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.

Thursday, November 15, 2007


Sometimes I get to writing things down and don't always pay close attention to how they come out, or might make someone else feel. I try to pay attention, but from time to time things slip past me. And sometimes more important than what I do say, is what I don't say. One of the hardest things about this year for me has been having to make the difficult decisions in spite of making other people feel badly. Even though I have done my best to be honest with you all, I haven't always told you everything that has happened or given all of our reasons for what we do. I am not sorry for that, because some things simply do not need to be told, but by some of my omissions, I have possibly caused confusion and misunderstanding, and I don't want to do that.

First of all, I now realize, in hind sight, that I should have offered a more lengthy explanation of why Chad came alone to Montana. I was trying to shorten it into something generic, but I ended up making light of the sacrifice that Janeene made in staying in Florida with the kids as well as not giving you the full truth. Many times we have had to make hard decisions over this past year, and one of the things that we have been very careful about is germs. We have found that young children who are developing their immune systems can be the greatest risk. As Ellie's counts drop, a virus can easily be the thing to take her out. I spent some time on the phone with Chad, and expressed our concern (because as of a couple of days ago we were entertaining that very small chance that things would get worse before they might get better) and asked if he was planning on coming immediately, that Elijah not come. They were so gracious to us. I'm sorry that I glossed over something so important for the sake of brevity.

Another excruciating decision that we have had to make, is that of telling our parents to hold off on coming during this time. I need to make it clear to you that all of our parents would be here in a heartbeat if we said the word. Our reasoning hearkens back to the days of the ICU. I discovered then how hard it was to see the ugly side of cancer and of dying. I also realized how hard it was for me to deal with my own pain and stay strong for Ellie while being impacted by the grief of our parents (because of how weak and overwhelmed I felt). Until Ellie takes her last breath, I may not fully give in to my grief. I feel it in small pieces every day, but I mostly must fight. This time, like the ICU, is such a time of working and fighting. Mom and Gary and Stan and Pat have been with us from the beginning - providing comfort in the hospital, caring for Ethan, and giving support in so many ways. So many people have come to our aid over the course of this past year, that I have begun to feel like we use people up for a living. Right now we are leaning on those with the technical know-how to get us through this final journey. Not because they are closer to Ellie than her grandparents, but because we need their help. Everyone in our lives have had a specific role over this year, and they have all fulfilled that role with such love. We have never intended for any to over-shadow another. We are forever grateful to all, but right now I would ask that you would pray specifically for Ellie's grandparents. Their hearts are broken as they are only able to wait. Please pray that God Himself would wrap them in His loving arms and comfort their aching hearts!


At 9:06 PM, Anonymous Anonymous said...

Sarah and John,
I just want you guys to know how loved you are. In the midst of all of your pain, your are such a testominy for God.
I put 2 books in your mailbox this afternoon. Cody picked out the western book for Ethan and Bailey picked out the other one for Ellie.
God Bless!
The Johnsons

At 9:17 PM, Blogger Sheila said...

I will be praying! Our whole family is praying. My God be with you, and I pray that he will encompass you and everyone in your family with His amazing peace.

In Christ Alone,

At 11:40 PM, Anonymous Anonymous said...

Words from our Savior....

“Peace I leave with you, My peace I give to you. Not as the world gives do I give to you”

John 14:27

At 11:54 PM, Anonymous Anonymous said...

Amen! Amen! Our prayers are that you will be able to maintain and be strong as you need to be.
Sarah you are blessed beyond measure with wisdom. Press on my friend. We will all be lifting you all in prayer.

At 5:49 AM, Blogger LindaSueBuhl said...

As always, I write with tears and amazement - your family is so open and love. The grandparents will definitely be prayed for,few things are harder than "waiting" - those few things include being the decisionmakers for a seriously ill loved one. You, Sarah, and John have the primary responsbility and have shown such grace. We continue to pray. OH - I heard from a blog friend that a college roommate of hers was asked to pray for a sweet family with a child who was very ill - a little girl named Ellie Skees. The Lord continues to show us - we are all connected through Him. Blessed assurance, Jesus is OURS.

