We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Monday, September 29, 2008

Happy Birthday Ellie!

Ten years ago, I was in labor. I was miserable, but it was worth it because I was about to hold the most amazing little girl that I have ever met. I thought that labor would be the most painful thing I would ever have to endure. I was so wrong. But I also underestimated the joy factor! I think that we packed in an entire lifetime's worth of love and joy into nine short years.

This is Ellie's first birthday in Heaven, and while it is bittersweet for us, I know that it is full of the kind of endless joy that bubbles over into the very depths of her soul. I just know that soul birthdays have to be so much better than physical birthdays!

We are going into our third day of non-stop celebrating! (I don't know if anyone has noticed yet, but we don't tend to do things half way.)

Ellie's stone marker was ready on Thursday! This came about in a wonderful way on so many levels. Our families contributed money to buy us a better memorial to Ellie than we could ever imagine! The man at the masonry place gave us a huge stone. The people at a quarry gave us a number of smaller stones. And the guys at the sandblasting place bent over backwards to make sure that it was all done on time. The end result is astounding. We had Ellie's family come up with words to describe her, and those words were sandblasted into the stone. The smaller stone near the bottom of the marker has Ellie's name sandblasted into it. And at the very bottom, do you see the small rock with "Pippin"? Pippin was Loretta's cat - Ellie's favorite - who is buried in the hole with half of Ellie's ashes. There is a very large stone on top of that grave, and the memorial stone is propped up against that rock. Belinda got a wonderful picture just after sunrise:


These are the words on the stone:
"Ninja Butterfly"

This reference was sandblasted into the right side of the stone: Psalm 63: 1, 7-8 (It is the reference for the verses from the origional blog header.) John wanted to make sure that someday when we are gone and someone looks at the stone, they will be able to see that Ellie belonged to God!

And the copper colored plaque in the middle says "Elizabeth Anne Skees September 29, 1998 to December 19, 2007" We plan to get a more permanent metal one that will have that on it along with "Our little Angel has left a lasting impression on our hearts."

The family made a beautiful flier with Ellie's picture and Scripture verses. They also wrote up an amazing description of Ellie, using all of the words that are on the stone, and then some! I'm sorry that these photos do not do it justice, but I wanted you to have a glimpse of the wonderful tribute...

Cover - they decided to use today's date instead of her birth year or date of death. This is all about our celebration of Ellie - today. I love that.


Inside. The verse above the picture is: "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jer. 29:11


The opposite page from the above picture says:

We remember our Ellie with joy and sadness...

She was a sweet, fun loving, tenderhearted, wise warrior. She had the ability to bring light and grace and joy with each playful hug or word. She enchanted us with her graceful dance and her ingenious imagination. Ellie was as adventurous as she was loving and her love and compassion flowed out toward all "critters". She devoured life in her vibrant and spirited ways. Innocence and exuberance dominated our little princess's being. Ellie was as a "Ninja Butterfly" - cautious and bold,
timid and tenacious - as she fought her fight and finished her race. And best of all, she was an endearing and devoted daughter, sister, granddaughter, niece, cousin and friend. We think of her and the hope that our Father promises with each rainbow that we see. Ellie was generous and peace-loving. Our precious and pretty little angel continues to give to us and leaves a deepening impression on our lives.

"Oh how great are God's riches and wisdom and knowledge! How impossible it is for us to understand his decisions and his ways! For who can know the Lord's thoughts? Who knows enough to give him advice? And who has given him so much that needs to pay it back? For everything comes from him and exists by his power and is intended for his glory. All glory to him forever! Amen."
Romans 11:33-36

Back Cover. The verse says: "You will surely forget your trouble, recalling it only as waters gone by." Job 11:16


On Saturday, we had a big family Barbecue. We were able to enjoy each other's company and visit the grave site. We had a little fire going for people to sit around. It was just a glorious evening! This is Kathy's picture of the beautiful backdrop of our party:


And this was the family - Reni always has her camera ready to document an event! (To all of our family who were not here, we missed you so much and we have fliers and pictures for you! Thank you for loving us and finding ways to make this day so special for us.)


