doing?  It depends on the minuet really...  Days have fallen into an order of sorts, I don't feel like I'm standing at the edge of a black hole, things are not so chaotic anymore.  Josie going back to school has been a huge help, mornings revolve around getting her up, fed, dressed and into my wonderful friend V's SUV as she's been taking her to school for me.  Then there's nursing Sarah, doing dishes, and I actually have been getting Sarah to sleep and digitally scrap-booking the rest of my morning away.  I never had much time to do it before, and it feels good to get life in order, even if it's only photos.

Afternoons I bring Luke lunch and ride in the tractor with him a few hours before I come back in to pick Josie up from school.  I am grateful his office is so dusty, dirty, private.  The views from his window are beautiful...  It's a good place to be, there with him.  It's a good place to cry.  I love seeing him work, it's been a long time since I was able to ride with him.  I haven't spent this much time in the cab of a tractor with him since I was pregnant with Josie.  Sarah sleeps in her car seat on the floorboards, the steady hum of the engine and the constant rocking and vibration work wonders to lull her into dreamland.

Throughout the day I am suddenly struck by this incredible emptiness, be it the empty Nap Nanny on the floor, folding laundry and there is no size 3T in the piles, ordering diapers and only buying size one not size three...  Things everywhere remind me of Marie.  And I love that, but it makes me miss her so.  I want her in my arms, that weight...  I miss the way her hair smelled after a bath, I missed painting her toenails on Saturday morning when I painted Josie's... and her sister misses her too.

There is acting up, there is lots of sensitivity, but at the end of the day Josie has lost her playmate and she is lonely and bored at home.  The hours she and Marie would spend playing their little games... she doesn't know how to fill them and I'm not completely sure how to help her other than just being there.  I have the same problem, many empty hours to fill.  Cuddling Sarah helps, and she is a beautiful baby, but she is Sarah, unique to herself.  There is no replacing my Little Mama, her laugh, her smile, her smell... and it's empty here without them, for all of us.

Luke coming home is hard, his girls looked forward to that part of the day.  My heart breaks a little when there is only a blond little five year old running for the door.  No wiggling two year old in my arms about to come undone if she cannot get to her Daddy right now.  Marie's face would light up at the sound of his boots on the floor, after all, she was his baby.  Through and through.

I know we'll treasure these memories and they'll bring us joy and comfort in the coming years, but right now it's only been two weeks and being separated from Marie hurts so much.  Still, we're grateful that she was taken quickly, no extended suffering.  It was peaceful, she is healed.  Healed and running with Landon, Quinlan, Bernadette, babies gone to soon.  I also know mine are not the only arms that are empty and there is comfort in having amazing women who understand... I pray a lot...

Sarah was baptized on Sunday, it was beautiful.  It was amazing really, watching my child be welcomed into God's family having seen that journey through to completion in Marie.  To have seen her baptism and how God worked in her life, and how He brought her Home is just amazing...

Grateful to have been a part of that, but missing my Rie Rie so....

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Lamentations 3:31-33
For men are not cast off by the Lord forever.Though he brings grief, he will show compassion, so great is his unfailing love.For he does not willingly bring affliction or grief to the children of men.

Monday, September 14, 2009

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

AuthorShannon Lee Moseley.

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Saturday, September 12, 2009

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. 
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Wednesday, September 09, 2009

Sunshine

sunshine field Pictures, Images and Photos
Missing Rie Rie is easier if it's done in the sunshine.  It's hard to be sad when it's so beautiful outside... yesterday I sat and sunned, and watched Sarah sleep in her car seat in the shop.  I watched the sky from a hot black seat on the four wheeler while Luke prepared the drill for sowing wheat.  I watched him work while I was lazy and it was nice... nice and quiet for remembering beautiful things... nice to see him at his work because I often don't get to watch him.  Nice to see Sarah sleeping peacefully, nice knowing Josie was happy to be at school on a Tuesday, nice to picture Marie running through fields of Heaven like the fields of home, and nice to feel the sun on my back.  Right now, that's enough. 
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Tuesday, September 08, 2009

Remain

Album: Camelot Falling
Song: Remain
Written by: Mike McClure
Performed by: Mike McClure Band

I've been out there in this wicked world
And it pulls me under sometimes
And I can't say I’ve had many days
That it has not messed with my mind

Chorus:
Everybody's searching for the end of the rainbow
I'm just trying to smell the rain
And every joy it seems to be wrapped up in sorrow
Behind every pleasure there's been a touch of pain
But I will remain

Highs and lows
Ups and downs
Heavenly highs and crashing grounds
But you walk a mile in my worn out shoes
Walk yourself right through my blues