At 6:07 AM, Anonymous Anonymous said...

Dear Friends, I think it's time for me to comment as I have been praying for you and following your blog since last September (thanks to Carol Mahan). All I can say is that God is good and loves you all very much. Thank you for "keeping the faith." I'm sure it hasn't been easy.
Love and prayers in Christ,

Shirley Holmquist, Michigan

At 6:39 AM, Blogger Mandy Caley said...

Praying and praying for you all, people here at HQ and at church, so many people love you.
May God uphold you
MUCH love from us Caleys
PS Andrew says a special hello to Ellie today

At 7:04 AM, Anonymous Amy said...

Hello Sarah and John,
I have been reading your blog and praying for you for around a year now. I found you through Tricia's blog. I just wanted you to know that my bible study group and I are praying for you in Australia. I have spent the last couple of days looking back over all the photos and videos. Ellie is very like my daughter Jossie who is eight. Thank-you for the wonderful witness and encouragement your blog has been. I feel like I know you all, and we send our love to you from the other side of the world.

At 7:46 AM, Anonymous Anonymous said...

I don't know if you remember me, but I just wanted you to know that since we were living for a while in Venezuela with our kids and grand kids and heard them pray daily for Ellie, I have been praying and reading your blog. My heart aches for you and your blog has meant much to me. I, along with Marshall and Jaden and the whole family will continue to pray.
Jana Price

At 8:26 AM, Anonymous Anonymous said...

You do not need to clarify, do not worry right now about others feelings or anything other than Ellie, Ethan, John and Yourself. You have to be the fighter there will be time for mourning later but stick to your plan she is very much alive. We will pray for your strength and wisdom during these difficult times. You are the Proverbs 31 Woman!!

At 9:09 AM, Anonymous Anonymous said...

I love you all so much, and am praying for your whole family. My heart breaks along with yours. As your friend and sister in Christ I count it as a privilege to have laughed with you, cried with you, and to have been there in any way that you have wanted or needed over the past year. You are amazing. For you to be thinking of others at this time, it shows the capacity that God has given your heart. Thank you for the gift of sharing your journey. God has used it to touch so many lives.
Love you,

At 9:27 AM, Anonymous Anonymous said...

All the missionaries in Venezuela are praying for you!

At 10:13 AM, Anonymous Anonymous said...

We have never met you...however you are indeed our family in Christ. I would love to have met Ellie, my daughter is the same age. You and your family are always in our prayers - me especially, she is a doll, and you are a true witness of strength.
Blessing to you always. - Mike Stark and The Stark Family, Blairstown, NJ

At 12:31 PM, Blogger "Bug" said...

Praying without ceasing....We love you all.
Roger, Debbie & Kaeli

At 2:21 PM, Anonymous Anonymous said...

we love you and are continuing to pray for all of you. we want to do more but we do not know what.please let us know if there is anything we can do. we pray for God to give you strength and wisdom and for you to feel Gods loving arms around all of you. love simons family

At 3:08 PM, Anonymous Anonymous said...

This post has made me even more amazed at your family's beauty and love. I'm overwhelmed that you would take such care and time to write a "clarification" so as not to hurt others. It shows a true love of Christ and his character in you. I hope others will see that. I pray that the Lord would bless you and keep you. Many friends pray for you.

At 8:23 PM, Anonymous Anonymous said...

I have been reading your blog for the past 6 months. I stumbled upon it and it has really changed my thinking. I Think you are such an encouraging mother and I desire to cherish the time that I am given with my own children. I have been praying for you daily and I will continue to pray for your strength and for sweet Ellie's comfort and for the grandparents. Every entry you always amaze me. The other night when I read your entry I just sat and cried, I feel as though I have known you forever you are so open and honest.

At 10:47 PM, Blogger jeff said...

