Life in pictures...

Our cookie house...

The pumpkin patch last Saturday... it was fun but bittersweet.  We enjoyed ourselves yet missed Marie at the same time.  We did get her a pumpkin though, Josie decorated it just so and we brought it out to her site on Sunday.  It is hard to do things, we still think to ourselves "Marie would have loved that so", "Marie would have liked this too", "Marie would have hated it here".  Still it was a beautiful day, and as Josie said "Marie would have loved this".

Sarah getting so big... The pumpkin was huge though!


Josie is such an amazing big sister, first with Marie and now with Sarah.  She has wanted to play with dolls but enjoys being a bit of a little mother to Sarah, it is nice to see.


Our girls pumpkins...

Marie last October.  I could stare at her beautiful face for hours...

Something powerful...

Yesterday I missed Marie terribly... I missed her smell, making her breakfast, her open mouthed smiles, her weight in my arms.  I watched the hours until I could pick Josie up from school and soak up her joy.  On my way to get her I was sent a song on the radio...  I'm posting the lyrics here, if you would like a powerful experience click on the link to hear it sung.  This song could have been written for my Rie, if only it said blue eyes instead of brown.  Her weight in my arms I miss so much, hearing her breathing change as she drifted off to dream each night (because of course I held her to sleep, I could not make myself put her down).  Right down to the maple syrup kisses after cream of wheat in the morning (because Daddy made it that way and she loved it), this is my Marie...

Heaven Is The Face of A Little Girl, Steven Curtis Chapman


Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”

Chorus:

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...

Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams

And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.

Bridge:

But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy (no more).

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.

Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.

Two years ago today...

Two years ago today we were terrified... We were checked into Chilren's Hospital via the emergency room.  When we arrived from an outpatient clinic we bypassed the waiting room.  I remember walking through with a tiny, starving, tired six month old Marie... walking by sick children, bleeding children, crying children... I was terrified that we bypassed waiting, that whatever my baby had meant that we had priority over these other children who obviously also had a need to be seen...

Marie was mid-diagnosed at first.  They told us she had cancer.  The oncologists even talked surgery and chemo... they told us that having caught it so early her prognosis would likely be very good... that made the diagnosis of Leigh's Disease even harder to bear.

This is my update from October 18, 2007...

And one from later in the day when we had learned more...

Today I take comfort in my God's promises, and that her suffering is over...  I just miss those smiles...

"And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise"

I Will Rise, Chris Tomlin 

 

Nothing much...

Nothing much is going on in our world... we just sort of float through the days.  Still struggling to establish a routine, still trying to adjust to a completely different life.  I wonder what to update about.  Things are quieter, if feels like there is just not as much going on as there used to be.

We have confirmed the design for Marie's headstone and my understanding is that it will be ordered this week, I hope that it arrives quickly.  They will only place stones if the temperatures are above freezing and I would really like it to be in place before winter arrives.

We've seen some gloomy weather here.  Sarah's first snow came over the weekend, we got around 5 inches and lots of freezing rain and mist.  Josie went out and played in the snow a little on Saturday, but it never got above freezing that day so she wasn't outside long.  Winter has come early it seems, they say it will be a hard one.  I cannot help but think that of course God knew, perhaps that is why Little Mama was called home at the end of summer...  Summer is over now... those four words resonate in more ways than one.

Luke and I talk and talk... we try to make sense of things.  We cannot help but feel that our innocence is gone.  I wonder if we ever again will laugh so freely, joke so readily... we are changed people.  That is certain.

Josie is doing well, she takes it in stride.  The days she doesn't want to come home from school because Marie's not there are fewer now.  She takes care of Pony for Rie, she sleeps with her every night and loves all over that stuffed animal often.  She has three in her bed at all times now, her beloved Bunny (of course) but she has adopted Pony for Rie Rie, and a penguin that she picked out all by herself to give Marie for her first Christmas.  She has a picture on her wall beside her bed of her little sister on her second birthday... she says she sleeps with her at night and the other day in the car she swore to me that she saw Heaven.  I do not doubt it.

It is harder now... times passage seems proof that life can go on without Marie...  It is hard to wrap my mind around.  Some days are good, on days that are worse I don't know how we could possibly move on.  I'm at a loss for how to start... still, we have a new bedtime schedule, and we do things differently every  morning with breakfast and getting ready for school.  I have not made oatmeal or cream of wheat for over a month now.  I used to make it every morning for Rie.  My entire day is different so we must be moving forward...

We went and had lunch with Marie's hospice nurse yesterday.  It was so good to see her, and she finally got to love all over Sarah.  I miss the people that used to be so much a part of our days.  Now that Marie is gone there is no Barb on Mondays, no mid-week massage from the occupational therapist, no venting to speech about how to get Marie to like the texture of fruit.  It is quieter, fewer people in and out of the house.  I drift around doing laundry and dishes, cooking dinner, trying recipes, cooing at Sarah.  The empty place is still there...  I'm waiting for when Little Mama's absence doesn't hurt quite so badly, the books, people who have been there tell me it will come.

It's gloomy today with a freezing mist coming down... I am taking an angel statue out to the cemetery.  It has a little bird on it that glows at night, and though I know she's not there, I like the idea of Rie Rie having a nightlight...

Comfort found today...

Comfort found today in the words of E.E. Cummings...  A love poem, but in my mind no longer for a lover but a child...

i carry your heart with me by E. E. Cummings

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

Another week...

Another week has flown by... time is surreal right now.  It's moving far to quickly, but going slowly at the same time.  I often get the feeling that everything I'm doing requires wading through quicksand...  I forget to do chores, leave the grocery store with only half of what I need, forget to return phone calls... I haven't got my bearings, I'm just sort of drifting.

