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.

Wednesday, December 17, 2008

Warning... high teardrop rating

I want to tell you up front that this entry is pretty heavy - particularly towards the end. I know that some people check this at work, and others just would like to have a little forewarning. I also wanted to let you know that you may want to preview this before showing your children. There will be a picture of Ellie after she died. It is not gory in any way, but it may effect people in different ways. It could be very appropriate for children, but you as the parents will need to decide how you want to deal with it. I promise you, I don't do this to torture you. (Although I have been accused of taking great pleasure in making people cry!) But you have been there with us through this, and on this anniversary, I would love to walk you through our footsteps.

So... John and I have been having this ongoing discussion of sorts. Today is only December 17, but technically it is the one year mark because Ellie died on a Wednesday. But when you get married on, say March 19 (which we did), you always celebrate your anniversary on March 19, not always on a Saturday. The real question is, what do you do when you each have a different preference? My love of special occasions leads me to say that you just have to celebrate it twice!

So, in honor of my sweet husband, and his weekly Wednesday reminder at 7:43 p.m... we have some special things going on today. When John and Ethan were out the door on their way to school, I slaved over my hot toaster oven and fixed cinnamon rolls. O.K., so I took the package out of the freezer and unwrapped it. (You know I don't bake!) We enjoyed our special treat while we watched the snow fall outside. It was so good of God to give us that today! We were sitting at our Christmasy table. (Do you recognize a couple of adorable little boys there in the background Aaron? Some of you may have read Aaron's comment. His son, Eli, the boy on the left, was diagnosed with stage IV NB and currently there is no evidence of disease. Yay!)


And then I spotted something. Do you see it?


Apparently Ethan thought the tree needed a little decorating. :-) I love that little boy!

This evening, at 7:43 p.m., we will light a special candle. I love the thought that even though her physical life stopped in that moment one year ago, her wonderfully unique Ellie light will burn for all eternity. I also love the symbolism of light as God's reflected glory. Your comments are all proof that my little girl reflected the glory of God in her short journey.

We will hold the drawing for Ellie's elephant after we light her candle this evening.

Not long ago, I realized that I never gave you all the full story of how Ellie died. I was not intending to hold it back from you, but in the moment things were just so raw. A part of me was also unsure if it was even appropriate at that time... I think that perhaps I was just saving it for such a time as this.

On Wednesday, December 19, 2007 God chose not to grant Ellie’s request to die in her sleep. Even while my heart broke, God’s loving wisdom was clearly evident as He gave Ellie – and us – what none of us knew that we needed.

At one point, in the middle of that long day, Ellie began having trouble breathing. John and I had been hovering around Ellie for hours, stroking her and whispering words of love into her ears. This photo was from during that time. She used to always stroke her ear when she was tired.


It was hard to tell if she even knew what we were saying, but one time after John had whispered “I love you,” Ellie didn’t even open her eyes, but whispered right back “I love you too, Daddy.” We had been afraid of panicking her by telling her outright that she could let go, but as Ellie began to show signs of getting really uncomfortable, John and I told her how proud we were of her. We assured her that she had fought hard, but that she didn’t have to keep fighting. We told her that we would be o.k. We let her go.


But Ellie didn’t die. The drugs took hold, and Ellie fell asleep as her breathing evened out. As she slept, we noticed that one of her hands was opening and closing against her stomach. John slipped his fingers into her hand, and she gripped it tight.



After a couple of hours, Ellie awoke with a start. Her eyes were wild and she was hallucinating. We gave her a remedy, and Ellie’s eyes cleared. Then began the most unnerving, profound, and powerful phenomenon – Ellie let go. But she did it in typical Ellie style – with fight and with spirit. She would have bouts of screaming – not in pain, but almost in anger. She would give a mighty shriek and yell “I’m not going to do this for the rest of my life!!” or “this is torture, and I’M NOT GOING TO DO IT ANYMORE!” Her strength finally gave out, and Ellie lay on her side, facing her daddy. His was the first face that Ellie saw when she entered the world, and it was the last one that she saw as she left. I was exactly where I wanted to be – next to her ear. The last thing that Ellie heard was my voice telling her to run to Jesus. And she did. Ellie gave up her own heartbeat in exchange for the heartbeat of God.

You know, all along, I knew that even though we prayed that Ellie would live, it might not be what would happen. I understood the concept that we don't always get what we ask for. But when it came to Ellie's desire to die in her sleep, I could think of no reason why God shouldn't give her that. Once again, God whispered ever so gently to my broken heart that He truly does know what is best for us, and most importantly, for Ellie. The words He used, and the voice were in the form of Loretta. Something that she said during the Montana memorial service has reverberated through my being ever since. "Cancer did not steal Ellie’s life away from her while she slept." Wow. We had the privilege of watching our daughter release her own life.

