Because I could use a little summer...

Because I could use a little summer, the barefoot in the grass kind, the sunlight on brown skin kind, the sundress and that's all kind.  The kind of summer day that lasts long and it's warm after dark, where you sit on the patio and eat your ice cream slowly as the sun sets down... the best kind of summer...
This is the last photo I took of some amazingly precious feet...  I look forward to kissing them again someday.  Where those feet walk now I believe it is always summertime...

Two months today since she flew away and I miss Princess Marie, Queen of the Universe.  Beautiful perfect Little Mama, Daddy's Isabella, our Rie Rie...

"Miss you everyday
Miss you in every way
But we know there’s a
day when we will hold you
We will hold you
You’ll kiss our tears away
When we’re home to stay
Can’t wait for the day when we will see you
We will see you
But baby let sweet Jesus hold you
‘till mom and dad can hold you…
You’ll just have heaven before we do"
Glory Baby by Watermark

Held...

"To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair"
......
"This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held"
Held, Natalie Grant

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.