Tuesday, January 15, 2008

Amazing Grace

"You gotta dance like nobody's watching, dream like you'll live forever, live like you think you're going to die tomorrow, and love like it's never going to hurt."
Meme Grifsters
(From the slideshow "Remembering Ellie".)


I came across this blog a few weeks ago.

The night I discovered it, I sat at the computer until 5:00 in the morning. Since then, I've spent snippets here and there, reading through the archives and crying 'til my eyes are swollen and my face hurts. Numerous times my mouth has dropped in wonder at the words on the screen. The site includes such incredible testimonies, written by Ellie's amazing mother, Sarah.

Her strength, her hope, her humor, her candor, her faith. Just HER. I sit here in awe of all she is.

It's amazing - to see God's grace at work in the life of someone who truly trusts Him with her whole heart and soul. Who believes in His plan and timing with everything she is. Who knows that her children are His children first and foremost, and who delights in His plan for their life, regardless of how painful that plan is as it unfolds before her each new day.

Ellie was diagnosed with a Neuroblastoma in September of 2006 and died on December 19th, before Christmas this year. She was just nine years old. But the example she set, in the face of suffering and death, was mature beyond her years. She exuded a strength and peace that only comes from God -- from knowing Him, from trusting in His will for your life, and from amazing parents who reaffirm and mirror His love back to you every day.

Here is a message from Sarah, written the day Ellie passed:


Another day...
Just wanted to check in and let you know that Ellie still continues to decline day by day. She is now at the point where sitting up or even lying down propped up hurts her back too much. Ellie spends her days completely in bed, and does not even have the energy to watch movies. There are brief moments in the day when we can talk and interact, but she tires quickly even of that. She has the desire to do small projects, but then puts them off to do later. Watching Ellie like this is heartbreaking, and we have begun to pray that it will be over soon for her. Thank you so much for your continued love and prayers. We could not make it through the days without them!

The latest...
Thank you all for the wonderful comments. We feel your love and prayers surrounding us like a blanket. I am not able to go to much length for now, but things are happening fast. Two hours ago, I thought that it would be over by now, but Ellie continues to hang on... if only by a thread. She has been nearly un-intelligible and her breathing is beginning to be affected. There have been some times of intense pain, but also of sweet peace. She is sleeping at the moment. Actually, just waking up now. Please please pray that this will be mercifully quick for our sweetheart! We love you all.

The Angels are Singing!
As of 7:45 p.m. Mountain Time, Ellie has been dancing in Heaven! She stayed asleep until 15 minutes before and then it wasn't exactly peaceful, but true to form, Ellie was fighting to the end. John and I were both with her at the end. I silently begged God to take her, and then said "run to Jesus, Ellie... run!" and it was over. I will have more to write later, but for now, please know that your prayers have been answered - it was unbelievably fast. Thank you all for your love!


I also wanted you to read Sarah's especially touching thank-you message, written just one day after her sweet daughter had left this earth to be in heaven with our Father. In it she opens her heart and describes her four-year old son's reaction to losing his beloved big sister:

Thank You!
Thank you all for the beautiful comments and emails. We are overwhelmed by your support and love! I cannot even describe to you the comfort that it gives me to see how God would cause one tiny little light to shine so brightly in the hearts of many.

I also stand amazed (although by now what God does shouldn't really surprise me anymore) by how many of you were praying for us yesterday - praying specifically that Ellie would go home quickly. I am convinced with my whole heart that your prayers were the reason that Ellie only had one terrible day. In the world of slow deaths, ONE terrible day is a miracle.

Since last night we have cried many many tears, but we have laughed just as hard. Thank you all for your concern for our little Ethan buddy. For days we have been talking to Ethan about the fact that Ellie was not getting better and that she would die soon. All day yesterday we allowed Ethan into the room with Ellie for short visits when things were peaceful. When he needed us, he could come - but then we made sure that he spent more time playing outside of the room. At one point, when Ethan was watching Ellie sleep, he said "I just want Ellie to die now and go to Heaven." We assured him that it was also what we wanted. (Children have such a special way of zeroing in on the one thing that the adults never have the nerve to admit!) We sat down in the rocking chair and prayed that God would take Ellie to Heaven very soon so that she wouldn't feel anymore pain.