Sarah is growing like crazy.  With the birth of her little cousin, who I will refer to as Mr. Man and who is completely adorable, I saw that the newborn is all worn off of her.  She has chubby cheeks, fat little legs.  She is a monster in the most wonderful way.  She loves eating, is starting to coo and graces us with fleeting little smiles that seem to get bigger every time she decides to gift us with one. 

Josie is moving forward... there are often days I pick her up from school and she does not want to go home because Marie is not there... The loss of her playmate is still something that is very hard, and I think it will be for a very long time.

We had to go to the accountant yesterday, to prepare for year end.  Farm books, our books.  I do not enjoy the accountant.  Luke and I went together with Sarah in tow and afterward grabbed lunch before heading home.  It feels so odd to be out and about, to do things minus one.  Marie's absence cuts like a knife at these moments, every time we do something without her for the first time it hurts.  Taking Josie to McDonald's without ordering Marie's beloved fruit parfait, without Luke helping her "walk" on the giant musical piano in the play area... it was so hard.  After Josie leaves for school in the morning and I am without Marie and our morning routines, it is hard.

The passage of time is hard.  I don't want to move on without her (though I know in moving forward with life we are not leaving her behind).  I hate how quickly certain things fade with time... I struggle to recall what Marie's weight felt like in my arms now, though I still can smell her soft skin after bath time and see her goofy smile when she was being silly.  I forget how her little fist felt tangled up in my hair when she fell asleep, exactly how hard she pulled... They are tiny things, things that would be difficult to retain and I know this, yet I'm hit with anxiety about forgetting them.  It is difficult though because things fade and I do not want to forget a single thing.

We have ordered Marie's headstone... it is the most difficult purchase I have ever made.  Still it is beautiful and just perfect for my Little Mama.  Since she has passed there have been butterflies everywhere, and there are butterflies on her stone... and gladiolas, which is absolutely perfect.

Josie has decided to be a witch for Halloween, Sarah has a t-shirt to wear telling the world that she is "Daddy's Little Pumpkin" as she is too small for Marie's dragon costume.  I bought Josie a haunted castle cookie house that we will put together this Sunday.  I will dig my Halloween lights out of the storage room and we will put them up, we will carve a pumpkin.  Each of these feels like a monumental task without Marie.  It needs to be done, we need to enjoy things.  It just cuts like a knife to do that without her.

Today, I need to clean bathrooms and put away laundry and Sarah will hang out with me.  I am not here alone.  Still, there's an empty place in my arms for Marie, there's an empty place at the table, an empty seat in the car, and every time we sit down to eat or back out of the garage it's noticed...  It's harder now than it was before, and I'm guessing it's because I'm no longer numb and am really feeling her absence.  Still, when I look back I see all that love.  It's still here, all that love. 

Part of Me...

Part of Me...
I thought of you with love today, but that is nothing new.

I thought about you yesterday and the day before that too.
I think of you in silence. I often say your name.

But all I have are memories and your picture in a frame.

Your memory is my keepsake, with which I'll never part.

God has you in His keeping. I have you in my heart.

I shed tears for what might have been. A million times I've cried.

If love alone could have saved you, you never would have died.

In life I loved you dearly. In death I love you still.

In my heart you hold a place, no one can ever fill.

It broke my heart to lose you, but you didn't go alone.

For part of me went with you, the day God took you home.

-Author unknown

Please pray for Abigail

I'm asking for prayers for our dear little friend Abigail, who is only a few months older than Rie was.  She is affected very similarly by mito, and right now she has pneumonia... they are currently treating her at home.  Please join me in prayer for this special little girl, that she finds comfort, her family is given the strength they need, and that God hold her tightly.  We just shipped Marie's swing off to her, and I hope that she is soon able to use it!

Please visit Abigail's site and leave her family some words of support, they have always been priceless to us when going through tough times!

Fingerprint Friday...

God's fingerprint in my life... This Friday I'm too all over the place to pick one...

Perhaps it's a mark made on the world...

Sarah at 4 weeks...

Marie at 4 weeks...

Josie at 4 weeks...

God's light...

I think it's in the photos, the life moments captured.  To go back through now and see the beauty of small hours, quiet moments...

Then again, maybe it's my little brother and his crazy ways that make me laugh... This is him recently at the Colorado Professional Rodeo Association Finals...

It is...

Today I was finishing lunch while watching Sarah doze in the swing and the doorbell rang.  I opened it and a plain white envelope was given to me.  Inside was Marie's death certificate.

Death. Certificate.

I would have been finishing feeding her lunch, getting noon medicine ready, preparing to snuggle up with her on a cold and windy day for a nap.  Instead I was handed this cold white envelope with reality inside.  In green and gray ink my nightmare written on paper.  Rie Rie's life ordered into boxes.  Race: white, sex: female, age: 2.  Never married.  Never worked.  And I sobbed.

My baby, my perfect princess, reality on paper.  This is so hard, I was not expecting to get hit with this today.

Also in the envelope a bill from the funeral home... did you know they charge $17.50 for a Death Certificate?  That is how much it costs to have a piece of paper proving your child has died...

I take comfort in her being safe.  I've had to let her go a bit, just as I did when Josie started kindergarten.  Let their time be spent elsewhere, where they need to be... still, it's so hard not to have her here with me.  My sweet, sweet Marie...  It is what it is, and today it is hard.

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...

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 

"Light a Light for Mito”

In memory of Marie and Landon... healed...

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.

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...

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....



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.

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.