John took this picture while she was resting:


This one was taken after she died. I'm sure you remember my entry on December 20, 2007 about John weeping over Ellie's feet.


Also found in the December 20 post is the description of Ethan's grief over Ellie's body.


We chose to have Ellie cremated. Before we took her body to the funeral home that night, I dressed her in this beautiful Chinese robe that my sweet step sister Jenn brought to us when they adopted their daughter Emma. We sent "Procedure Bunny" along for one final procedure...


That night, I called Jenn to tell her that Ellie had died and that we were having her cremated in the China robe. We talked and cried for a little while. Jenn was just leaving work and it was quite late at night in Florida. She went home that night and saw that her three little girls were sound asleep. When she tiptoed in to kiss them goodnight, Jenn found her older two, Mady and Libby, snuggled in their Chinese robes! Jenn asked her husband Jim why on earth they were sleeping in those robes because, in her words "they had to find them waded up in a corner somewhere since they hadn't even touched them in quite sometime." Jim said that after he gave them their bath, the girls found and put on those robes and would not take them off, even to sleep. He had no idea why. Jenn said that the next morning, the robes were tossed back into the nether reaches of the closet or wherever they had found them. That story just blew me away. God is so good to bind us to our loved ones with an invisible thread that has the ability to erase thousands of miles as if it was nothing. This story touched me to my very toes and will stay with me forever.

I don't want to leave you with that last picture of Ellie. It is how she looked when she left this earth. But we picked the photo on the header of this blog because it reminds us of Heaven. That is how we see Ellie in our mind's eye. Vibrant, glowing with joy, and more alive than she ever was in her nine short years in our arms.

This is how we see her now... on top of the world!


My life will forever be blessed by the time I had to hold her and love her.

Please scroll down to the previous post for details of our on-going blog giveaway. For those of you who have already left comments, feel free to comment on this post again... just remind me that you already entered the giveaway. Thanks. :-)

Also... please keep checking back. There will be at least one new post everyday through Friday. I have something very special planned for tomorrow!


At 12:19 PM, Blogger Sheila said...

Oh Elle! I love you. I miss you. I never met you, but you have touched my life. You were, and still are, a miracle.

At 12:42 PM, Anonymous Mike Stark said...

You were right...no dry eyes here. Always in my prayers dear Skees family...
-Mike Stark, Blairstown, NJ

At 1:02 PM, Blogger Kimberley said...

Yup, tears here. And lots of them.

Those were the most touching photos I think I have ever seen. They do not show pain but instead there is a calmness, a strength and an overwhelming sense of love and trust.
I admire your faith so much, and that you were truly able to entrust Ellie to the Lord, knowing that He knows her best.

I know the next few days are going to be difficult for you all, so I am sending warm thoughts and prayers your way.
You are an amazing woman Sarah.

I have no more words, Kimberley xx

At 1:40 PM, Blogger Rach said...

This was beautiful, absolutely beautiful. I haven't cried much over my own loss, but this is so profound I have found myself weeping for you, for the beauty of your words, for your loss. What a gorgeous tribute to an amazing spirit.

Thank you for sharing your heart with us.

At 1:56 PM, Anonymous Anonymous said...

This is Aubrey Myers here. I am 9 years old and live in Sanford,FL. I love Ellie, she was my BFF. I loved playing at her house with her. It was special to be able to visit her in the hospital when she first got sick. One time before Ellie got sick, we got stuck in my room and the door would not open. We had to wait for a looong time. Ellie stuck her fingers out of the bottom of the door and said " we are hungry, we need food." That was soo funny!!! I miss you Ellie! LOVE, AUBREY

At 2:13 PM, Blogger Becky K. said...

Thanks for the warning. I tried to steel myself...I spent this morning in tears of grief missing my Dad...so I thought, "I'll be tough...no tears"...but alas they are dripping all over my desk.

I kept thinking of the song that is currently at the top of my playlist by the Collingsworth Family...I Can Trust Jesus...it says so much of what you said in this post. So perfect. I have not been able to stop listening to it. The truths are so great.

Thank you for sharing such personal memories. I could not post earlier because I did not know how I could possibly intrude on such a time as this...but you have made it impossible not to. Your openness and loving are so wonderful.

I will never, ever forget this sweet girl who made such an impact on our lives and those of so many...from a distance and unaware.
Thank you, Sarah.

At 3:06 PM, Blogger The Morris Family said...

Comfort, blessings, and may His presence embrace you all, my grieving sister....I know as well!