Yesterday was just a day to hang out around the house. I have been trying to put together a quilt from Ellie's clothes, so I pulled out all of the squares and some of us sat around sewing them together. In the evening we had birthday cake for Ellie. Ethan was so cute. We were all sitting around eating cake and Ethan leaned over and said to me with a sweet smile, "Happy Birthday to Ellie." He then called out names in the room to get their attention and said it again.


Kathy brought temporary tattoos of fairies and butterflies as well as pirate ones for the guys. We had some fun putting those on in Ellie's honor! All of us, but Ethan. He was not pleased that I had them stuck to my shoulder. Kathy also brought lots and lots of glow sticks. Last year, for Ellie's birthday, we had a bunch of glow sticks. We pushed the furniture to the perimeter of the room, turned out the lights, and the kids got into the center and danced and played with their glow sticks. I remember sitting there in the dark and crying because I sort of knew that it would be Ellie's last birthday. Last night, after it was dark, we all went out into the yard and played around. Before going inside, everyone began throwing their glow sticks into a tall pine tree. They stuck in the branches and made it look like a gigantic Christmas tree. Ellie would totally approve! I was doing fine until I stood back to watch the festivities. Ellie's friend Bailey was dancing around in the yard with her glow sticks, and I watched her come over to the porch and grab the stuffed animal of Ellie's that we gave her after Ellie died. She took the snow leopard in her arms and went back out in the yard with her glow sticks. I don't know what was going on in Bailey's head, but in my mind she was just trying to include Ellie somehow. It is one little memory that I will file away with the others that I treasure.

These are a couple of Kathy's pictures from the evening (it was too hard to get one of the tree that would show up well - it was one of those things that you have to see in person).


I don't know if you can see it, but Ethan is stretched up as tall as he can get, trying to hold up the bottom of the last E.

Today dawned clear and cold and beautiful. John and I left to go out for breakfast before the sun was even up. I cried a little as we sat with our coffee and remembered Ellie. We are now back at home and the gang is all preparing for a hike. John had wanted to "bag a peak" and sprinkle some of Ellie's ashes, but the peak is covered in snow. The family (including Ethan, as we let him take the day off of school) is going to go on an easier hike instead. I will not be going. I am going out with my friend, Jen. I'm not sure exactly what we will do, but I just wanted to spend the day quietly.

Thank you all for your love and prayers. They really do make such a difference in our lives!

Saturday, September 27, 2008

My life as a country girl...

So the weirdest things seem to happen when I'm in my going-to-the-airport clothes. (If you care to take a walk down memory lane, you may recall the great burro fiasco of '07 - July 31, 2007, to be exact!)

For your enjoyment, I have included Ellie's illustration of my altercation with the burro and the bee.


We have had three sheep boarding on the property, eating the front pasture. We installed Ellie's memorial stone on the hill in that field on Thursday evening (which is another story unto itself, as we needed the help of a neighbor and his tractor to place the stone), and the sheep decided that it was their own personal playground. They even went so far as to lick the stone! The lady who owns the sheep agreed to come and pick them up. For those of you out there who have never seen what it takes to load three sheep into the back of a pickup truck... let's just say that it is not easy! Apparently sheep do not just naturally jump into trucks on their own volition. And if you think that seven people have a good shot at getting three sheep into said truck, you would be wrong. While I was getting ready for the airport run, the seven people were tromping all over the field, chasing those crazy animals from pillar to post. (I had not volunteered yet because I figured/hoped that my help would not be needed.) I finally realized that I should at least check on the progress. I walked out onto the driveway in my pretty red ballet flats, good jeans and going-to-town blouse. I was just in time to see Mike and Reni leave for the airport and watch Loretta slip and fall as two woolly creatures dashed past her. And the words that I did not want to hear were said: "Sarah, get in here. We need you." (You know they had to be desperate to say that!) I had one wistful thought towards home where my practical shoes were resting... and then I climbed through the fence.

