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Monday, December 27, 2010

Happy Holidays

In this home we celebrate Christmas. It was magical around here the night we opened Christmas Eve gifts and the morning we opened Christmas presents. We spent lots of time with Uncle Chris and Gma and Papa. Delaney really got in to opening gifts this year. It really brought the magic back for her sisters.

Some highlights.

Charlotte played two songs she'd memorized on the keyboard.

Julia's face after reading the Elf on the Shelf book.

Delaney patting the presents.

Charlotte's face after opening the largest sketch book ever.

Julia climbing on my lap to read her portion of the Christmas Story.

Delaney's face upon seeing her new doll and the crib to go with the doll.

Charlotte's ability to help spark the magic of Christmas for her sisters.

Julia having a magical afternoon/evening with her grandma.

Delaney loving on her grandma, grandpa, and Uncle Chris.

Thanks to everyone who helped make this such a magical holiday for our kids.

Tuesday, December 7, 2010

Julia Bean Turns 9!!!!

To think this is where is all started for me...I know Jess and her dad go back to the beginning but for me this is where I entered her life story. And I think of this little face everytime I close my eyes and think of Julia.

I cannot believe our little beanie is 9 years old. Gosh... I remember when I met her. When it started for me. Those curls and that smile. Oh my that smile. She has grown since then. Today I would describe Julia has upbeat, helpful, loving, passionate, creative, active, super intelligent, insanely loyal, and viciously protective.

I am so grateful to be her "mama". Raising and homeschooling her has been nothing short of a challenge but also one of the most rewarding adventures I have ever been on. To see just how intelligent she is first hand is mind blowing. To watch her build and create and draw and play keyboard and experiment with new things brings a smile to my face. To watch her be ferociously protective of Char (when they aren't fighting) and Delaney makes me proud.

Her totally awesome birthday cake. Jess came up with the idea and I got our wedding cake decorator to make it for Julia. We could not have imagined a better cake.

Now this is an awesome reaction to seeing the cake for the first time.

Totally worth keeping it a surprise! :)

The perfect doll from Grandma and Papa! She sleeps with her. She plays with her. She's totally in love.

Her Aunt Jennie and Uncle Dylan sent her real rollerskates. I think she liked them lol

Um yeah she totally loved them!!!

Watching her open presents is fun!

She LOVES LOVES LOVES Jess found this game and we couldn't resist!

She is not short of facial expressions.

She is in love with animals. Jess and her mom (Grandma) found this while they were out looking for other things. I don't think they could have picked a more perfect gift for Julia.

Wednesday, December 1, 2010

Beaux Babies

Our friend makes custom bows and bow holders. She has asked to donated a % of December sales to Delaneys medical expenses. If you have Facebook please go check them out. Pass the info along to everyone you know!!!!!!

Beaux Babies

Tell them we sent you.

Monday, November 29, 2010

Many Have Asked

Many have sent private messages on text and facebook and email asking how they can help.

Prayer is number one! The power of prayer is unbeatable.

Research Mitochondrial Disease and be an ambassador of knowledge for all of those affected by Mito. Share what you know. Ask questions for what you don't know.

Assistance for when we are in the hospital, etc. We each have talents. We ask that occasionally you share your talents with our family. :)

Keep leaving messages. We love love love to read all the support and love and care.

We need to fundraise to help offset some of the uncovered costs. If anyone has an expertise in this we would appreciate the help. We are so busy with daily life that fundraising is always an after thought but a necessary evil. We have paypal set up on our blog if you want to share that. We also have a fundraiser started on Give Forward. You can share that link on facebook, twitter, and your blog. We are also trying to figure out tshirt and arm band sales for after the new year.

Saturday, November 27, 2010

The report is in

We have our report with Delaneys diagnosis. If you would like to know what it says please visit

Update on the kids. Char is working super hard creatively and academically. She is almost completely finished with 8th grade. She has done several murals that I'm hoping to post soon. She has started sewing again and is planning some projects with fleece. Julia is also booming creatively and academically. She is getting super close to being done with 3rd grade. She is a whiz at math facts. She has been building with legos again and creating some masterpieces. I will have to take some pictures soon. Delaney has pneumonia and a kidney infection. She is now on oxygen almost full time. However she is working diligently on putting on her own socks. She loves smoothing out her bed blankets and watching movies.