Ethan promptly skipped off to play. In the evening, after Ellie was gone, and the harshness of our sobbing had softened, I went out to the living room and carried Ethan into the bedroom. On the way, I told him that Ellie had died. He was quite interested and perplexed over that, so I deposited him into John's lap on the bed. As Ethan sat there in his daddy's arms, he began to touch Ellie's face. He kept repeating "Ellie's dead? She's dead now? Right now?" He tried to open her eyelids. He kissed Ellie's face and hugged her head a few times, but then would continue his exploration of this new and terribly quiet sister. He yelled in Ellie's ear and poked her mouth trying to get her to communicate with him. He then lifted her hand and dropped it to see if that would elicit a response. Nothing... so back to the eyelids to see if he could get a reaction. Finally, after exhausting all attempts to find any sign of life, Ethan lay his head in my lap and sobbed. We held him and cried with him as we told him that we were sad and missed her too, but that Ellie no longer could feel pain. Ethan continued to cry much longer than I would have expected, but the sound of it was beautiful to me. Had he not discharged that much emotion, we would have seen it come out in other ways over the coming days.

Somehow, in the midst of all the pain, what I witnessed in that room was a beautiful thing. He fell asleep like an angel last night. Today Ethan has been playing with Ellie's toys and has claimed (at my urging) a number of her stuffed animals as his own. Every once in a while Ethan will say (in a rather chipper little voice) "I miss my Ellie." And tonight Ethan said "Mommy, I was sad when I was looking up at the stars because I was thinking of Ellie. So I asked God to send her back. He said no, and that made me sad."

We know that there are many hard days to come. We know that Ethan will push all of the limits of his boundaries and that his grief will take many forms. But we know that because of your loving prayers, our son has had the best possible beginning and understanding of an unthinkable situation.

So... how are we doing... really? I honestly don't know. I guess we are normal - which pretty much means crazy and unpredictable. For the moment I am mostly in the zone of feeling more relief than anything. The pressure and buildup have been un-bearable for me as we have been living in limbo, and so the whole relief of having it over has taken me to a new place of peace... for now. I fully realize that the worst of it is yet to come for me. I tend to break down over something, or when talking on the phone from time to time, but then my tears will dry and I will feel peace and joy again. I have not yet reached the place of despair - the gut wrenching "I-don't-even-want-to-live-anymore" place that we all know that I will need to dip into before time begins to soften the edges...

John, on the other hand, has been true to his nature and is grieving with all of the intensity that I have grown to know and appreciate in him. The beautiful Bible story of the woman who washed Jesus' feet with her tears has taken on a whole new meaning for us, as Ellie's feet were quite literally and lovingly washed with her daddy's tears. I believe that as of this moment, John has shed enough tears to have washed her entire body. I don't think that I will ever see anything in this life that will compare to the grief of a man for his child. I feel as though I have witnessed something so sacred and powerful... and it has given me a never before seen glimpse into the heart of God. To lose a child is unbearable, but for God to have willingly and purposefully chosen to send his only Son to this world to die a horrible death for me. There are no words...

This family - such a true reflection of God's amazing grace.

Their strength, their faith, their example of Christ's love at work in their life, at a time of such enormous pain and loss, is nothing short of astounding. And such a blessing and resounding testimony to others.

Ellie's memorial service was this morning. Please, as this little girl and her family come to mind today, take a few minutes to read some of their story and pray for them. Afterwards, you'll see Ellie's life - and the fullness and magnitude of it. Measured not in years, but in the number of people she reached for Jesus and the glory her unwavering faith brought to His name.

You'll lock yourself in the bathroom and cry into big soggy, shredded gobs of Kleenex. Then you'll run to hold tight to someone you love, and be profoundly aware of and thankful for all God has given you.


Val said...

Oh my....I was not ready for that. (You might need to put a disclaimer at the top.) I'm really speechless, amazed, in awe of God's grace...speechless.

It really makes me so thankful that my little girls have the health and energy to do all the things that frazzle me on a daily basis!

Well, I've worn a few holes into this tissue....

Kristy said...


I know. So sorry about that. Maybe I really should put some sort of a "warning" at the top. It is such a powerful and emotional story.

Every time I read a post from Ellie's mom, I get this giant knot in my throat. And the only thing that relieves it is a giant Bawl Session, ending in prayer.

Then I have to go squeeze the poo out of poor Sophs. Poor thing, she already knew her mom was nuts. This is just yet another confirmation.

But I guess that's God - using Ellie to touch even the life of a total stranger.

It's amazing, their faith. (That picture in the slideshow of them holding Ellie, right before she died that day, makes me sob. Oh, man.)

Kristie said...

Oh my goodness Kristy, I sobbed and sobbed this morning as I read this post. I to was not prepared for it, and Ive got all these crazy pregnancy hormones that make it 100x worse.

We just do not know how much we have to be thankful for and can only pray that if we ever had to endure such a heartwrenching experience that the Lord would give us such strength and grace. I went to the blog and read many more of her entrys throughout the day and OMG I cried at every single one I read.

