Monday, February 25, 2008


Marie's 1st birthday party is planned for Saturday, March 8 at 1pm. We will be holding it in the basement of Zion Lutheran Church here in Holyoke.

We'd like to ask that instead of gifts you make a donation in Marie's name instead. Donations can be made to Eli's Angels,, or MitoAction, . We'll have an offering basket there that day.

I hope that many of you can make it. Marie has touched so many lives, and we want to make sure that we give her the most wonderful birthday party we can, surrounded by all the people who love her! We hope that you can join us that day!

bday cake

Saturday, February 23, 2008


We're back again. It's going to take a lot to settle back into any sort of routine. Marie is still sore, still crying a lot, still wants Mommy all the time. And she should... Josie wants me to play with her constantly, I wish I had 4 arms. It's like starting over from scratch again with a newborn, it is hard, I feel like I don't know how to feed my baby anymore...

Marie's surgery went well, they tell us she's doing fantastic. I hate seeing her like this, she is sore, she is tired, she gags on her spit because she cannot swallow like she used to. I hope that we did the right thing, time will tell. Being a parent is really hard, so much harder than I would have ever guessed. I am hurting with Marie right now...

Luke and I are sort of rocked by this. Her surgery was harder on us than we thought it would be. This is only the first stop down the path with Marie, I wish that we could stop walking sometimes and just stay right here. I'm afraid of whats around the bend.

We are being as positive as we can, and so many people tell us to be, it's just hard. Reality is hard. I just want to be pissed off. I'm tired of my baby having it so rough... I hope that she heals soon, I hope that she starts smiling more, I just hate seeing her not feeling well... I hate that Josie has to go through so much with her sister... still we're lucky to be surrounded by some really amazing people. God sends me just who I need whenever I need it, God makes it hard to stay mad at him...

A Cradle Song by William Butler Yeats

The angels are stooping
Above your bed;
They weary of trooping
With the whimpering dead.

God's laughing in Heaven
To see you so good;
The Sailing Seven
Are gay with His mood.

I sigh that kiss you,
For I must own
That I shall miss you
When you have grown.

Friday, February 15, 2008

LA Ink episode featuring Mitochondrial Disease

The verse he refers to is (totally appropriate)

Ecclesiastes 3:1-15
A Time for Everything

There is an appointed time for everything. And there is a time for every event under heaven
A time to give birth, and a time to die; A time to plant, and a time to uproot what is planted.
A time to kill, and a time to heal; A time to tear down, and a time to build up.
A time to weep, and a time to laugh; A time to mourn, and a time to dance.
A time to throw stones, and a time to gather stones; A time to embrace, and a time to shun embracing.
A time to search, and a time to give up as lost; A time to keep, and a time to throw away.
A time to tear apart, and a time to sew together; A time to be silent, and a time to speak.
A time to love, and a time to hate; A time for war, and a time for peace.

Wednesday, February 13, 2008

Music selection...

The current top song is Josie's favorite at the moment. We call it the Combine Song, she heard it in the combine with Daddy over the summer:) It's a little punk rock, but then, so is Josie.

Monday, February 11, 2008

And more pictures...

I fixed the photos!!!!

Finally, and in no particular order, here are some new pictures of our girls!!!

Marie got new purple Robeez booties, she loves them and they keep her tootsies warm!

Josie is getting to be quite the artist, here is one of her recent works. They're all done on dry erase board so I've been trying to get photos of the really good ones before she erases them. Daddy is blue, I am green and have no hair, that's Josie up by the sun and Marie down by the tree. No-one ever has any arms... I'm not sure why.

Marie snuggling underneath the prayer blanket we got from Aunt Peggy's church in Estes Park. It's our favorite!

This was just the other day, they were playing hide and seek under the quilt and completely pleased with themselves.

Our family.... this was the beginning of December...

Christmas Eve, Josie and Marie had matching black velvet dresses...

Marie and Mommy

Josie feeding Marie. She does this often and it's a huge help. Marie still doesn't really care for her bottle but she takes it better from Josie than from Luke or I.

Happy girl...


Eli's Angels Book Drive!!!!

Please help us fill our bookshelves for 2008…
We need these items for ages 10 and under

NEW Books

Children’s DVDs

Music CD's

Gift cards to bookstores to purchase books!

Eli’s Angels is a 501 (c)(3) non-profit organization
for children affected with a Mitochondrial or Metabolic disease.

Each month every child in our program receives a book or small gift.
Our packages bring much deserved support and smiles
as these children and their families courageously struggle with illness.

At this time there are over 138 children in Eli’s Angels!

Please visit our website at:

Send donations to:Eli's Angels PO BOX 423Eastlake, CO 80614-0423

For questions:

Friday, February 08, 2008

Funny Things Josie Says

So we're home, and glad to be here although Josie informed me she'd have been okay staying in the hotel longer. She loves it, and says home is boring. I'm glad that she enjoys our visits to Denver, I see more of them in our future.

It's been awhile since I did my list of funny things, and I want to write it down so that I don't forget. For your reading pleasure:

This is an old one. Before Christmas Josie was sitting in the corner on a little chair with a large pile of toys. Any of you with kids know that sitting quietly in the corner is not always a good thing, who knows what they're up to. So I asked Josie what she was doing. "I'm driving to Neverland." Oh, well, what's the pile of toys for. Josie replied, as though I am the biggest idiot in the world "Well, it's kind of a long drive". Of course it is. Why didn't I think of that?

Driving home from Denver Josie held up four fingers, "I am this old". Then she held up five fingers. "Next year I'll be this old, and I'm all out of fingers." She then held up her other hand, "It's okay because I've got more (fingers)!".

My cousin Renee filled me in on this one and it cracked me up. She watched Josie during our Metabolic apt. and they went check out the glass elevator at Children's. Josie crouched down behind the glass wall, Renee asked her what she was doing. "I'm hiding" Josie said. Only at 4 years old can you be invisible behind a glass wall!

There's more that I'm forgetting now, but, she did keep us smiling through our trip!

Saturday, February 02, 2008

Gearing up for a long week!

I wanted to post quickly tonight, we're just getting ready to head for Denver tommorow afternoon. We will be staying at the Holiday Inn Express, and Luke and I will both have our cell phones.

Josie is excited, she really had fun last time we went to an appointment at Childrens, and my Mom is coming to stay and help us out Monday thru Tuesday. We also are going to have dinner with my friend Britt on Tuesday night and we're looking forward to that.

All in all, we're just getting ready. I'll have a lot to update you all on when we get home I'm sure. Right now the plan is to be home Wednesday evening, and I'll update the CaringBridge site then. Much Love- Shan


Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Emily Dickenson