What followed was about an hour and a half of following/pushing/chasing two little sheep from one side of the pasture to the other, and back. Stan was in the truck with the one ewe who had been unfortunate enough to be caught. Belinda, Loretta, Irene (the lady who owns the sheep) and I went after the other two. Loretta (aka, the sheep whisperer) was the only one who could get close enough. She would coo and cajole, and ever so slowly sneak closer. Until they would break away and find a way past the ranks. We would lunge left, lunge right, and then helplessly watch as the animals dashed past... all the way to the other end of the field. Ugh. This scenario went on and on and on. Finally, Loretta made a lightening fast move and grabbed the wilder of the two sheep. Together, La and that sheep rolled top over tail, down the hill, in a blur of white wool and blue jeans. I think it was the funniest thing I've ever seen! They came to a stop, right end up, La still firmly holding on to that animal. I was so impressed. Loretta blinked a couple of times, like she had just awoken from a bizarre dream. Belinda and I just stood there, stunned, not knowing what to do. Until Loretta found her voice and yelled "COME OVER HERE AND HELP ME!" Belinda and Irene took over from La, so that she and I could take off after the other sheep. This one was younger and much calmer than the other, and she headed right over to the ewe who was stuck in the truck. (Loretta's brilliant foresight paid off in a big way.) We finally pinned her between the truck and fence. La helped me figure out where and how to get a good hold on the wool, and while I pulled, La pushed... and into the truck she went! My foot only got stepped on once - by a nice hard hoof. (Are they called hooves? I don't know.) Stan drove the truck over to the other sheep, who complained loudly as she was hefted in with the other two tired animals. Irene made sure to get them into the shade and gave them some food and water before the journey home. Poor Loretta is battered and bruised all over! And I am pleased to tell you that the ballet flats made it through unscathed, as did my good jeans. (I might have shed a tear over the jeans. All I could think of as I was crouched down between the bumper and tire of the pickup, wrestling the sheep's head out from under the truck, was that I had better protect the jeans!)

Last year, there was a similar sheep wrangling adventure, but all I did was walk down the driveway to herd the sheep towards the truck. Ellie stood at the top of the driveway writing and drawing the whole thing in her journal. This is from that journal:


Thursday, September 25, 2008

Busy... and then Busier...

I'm sorry I haven't been posting much. Things have been extremely busy around here! We have been painting our house (and chairs) and cleaning up around the property. Thankfully, with lots of help, we were able to finish painting the outside of the house before the weather turned cold.

Ellie's birthday is coming up - on Monday - and a bunch of family are coming to celebrate. John had wanted to climb one of the peaks in Glacier National Park on Ellie's birthday, and sprinkle some of her ashes from the top. Unfortunately, late September is very definitely fall around these parts, and most of the mountains are covered in snow. So, Monday will probably include a nice easy family hike instead.

Both John's and my families went together and contributed to getting a beautiful stone marker for Ellie. We had Ellie cremated, and buried half of her ashes with Loretta's cat, Pippin (Ellie's favorite cat, who had to be put down two days after Ellie died. Ellie was devastated by the thought, so we waited until after she died). The site is on a hill on the property between our house and Mike and Reni's, where Ethan, Ellie, and their friends used to play. It is in the hollow of the roots of a tree. They used to make that their "fort." When we buried Ellie and Pippin, we placed a pile of rocks over the grave, but now we will have a beautiful stone to commemorate Ellie's life. I will definitely get pictures for you!

Please forgive my sporadic postings of late, and over the next week or so. Things are about to get even busier around here! But I will try to get pictures of our house for you as soon as possible. I can't wait to show you the beautiful finished product!

Friday, September 19, 2008


Thanks guys for all of the sweet comments and birthday wishes! It was fun sharing my birthday with you. I did have a great day from beginning to end. We got lots of painting done, and that continued into today. Ethan made me a sweet little card. I'll take pictures of it and post them. But not tonight. I'm beat tonight! I just wanted to quickly check in and tell you how much I appreciate you all.

Wednesday, September 17, 2008

Happy Birthday to Me!

I am 36 years old today!

I awoke to my cell phone playing "Happy Birthday..." because I am just that corny.

Then I found the birthday card that Ellie made for me last year. I hadn't looked at it in a while, so it was like receiving it all over again. I miss her so much!





What card doesn't need a pop up feather?