At 3:18 PM, Blogger Kelley said...

That was really beautiful, Sarah! Thank you for sharing!

At 3:39 PM, Blogger LindaSueBuhl said...

Tears - either again or more I cannot figure out which. I love you,Skees -all four of you have changed me.

At 4:48 PM, Anonymous Anonymous said...

Thank you.... Sharon

At 5:29 PM, Anonymous Anonymous said...

Thank you so much for sharing. Your joy mixed with sorrow has continually amazed and blessed me. Although I only met Ellie as a little baby, I have loved getting to know her through you. I can't even begin to express how you continue to help me grow closer to God. :) Ellie, you are amazing, and I can't wait to meet you!!

At 5:56 PM, Blogger oneofhisfriends said...

Dear Sarah,

You and John remind me of the amazing things God does for us because of Christ. Your witness of your care and preparation of Ellie, for the trip home; the leaving of this foreign land for our place of citizenship, is a witness of His care for all of His who leave this earth. Whether one is 9 years old or 99, it's all the same in the big picture of eternity; it's in The Book.

Your sharing with us of Ellie's illness and her journey home is a modern version of Psalm 23. Truly, these are tidings of comfort and joy; let the tears fall.

The LORD is my shepherd; I shall not want.
He maketh me to lie down in green pastures: he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

My name's already in the hat.

At 6:06 PM, Blogger Sarah said...

Hi Sarah, John and Ethan,

This is your second cousin Ellen Skees O'Brien from Elizabethtown, Ky. I meet you all the February before Ellie got sick. I am Tony's daughters. I can see you all now. My sisters and cousins Becka and Anne I think were with me at your Dad's house (Stanley's in Stanford, FL.)

I have been reading the blog off and on the past 15 months. Ellie was the lucky one, your blog is so full of love for Ellie and your family. I felt like I was right there with you by reading the blog. You are very gifted with your writings. I want to thank you for letting me and others to read and feel apart of you life. I know it was very hard sometimes to write. The pictures were so touching. Your family was so very blessed to have the special memories of a young ladies filled with the love of God.

My brother Tim had two children die when one was 2 years old and the other 4 months old of a rare lung disease. Yes, they had some personality, but not what Ellie had. Ellie just had the smile you fell in love with.

WOW. Thank you so very much for touching my life.

I can feel Ellie dancing around us right now. God is enjoying her. They are celebrating her life in Heaven now. God Bless you and your family. Give Ethan a big hug from me. Someday we will have to get out to Montana to see all the Florida Skees.

May you and your families have a Christmas that will be special in your hearts and know we are thinking of you.
All our Love
Kentucky Cousins,
Ellen Skees O'Brien

At 7:12 PM, Blogger Amy said...

Thank-you so much for sharing this with us Sarah, what a privilege.
My name is already in the hat.

At 7:43 PM, Blogger Robyn said...

Wow. Its hard to know where to start, but thank you Sarah, John and Ethan for being so open and sharing your daughter and sister. Ellie was and is so beautiful.
You all have been in my thoughts and prayers, especially as this anniversary approaches. I'm so glad that you're doing something "very Ellie-like" to celebrate her life.
Btw,tears are flowing and my girls have had extra cuddles...for which I thank you from the bottom of my heart.

At 8:56 PM, Blogger c.g. said...

"Put thou my tears into thy bottle: are they not in thy book?" - Psalms

"High teardrop rating"

Ellie's little foot in her dad's loving hands is such a powerful
picture of love.

much love to each of you.

At 10:00 PM, Blogger Alice said...

Dear Sarah, Thanks so much for sharing the breathtaking beauty of Ellie, and your family's love for each other, with us.

I miss you Ellie!! I'm so glad I got to meet you once, and will see you again and get to know you much better!

Alice Corbett

At 10:34 PM, Blogger Sarah said...

Hi Sarah,
I am Sarah from Mesa, Arizona. I found your blog through team bettendorf and have come often since.

I am so inspired by you and your family. Your light shines so brightly. You radiate Christ in such a beautiful way, as did Ellie. You are a clear example of what the Bible says "we do not grieve as those who have no hope" (1 Thess 4:13).
Thank you so much for sharing your devastating, beautiful life with us. You inspire me to be a better, more grateful wife, mother and daughter to the King.

Love in Christ,

John 14:27:

"Peace I leave with you; My peace I give to you; not as the world gives do I give to you. Do not let your heart be troubled, nor let it be fearful.

At 11:24 PM, Blogger Grant & Tracey Whidden said...