I asked before but not sure you saw it, whats your email address? You can email me at mom2preston@gmail.com if you dont want to post it here.

Anonymous said...

Sometimes the internet really freaks me out. When I think about the fact that people could be reading about my life and I don't even know it--well, that's just more than a little strange. However, I have to admit that is what I am doing :). I started reading about, and praying for, Ellie about a year ago (because a friend of mine is a friend of her mom). It's been such a journey! And now, I've been reading about Sophie. I love your stories and I love your writing. It brings a smile to my face. :))
Anyway, I just wanted to essentially introduce myself, 'cuz I just think it is kind of weird not to. I think I'd want someone to introduce themselves to me if they were reading about my life :). Thanks for making me smile. I think that like Sarah, you are a great writer.
Blessings to you and your family,

Kristy said...


Thanks so much for introducing yourself.

I agree. The internet, and the concept of random strangers reading about your life, is very, very odd. Freaky is a good word. More than once I've stopped and thought, "Huh. Do I like this?"

But the blog has been such an outlet for me, and the strangers I've met (who have "revealed" themselves - hee), have been very kind, very encouraging, very NEAT people.

I agree with you wholeheartedly about Sarah. She is SUCH an amazing writer, and such an incredible person. The strength of her faith and the conviction behind her words as she shares her story is incredible. Amazing. Such a blessing and encouragement to others, as well as a very powerful testimony to God's love, mercy, and grace. She is witnessing to others every single time she sits down at the keyboard.

Having gone through the journey with your friend and with Sarah for the past year, I know you must be overwhelmed right now by the loss of such a sweet little girl. One thing that shocked me right away about Ellie was her love for life, even in the face of such immense suffering. In every picture, even when she isn't grinning full-force, her eyes are so bright and full of life!

I'm so thankful that she's with Jesus now. The fact that she is pain-free and dancing in Heaven must comfort her family a ton. But I also know they just ache here without her. I know they feel like they're walking through their day without a huge chunk of their heart. I'm praying for them often. It's odd not to really know them, when they come to mind now like family.

Okay. Phew. Novel over. Thanks again for saying hi. Come back anytime. I guarantee a few laughs from our sweet Sophs.

Blessings to you and your family as well.

Kristie said...

Kristy, we need a new post from you!!

Kristy said...


I have a friend visiting from CT (I haven't seen her in 5 1/2 years!) Too much going on to settle at the computer for longer than two seconds everyday. But I promise I'll be back soon!

Anonymous said...


Amazing and humbling! People like this put me to shame and put all my problems into perspective! I found another blog that I have been following and the lil guy died on Saturday (he was 4). His mother has to bury him tomorrow. I've been crying for days and I dont even know them! Here's what she wrote today.... so raw and so honest....

She crumbles on to the bathroom floor,an unbelievable pain in her chest... What just happened? She is bleeding . She places her shakey hands on her heart ,expecting to feel blood flowing through her fingers . She looked down at them , NOTHING...
The whole in her heart , the incredible pain, the deep sense of drifting away ,it was all about HIS death...
She is hurting beyond words...How can she explain? No one understands. Alone , on her bathroom floor, she is lost... Never will she hold him too tight again, never again will she kiss his mouth, never will she feel the weight of his little bald head on her chest and never will she have the taste of his tears on her lips...
"I want him back" She cries desperatly "I want him back,PLEASE GOD "
She gets up and get in the shower, lets the burning hot water run on her face.Maybe it will wash away the tears, maybe even it will take care of the cruel pain ...Maybe when she is done, things will be fixed and will be back to normal...
She gets dressed, looks at herself in the mirror and thinks "who is this person? " Dark circles, a few more rinkles, red ,swollen eyes... It didnt go away, this is our normal from now on, our normal life now is us without him...
Out the door, she hears the laughter of her boys. One is missing... But they are laughing still... If they can laugh, why couldnt she? If they can play and smile, she can still hug and love them, forever , because she is their mother , simply because they are part of her just as he was, just as he still is...
By the grace of God, She still smiles, by the grace of God, she will keep on.
The bathroom floor will still be her refuge, but as long as the laughter rings behind the door, she will always get back up...

For you who didnt meet Julian ,and those who wont be able to be there tonight and tomorrow with us ,here is a video ... A short version of the 30 minute original. Two songs that were meant for Ju...Thank you Macey for Yellow, and I cant recall who shared Godspeed with me...

and her lil guys' youtube video of his life...


if you are brave and have lots and lots of kleenex.... you can read this whole story at carepages.com

and then search on "juliansworld"

what an incredible family and little boy!

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