Then I got some coffee and turned on the computer to find all kinds of e-cards, text messages, and facebook birthday messages from friends and family! THANK YOU.

Today I plan to go to Bible Study this morning and Ethan's school open house this evening. In the in between time I will be painting the outside of my house! We've been working on it for days and we aren't anywhere near finished. But it's going to be beautiful, and that's what keeps me going. Everyone else just loves me... how sweet is that? Reni is planning a wonderful dinner and I've been told that there might even be cake! :-)

Yesterday John, his dad, and Ethan went to Ace Hardware to pick up some supplies and when they came back Ethan said "Mom, we got you something for your birthday." I was assuming that it was supplies for the window boxes that they were making me (which is exactly what I wanted for my birthday) but they pulled two wooden adirondak chairs off the truck. I have been looking for outdoor chairs to go with my new and beutiful outside color scheme and flower garden! I couldn't believe it. Now they have to be painted! I will give you pictures when it is all completed!

What a fine birthday this is turning out to be! By the way, I have a new hairstyle for my new year of life. Nothing quite as exciting as the "ragfro" (thanks for the term, Aaron - tell Isaiah Happy Birthday from me too) but just the thing that I needed. Oh, and I also wear reading glasses now. Hmmmm.

This is the best I could do with my webcam this morning!



Saturday, September 13, 2008

Today is National Childhood Cancer Awareness Day!

In July, President Bush signed The Caroline Pryce Walker Conquer Childhood Cancer Act.

News from The Children's Neuroblastoma Cancer Foundation:

"The Caroline Pryce Walker Conquer Childhood Cancer Act authorizes $30 million annually for five years to hasten advancements in pediatric cancer research. It creates a national database on childhood cancers to help researchers detect trends in the diseases, and provides educational and informational services to patients and families to ensure they have access to appropriate clinical treatment and the array of vital support services.

During markup of the bill in the House Energy and Commerce Committee, the legislation was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in honor of Pryce's daughter, Caroline, who lost her valiant battle against neuroblastoma in 1999 at the age of nine."

Here's how people can personally get involved in the fight against NB:

The Band of Parents Bound by Hope:
Donations can be made through this website, and they also have a gift shop where things can be purchased. (Many things have been made with artwork from children with NB. I plan to get some of Ellie's art in there to be used... I will let you know when I do that.)

"A group of ordinary parents bound by extraordinary circumstances founded the Band of Parents. Our mission is to raise money to further support and accelerate the research of the talented and dedicated team of doctors and scientists at Memorial Sloan-Kettering Cancer Center (MSKCC), the institution that treats more cases of Neuroblastoma than any other hospital in the world. Our kids' doctors are investigating exciting treatment options that they believe could help save more children with neuroblastoma.

The institution is working on several pioneering treatments including a humanized version of the 3F8 antibody, used exclusively at MSKCC. The mouse-based 3F8 antibody attaches to neuroblastoma cells and kills them. The antibody, developed by MSKCC's
Dr. Cheung, also trains a child's immune system to attack and kill neuroblastoma. Since first used in 1987, 3F8 treatment has greatly improved survival without lasting side effects. The mouse-based antibody’s primary drawback is that it can be rejected by the child’s own immune system (HAMA). It is believed a humanized version would alleviate this issue and make it more effective for a greater number of patients. The cost to develop this treatment is estimated to be just $2 – 3 million, a small sum by today’s standards."

The Lonliest Road

Last year, seven men road across the US on their bikes to raise funds for Neuroblastoma research. Two of those men have since lost their daughters to NB. Several have done another bike ride this year to continue to raise funds and awareness. Please check out their wonderful site!

What else can you do?
PRAY. Pray hard. There are thousands of families all over the world right now, fighting to save the lives of their children. And there are thousands like us, who are fighting to get through the day without our little ones...

Thank you for all that you have already done for our family! You have given to us, prayed for us, and supported us in many many ways. We can never thank you enough for your love and care.

Tuesday, September 09, 2008

Thanks from John

I'm so sorry that I forgot to tell you how much John loved his birthday "card" on the blog. He got to see it that night and it definitely made him emotional. He liked that you were able to hear some of his favorite songs. And all of your sweet comments meant so much to him. Thank you very much for helping John celebrate his birthday!