Dear John & Sarah,
I never wrote to you before, but I have been following this for about a year now. My name is Jeff Sullo. My inlaws - Jack and Ruth Spender - are friends with Darla, and she's the one that sent me the link to this site when you first started this journey.
My wife, Bethany, just died of Leukemia 2 weeks ago. She was 26.
You're probably starting to feel kinda numb right now with all that's going on, like it's all surreal. Where will you go from here? What to do with her things? How do you deal with the end of this road that has engrossed your life for the past year or so? Why is she going before you & your husband?
I'm still dealing with questions like these myself.
I'm so sorry you have to go through this. Possibly the hardest event you will ever go through in your life. But I have to say that you 2 are really dealing with it amazingly. Hold on. Hold tight. The Lord will not let you go. He's holding you tight.
One of the last things Bethany said before slipping into a coma was "God, you have a plan - and it's good." I've held onto that truth. It's all I have. And it's all you have. And you are doing it already.
You never have to say "Goodbye" to Ellie, only "See you later". That fact brings comfort. Heaven is an amazing place. Bethany knows that now, and Ellie will know it soon. A place with no more pain. No more tears. No more suffering. A life without the fear and pain of this world.

Ellie will be well.

It's us that are the messes. It's so hard to be left behind. so hard. But God is good even through this.


At 11:00 PM, Blogger Ruth said...

We love you and are praying for you. Love from the Kime Family.

At 7:08 PM, Anonymous Deborah said...


Hello! I want you to know that I have been praying for you all. It is nice to be able to get online and keep up with everything from Australia.

Aaron & Deborah (Stout)Brine

At 8:08 PM, Anonymous Kristina said...

EVERY single time I read your blog my soul is better for it. My heart breaks for you and John. Thank you for every detail you share. It is precious Ellie is drawing pictures for you and dating them. I would imagine she is much more aware than any of us think. I am praying for you. I have no idea what you are going through in every momement of every day. Keep leaning in hard on your Heavenly Father who is good and dependable at the end of every single day.
Feeling great heartache for you and admiring you greatly!!!

At 11:06 PM, Anonymous Jen Johnson said...

Just turning in for the night but thought I would say "Goodnight Skees family" first. Hope you have enjoyed your time together as a family the past 2 days. Bailey misses Ellie, she asked if she could take her American girl doll with her to church because it always reminds her to pray for Ellie.
Praying for you always.......

At 1:25 AM, Anonymous Anonymous said...


O God, hear my cry;
I’m holding on tight,
I won’t let go.
I’ll show you that I’m strong enough
to hold on to this string.

I refuse to give up and
I refuse to slow down.
I’ll keep a firm grip
and I’ll always believe.

But then in the quiet,
I hear Your voice:
“Let go, my child,
give her entirely to me.

“Only when you’ve let your balloon
soar to the heavens,
when your trust is complete,
can this miracle unfold.

“I’m not asking you to give up and
I’m not asking you to give in.
I’m asking you to believe.
In fact, letting go takes more strength
than holding on.

“Once you release
my Grace will rain down
and fill any emptiness
with my indescribable peace.

“Your daughter is safe in my arms –
I would never let her fall.
I’m going to lift her high
and free her from this pain.”

With tears streaming down my face
I bow my head
and lift my hand
and with all my strength, and all my heart,
I release.

I stand there in awe
As she flies above;
I realize she was never mine,
but was given to me as a precious gift.

Thank you, Lord
I have learned to trust
and to release.

I wrote this with Ellie in mind, and from my experience with Gloria Strauss.

May God Bless and hold you,

Jessica Morley

At 6:53 AM, Blogger Pratt resident said...

We pray for Ellie to be free of pain, and for you to find peace and comfort in His Grace.

At 3:53 PM, Blogger oneofhisfriends said...

Hi John, Sarah, Ellie and Ethan,

Just a word to let you know that, today, Monday, November 19, whether you publish posts or not, you remain in my prayers.

He will guide the humble in justice.
He will teach the humble his way.
Psalm 25:9



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