Monday, August 31, 2009
Marie's service will be at Zion Lutheran at 10:30 am. She was baptized on Easter, this will be a re-creation of that service. Her "Easter 2" as our Pastor called it.
Memorial donations can be made to Eli's Angels and Hospice of the Plains.
Apparently all the hotels in town are booked up. There are rooms available at the Ramada in Sterling. They have a bereavement rate.
Thank you all so much, we are touched and blessed.
Sunday, August 30, 2009
At this time we are making decisions about Rie's service, we will update when we know.
We take comfort from:
Marie's being perfectly whole and healed by the grace of our Lord Jesus. In the words of a very special boy, "can you see her running?".
Our girls, Josie and Sarah. Even in despair we are blessed with a new bundle and she is beautiful.
In the words of one of Zion's lions, Bob Marley:
Smiled with the risin' sun,
Three little birds
Each by my doorstep
Singin' sweet songs
Of melodies pure and true,
Sayin', "This is my message to you-ou-ou:"
Singin': "Don't worry about a thing, worry about a thing, oh!
Every little thing is gonna be all right. Don't worry!"
Singin': "Don't worry about a thing" - I won't worry!
"'Cause every little thing is gonna be all right."
We also find comfort in the words of our Heavenly Father, I hope they bring you all peace as well.
Friday, August 28, 2009
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 email@example.com
Tuesday, August 25, 2009
Also, today I confirmed that I will be checking in very early on Thursday morning to have a baby. We're a little excited!
Monday, August 24, 2009
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?
Thursday, August 20, 2009
Marie and I are puttering through our mornings, it is so quiet with Josie gone at school. We were going to go for a nice walk this morning but it's so windy here, and the wind steals her breath so we're getting ready to play some games on Sesame Street instead. She loves being able to do the computer because well, she's 2 and unless she's supervised that's sort of off limits.
So we're still here, not much news. Just hanging out and killing time until baby comes. With Josie gone the house is staying remarkably clean... so I don't have to worry much about that. The grapes in our backyard are beginning to ripen so that is sort of fun, I just have to figure out what kind they are...
Tuesday, August 18, 2009
I bequeath to you today one little girl...in a crispy dress...with two brown eyes...and a happy laugh that ripples all day long.. and a flash of light brown hair that bounces in the sun when she runs.
I trust you'll treat her well.
She's slipping out of the backyard of my heart this morning...and skipping off down the street to her first day of school. And never again will she be completely mine.
Prim and proud she'll wave her young and independent hand this morning and say "Goodbye" and walk with little lady steps to the schoolhouse.
Now she'll learn to stand in lines...and wait by the alphabet for her name to be called. She'll learn to tune her ears for the sounds of school-bells...and deadlines...and she'll learn to giggle...and gossip...and look at the ceiling in a disinterested way when the little boy 'cross the aisle sticks out his tongue at her. And now she'll learn to be jealous. And now she'll learn how it is to feel hurt inside. And now she'll learn how not to cry.
No longer will she have time to sit on the front porch on a summer day and watch an ant scurry across the crack in the sidewalk. Nor will she have time to pop out of bed with the dawn and kiss lilac blooms in the morning dew. No, now she'll worry about those important things...like grades and which dress to wear and whose best friends is whose. And the magic of books and learning will replace the magic of her blocks and dolls. And now she'll find new heroes.
For five full years now I've been her sage and Santa Claus and pal and playmate and mother and friend. Now she'll learn to share her worship with her teachers ...which is only right. But no longer will I be the smartest woman in the whole world. Today when that school bell rings for the first time...she'll learn what it means to be a member of the group...with all its privileges and its disadvantages too.
She'll learn in time that proper young ladies do not laugh out loud...or kiss dogs...or keep frogs in pickle jars in bedrooms...or even watch ants scurry across cracks in sidewalks in the summer.
Today she'll learn for the first time that all who smile at her are not her friends. And I'll stand on the front porch and watch her start out on the long, lonely journey to becoming a woman.
So, world, I bequeath to you today one little girl...in a crispy dress...with two brown eyes...and a flash of light brown hair that bounces in the sunlight when she runs.
I trust you'll treat her well.
Friday, August 14, 2009
Tuesday, August 11, 2009
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 ;)
Thursday, August 06, 2009
I am calling you to participate in supporting legislation titled H.R. 3502 which was recently introduced to the House of Representatives. "H.R. 3502 expands existing research efforts at the NIH and fosters greater coordination among NIH Institutes involved with different aspects of mitochondrial research to improve our understanding of mitochondrial disease and dysfunction and to develop treatments for mitochondrial disease."
All the info on this piece of legislation can be found here and there is plenty. From explaining what it is, how it will help, to a form letter all ready to email to you representative it's there. I sent mine yesterday.
Please help me in raising support for H.R. 3502!
I thought this was fascinating, it seems that Mito may be much more common than is believed and it affects even more families than those with rare diseases like ours. I've copied and pasted that info below from the www.umdf.org website.
MITOCHONDRIAL DEFECTS ARE A CENTRAL FACTOR IN HUMAN HEALTH AND DISEASE.
Mitochondrial dysfunction is at the core of a surprising range of very common illnesses and conditions, and represents a promising new avenue for their treatment. As the mitochondria are responsible for producing energy, any illness that has an energy problem could be related to the mitochondria. Diseases in which mitochondrial dysfunction have been implicated include:
• Alzheimer’s Dementia, Parkinson’s disease, Huntington disease, Amyotrophic Lateral Sclerosis (ALS), mental retardation, deafness and blindness, diabetes, obesity, cardiovascular disease and stroke. Over 50 million people in the US suffer from these chronic degenerative disorders. While it cannot yet be said that mitochondrial defects cause these problems, it is clear that mitochondria are involved because their function is measurably disturbed.
• Even autoimmune diseases such as multiple sclerosis, Sjogrens syndrome, lupus and rheumatoid arthritis appear to have a mitochondrial basis to illness.
• Mitochondrial dysfunction has been associated with a wide range of solid tumors, proposed to be central to the aging process, and found to be a common factor in the toxicity of a variety of physical and chemical agents.
Wednesday, August 05, 2009
Today I'm doing laundry and getting trying to figure out what Josie still fits in after getting tall this summer! Busy, busy, busy, but good. Baby is doing well, only two weeks to go. Luke's betting it's sooner, we'll see;)