Wednesday, November 3, 2010

Uncle Chris

This is an old picture of Chris and Jess. They have been through a LOT together and in the end they always find their way back to one another's side. I know that Jess' heart overflows with love for her friend.

I wanted to let the girls Uncle Chris know in a very public way how much we love him. How proud of him we are. We all need pick me ups. We all need to know we are appreciated and are loved without condition. We all need to know that those around us notice and are proud of us. And I have the unique ability to do this for Chris in a very public way through my blog.

Chris has grown leaps and bounds this year. He has matured in a way that only "valleys" can do to you. He has accomplished more in his career this year than in previous years. He has worked hard to learn himself. He has been a great friend. His love for the girls is felt from thousands of miles away. He is constantly texting words of love and encouragement. He skypes them. When he comes in town he ALWAYS blocks out time to just spend with the girls. Recently he sent us a request to have the girls watch the Katy Perry music video of Firework. He wanted the girls to know they are fireworks. They are amazing. He is THAT type of guy. He is loving and caring and growing.

Here is Chris with Delaney in July

Here is Chris with Julia at Christmas 2009

Here is another with Delaney in Mexico...poor girl was exhausted and Chris just sat with her and snuggled her

This is an amazing photo of Charlotte with Chris...walking down the isle at Bill's wedding

This is a photo of Chris on yeah seriously DEXTER! Totally cool and totally proud of him :)

And here is the video he wanted our girls to see and hear.

Monday, November 1, 2010

Sleep Study

For those of you that don't follow Delaney's carepage here are some images from last night's sleep study. It was a horrible experience.

Thursday, October 28, 2010


Wednesday, October 27, 2010


Our family is part of a very special world. With Jess working in the NICU where unfortunately some babies don't make it and Delaney is friends with several children that struggle with health we are often reminded that life is all too short. We talk a LOT to the girls about God and life and appreciation of life and building relationships and that ALL relationships take work. We talk about making words count and building relationships. We talk about how God is with us. God is constantly showing us our path. It's up to us to sit in the silence long enough to hear the message. We talk about not taking life for granted. Learning. Living. Laughing. Loving. Giving. With all of our selves. Realizing that life is just too short to give half effort in any of those things. We don't focus on death AT ALL. In fact death is rarely discussed. We talk about LIFE. We talk about LIVING. We talk about God and finding our peace in God. We talk about believing and faith.

Today we talked a lot about ALL of these things. We took a walk to downtown Overland Park to visit a new restaurant. We walked half a mile there and half a mile back. It's called the Shake Shack. It's all local, organic, and sustainable. Infact, while we were there a local farmer brought in his tomatoes. They sell burgers, hotdogs, salmon sandwiches, and veggie burgers. They also have fries, onion rings, and shakes. Everything is local, organic, and sustainable. Everything! The place is set up like a 1950s diner with everyone eating at the counter top while sitting on stools. We enjoyed the fall day. We talked about local products. We got some exercise. And we enjoyed laughter, singing, and good food.

Life is short my friend. When you look back on your life will you regret what has happened over the years? The decisions you've made? The effort you have put into relationships? The mean or made up things you've said about others? Or will you look back and say that overall you've put your best effort towards relationships and words and decisions??

No one is perfect but we are trying to be more conscious of the things we say, the decisions we make, the relationships we keep. We challenge you to do the same.

Monday, October 25, 2010

Charlotte's Poem for Jess

Charlotte's poem for Jess

Twas the night before Wednesday
And all through the house
We prepared for Mom time
Even her spouse

Homework done
Top Model recorded
Just for her we have
All this love hoarded

We make sure we have pop
And Chef Boyardee pizza
And all of Mommy's
Favorite treatas

Tomorrow will be swell
Won't it be nice
To fill Mommy's cup
With tea, water, and ice

We love our mommy
She's the best
But before mom day
We need our rest

Good night!

Friday, October 22, 2010

Purple Stride 2010

We gathered together on October 16th and 17th to honor Sandy Stewart. Our daughter, sister, aunt, cousin, and friend. We gathered as a family to pay tribute. We felt the hole our lives now have because you are not here. We felt the love you still send us all. We laughed. We cried. We told stories. We will continue to honor you, Sandy, in our daily lives. I am sad that I (Kathy) was unable to get to know you as fully as others did but you impacted most of my family so you impact me. We love you and we know you are shining down on all of us.