"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."
(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:
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!
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 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.