Monday, September 08, 2008

School Days...

Just a little update on Ethan...

He caught a cold, so he's already missed one day of school. I have a feeling he's going to be sick a lot this year. Thankfully he was feeling much better today, so I sent him to school.

Ethan is so funny about school. Every day when I pick him up and ask how it went, he says "it was good." And every morning when it's time to get ready for school, he says "I don't want to go." John tells Ethan that he doesn't want to go to work because he likes to stay home better, but it doesn't mean that he hates work. So we're still figuring it all out.

You know the obligatory "how was your day? What did you do?" from mom and the "O.K., I dunno..." from child at the end of every school day? Well ours goes something like this: "What did you do today at school Ethan?" He aways says "I colored something." Today when I picked him up, Ethan did a great job of staying next to the flag pole and waiting for his teacher to tell him that he could come to my car. He didn't even run to me when I got out of the car and stood on the sidewalk. I was so proud of him for listening and following the rules. As I was buckling Ethan in, he was smiling so big and wiggling with excitement. Before I even had a chance to ask, he said "I got to use the computer today!!" I asked him what he did on the computer. His answer: "I colored something." As I rolled my eyes and thought that this was going to be a long year, he added with a grin, "and I blew stuff up!" (Is it wrong that it was music to my ears?)

Tuesday, September 02, 2008

John is 39 years old today!


As a special treat, I have included a playlist of a few of John's favorite songs. The first song by Flyleaf is the ringtone on my cell phone for when John is calling me. The ringtone begins with the chorus "I'm alive!" and nearly scares me to death every time John calls me. But it is rather comical sometimes. The day that John and Ethan were on their big hike, Loretta, Reni and I were sitting around wondering when we should start to worry about them. It got later and later, then suddenly my phone started blaring "I'M ALIVE!!!" and we all burst out laughing.

"Beauty from Pain" is a song that has meant so much to John ever since he knew that Ellie was dying. We often still listen to it with tears.

Shawn McDonald's "Free" also makes John think of Ellie. John's cousin, Nick put a video of John and Ellie riding a motorcylce to that song. I really want to find a way to get that video on the blog, but just haven't done it yet.

"Keep Breathing" is a song that we saw on Youtube with photos of children with NB. That video is a tearjerker. Both of us love this song because that's what some days are like - you consider it a success if you manage to just keep breathing.

I'm sure that there are so many more songs that John would put on this playlist, but he's out hiking today (of course) and I'm doing this blog entry as a surprise for him. :-)

The playlist should work if you click "pop-out player" and then click where it tells you to launch standalone player. I hope it works for you! Then keep scrolling down to the next entry for some pictures of John!



John's Life in Pictures...

By now, if you didn't already know John in person, you have come to know him a little bit through my writings. I know that you have seen most of the following pictures already, but not all together. I thought that it would be fun to look at all the things that make John... John. (The very things that make me love him so much!)

He is definitely an outdoorsman!

John loves speed! (No, that's not his bike... he just wishes it was!)

What's better than speed on the ground? Free falling through the clouds, of course!


John is brother, uncle, and son to this wonderful group of people:
Russ, Ginger and Maddie Harris; Stan and Pat Skees


Of course, he's the best husband ever - to me!


He's a wonderful father of two:Photobucket




As I looked at the photos of John with each of the kids, I started seeing different qualities and roles that John has displayed as a dad...

As Ethan's Dad:

Instructing Daddy

Adventure Daddy

Strong Daddy

Helping Daddy

Snuggling Daddy

Supporting Daddy

As Ellie's Dad:

First time Daddy

First love Daddy

Nurturing Daddy
Playful Daddy



Procedure Daddy

Funny Daddy

Proud Daddy

Loving Daddy

Special Daddy

(They had been reading the Chronicles of Narnia together since Ellie was 5 years old)

Faithful Daddy

(He watched her take her first breath, and he held her hand as she took her last. When Ellie was born, she lay on her back, not crying, looking straight up at John's face. His face was also the last one she saw on this earth. This photo was taken during the last minutes of Ellie's life.)

"This is my beloved, and this is my friend."