I don't know how anyone can NOT have tears streaming down their face after reading your post. Thank you so much for sharing your heart and some of those precious details from Ellie's last day here on earth. I sometimes find myself hesitant to read an emotional post, but then I end up diving right in because I know I'll be blessed through it. I guess I just know ahead of time that I'll end up grieving with you over Ellie, but I also know that all grief usually brings up past griefs...and then I feel overwhelmed. But in a good way, mind you. :) I immediately have thoughts and memories of my daddy, as well as overwhelming grief of the loss of our Khalia and Malei along with our other baby losses. But I know tears are freeing and healing. So thank you for making me cry. :)

Praying for you guys at this time! I'm off to kiss my girls one last time before I head to bed.

Sending a hug from miles away,
Love, Tracey

At 12:23 AM, Blogger BreezieGirl said...

Thank you for the warning and the story...

Ellie truly was a fighter to the last... and the beginning.

Many prayers...

(already entered)

At 7:41 AM, Blogger Sarah said...

Dear Sarah,
I am a friend of Belinda and Neal. I first read your blog when Ellie was at Sloan Kettering, that was the last time. It broke my heart. My life has been full of sadness and I could not cope with being drawn in to share your pain. Of course I thought of you often during that time. I read your blog this morning at Belinda's request. Truly I did not want to read it, but out of friendship I braced myself and I signed on. As expected you made me cry (I do not cry easily due to years of training :) )but you gave me a blessing and I wanted you to know that. You are remarkable and a gifted writer from what I can see. You are an inspiration and a reminder of what the human spirit can endure and keep shining. Thank you for the blessing you have given to me at this very special time of year. I lent Belinda a book shortly after Ellie's death, hoping that she would find comfort. I can't remember which one it was but the author is Max Lucado, and there is a section there about his description of what heaven must be like. This has been a comfort to me. Maybe Belinda can copy it and send it to you, it's awesome.
Sarah I wish you and yours a very Merry Christmas.
God Bless You.

At 7:49 AM, Anonymous Anonymous said...

Sarah, Johnny and Ethan,

Thank you for sharing Elle with us. Elle has been a blessing to us all even after her passing to Heaven. I look forward to seeing her one day and telling her although her life was short here on earth her memory was etched forever in our hearts.

Your blog has been such a blessing. It is an on going book that I love to pick up periodically. It's never ending. It is happy, sad, honest, and real. I enjoy your insight and how God's word in revealed in your live. I see Stan in Johnny and both Elle and Ethan are both an apple off that same tree - sensitive, caring, fun-loving, adventurous.

Have a blessed day as you remember Elle on her new life graduation day!

Nancy Martens, Snellville, GA

At 8:34 AM, Anonymous Anonymous said...

That's how I see her, too, Sarah. Alive and on top of the world,Sheri

At 10:01 AM, Blogger Sarah said...


It seems strange that my favorite blog is for someone I have never met but it is. Thank you for your honesty, for your openness, for sharing not only Ellie's story but yours, John's and Ethan's. I have printed more things from your site than any other. Each description, event, picture tells me where (and how) you are.

And I have prayed for you.

This is not said flippantly. When I looked recently, you had requested knowing who some of us are that check on you and how we found you. Over a year and a half ago, I (in southwest Michigan) received an email (from New Jersey) asking for prayer for your family. If I remember correctly, it said you were missionaries with New Tribes Missions. I am quite familiar with this agency and am myself a missionary with Child Evangelism Fellowship. Prayer is understood and vital. Especially tomorrow.

I had tried to respond on your blog site quite awhile back so I was glad you included your email address. I enjoy seeing your love for your family, the way you word things, your willingness to write the ups and downs, the wisdom you have in talking with Ethan, and seeing God at work in you.

A response is not expected (unless you want to) as I'm sure you have plenty going on in your life! I just wanted you to know how much I appreciate your site and your heart.

May God give you strength and joy in your days ahead. And may you see the blessings He sends you daily.


At 8:31 PM, Blogger Allison said...

Tears from here also, Thank you so much for sharing such intimate details and pictures with us. Thanks for the warning. Allison

At 12:27 AM, Anonymous Anonymous said...

Wow.. i cant even talk after reading this entry. The only word I can think of is..profound. I dont even know what to say. God bless your family.

Melissa from Indiana

At 11:04 PM, Blogger Keri said...

I have tears flowing down my face. I don't have words. I somehow found your blog through the China Adoption Community. I have been following Ellie's journey since you were in FL. She was an amazing child.


At 10:35 AM, Anonymous Anonymous said...

I am so glad to be able to find your blog again. It is beutiful to remember her. I love how you dressed her with her chinese gown. Thinking of you all !
Diana Learned


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