Chorus:
Everybody's searching for the end of the rainbow
I'm just trying to smell the rain
And every joy it seems to be wrapped up in sorrow
Behind every pleasure there's been a touch of pain
But I will remain


I've always really like that song.  I like it better now, because it is me.  Only I'm a little lost and not sure who I am anymore.  I am a mother of three, only one is in Heaven and one is independent as hell and puts on that she doesn't need me with every ounce of her energy.  I am a wife... to a grieving husband and my heart breaks for him at the journey he's had to walk.  I'm a sister who doesn't have the energy to talk or to call, I'm a daughter who has always very much disliked being told what to do.  I'm a child of God, I'm an emotional eater.  I am numb with grief yet every ounce of my heart aches with a pain that is hard to describe.  I am a nail polish junkie.  I'll figure it out someday.

Right now I get the feeling I am walking in quicksand, I am moving so slow, my thoughts are moving so slow.  And I'm told that's okay, it just doens't feel okay.  Everything feels so different and I'm a little lost and a little terrified.  The ordinary is overwhelming right now...  I'm grateful for those who care.  For the ladies bringing dinner because I can't string together the process to prepare it right now.  Beyond taking care of the girls I'm sort of non-functioning.  My time management is terrible without Marie and I'm lost without a schedule of meds and feedings to tell me what to do.  I would just talk to her all morning, now I could talk to Sarah, but she's sleeping...  I am so lonely without my little companion.  I am going to the farm this afternoon with Luke...  there's too much house here today and it's too quiet.  

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Saturday, September 05, 2009

Grateful...

Thursday was a beautiful day.  The only morning of the last week not plagued by fog, and Marie's service was just perfect.  Now we're on our own again and trying to get things sorted out.  Everything is the same, but without Rie it feels different.  I have a lot more time on my hands.

I catch myself wanting to pick her up and kiss her face, longing for her but I wouldn't wish her back.  I'll see her again, and for now I'm trying to just stay grateful for the two years, 5 months and 25 days I had of Marie.  Each moment was a blessing.  I'm just trying to stay grateful for holding her as long as I did, for those moments were a gift.  To keep sadness at an arms length, though I'm not always successful.

I'm also grateful for our family, friends and community.  I'm grateful for the meals, the hugs, the cards, the donations that will help Marie live on by good works.  I'm grateful for the fields being worked by good guys.  For the time they're spending to ready ground for sowing in the coming weeks.  Because, though grief has come and muddled up life, the farm won't wait.  She needs her fields tended, the wheat needs sown, and it cannot wait.  It's odd not being sure how to move and being pulled forward anyway.

I'm grateful for Josie and Sarah, they keep me from turning inward and letting darkness swallow me.  They are still here, they are joy and they need me.

Grateful to everyone who cared for us in the last little while, and a huge thank you to those who are working Saturday to help us out.  We are blessed.

Psalm 34:18
The LORD is close to the brokenhearted and saves those who are crushed in spirit.
(thanks Matt)
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Tuesday, September 01, 2009

Sarah... and Marie

Because my two girls are forever entwined, it feels right to share these together.

Please meet our dear Sarah Kate.

Those of you who have met Josie's friend Bunny can appreciate the bottom picture.

Now, Marie.  I felt it only right that I wrote her final piece of this world though trust me, this is by no means the end of Little Mama's story.


Marie Isabel Schlachter woke in Jesus’ arms on August 28, 2009 finally being fully healed from her battle with Leigh’s Disease. 
Marie was born March 3, 2007 in Holyoke to Lucas and Shannon Schlachter.  She was diagnosed with a debilitating neurological mitochondrial disorder early on but that did not define her.  Marie was a lesson in faith, joy, and hope and she bettered the lives of everyone who knew her.
Her final days were not spent suffering but in swinging, eating ice cream, and being with her family. 
She is survived by her father Lucas, her mother Shannon, big sister Josephine Ann, little sister Sarah Kate, Grandparents Steve and Judy Schlachter, Grandparents Bob and Debbie Gullet and Robert McNevin, Great Grandparents Kenneth and LaRue Schlachter, Great Grandmother Lola Wicker, Aunt and Uncle Glendon and Stacey Price, Aunt Annalee McNevin, Aunt Marika McNevin, Uncle Mickey McNevin, cousin Gavin Price, and many great Aunts, Uncles and extended family as well as many close family friends. 
We are blessed to have held her for as long as we were able and look forward to the day we reunite with her again. 
A memorial fund has been set up at First Pioneer National Bank.  Memorial contributions will be divided between Eli’s Angels and Hospice of the Plains.


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