The following was written by Scott, my husband and Elli’s father. On the first anniversary of Elli’s homecoming, Scott put his thoughts down in writing. He gave me permission to share it here.
October 19, 2009
One year ago today, our 8-year-old daughter, Elli went home to be with the Lord.
In His great mercy, God chose to gently and quietly call her home in her sleep, with no apparent distress or suffering. Elli had life-threatening congenital heart defects that left her fighting for her life from the day she was born. A lack of oxygen and critical illness shortly after her birth left her with severe cerebral palsy and many other physical challenges. She never ceased to amaze the many doctors and nurses who cared for her throughout her life. Despite dire predictions, she clawed her way back from death’s door countless times.
Despite her many physical challenges, Elli’s mental faculties were intact. She was a bright girl who had amazing abilities, even though she could not walk, talk or do anything for herself. We count it a blessing that God chose us to be Elli’s parents.
So many of the little details of the day she died are hard-wired into my brain, never to disappear. I had taken a shower the night before (which was a Saturday). So when I got up at 7am on Sunday, October 19, I staggered into the bathroom, wet my hair under the sink and got dressed for church like every Lord’s Day morning.
I was the first one up. Luke (who was 15 months old at the time) was starting to cry. So I went into his room (he shares a room with Sam and Anna) to get him and wake up Sam and Anna for church.
One day the week before, Joy had found some new dresses in the basement that were Anna’s size, that she forgot she had. I knew those new dresses were hanging in her closet, which was in Elli’s room. So in an effort to motivate Anna to get up and out of bed, I said to her, “Do you want to go pick out one of your new dresses?” She is always motivated by clothes, especially new ones, and especially dresses. She said, “Yes,” and jumped right out of bed.
Elli had her own room, but she shared her closet with Anna. So we tiptoed into Elli’s room very quietly to find Anna a dress for church. Elli had not made a peep, but she had been known to sleep in until 7:30, or just lay quietly in her bed.
It was still somewhat early (about 7:15am), so it was quite dark in Elli’s room. I quietly opened her bedroom door, walked straight over to the closet and turned on the closet light, now with my back to Elli.
As I started looking for a dress for Anna, I had a chilling thought: Elli had not moved a muscle when I opened the bedroom door. Nor did she stir when I turned on the closet light. She would have stirred by now. She should have stirred by now.
I slowly turned my head around while standing at the closet door and looked at Elli in the beam of the closet light. She was still, very still. Very peaceful. Her eyes weren’t open, but they weren’t exactly closed either. I had never seen her like this.
I turned around, staying put but studying her chest closely in the faint closet light to look for movement. None. Then I walked over to the bed, still just studying her chest for movement. None. I placed the palm of my hand on her chest. I felt nothing, but she did feel slightly warm. Surely this is just me. I felt her wrists and her neck. Nothing. Nothing. This is crazy.
Joy was in the other kids’ room, getting the boys moving. I called out, “Joy?!” “Yeah?” she answered. “Elli is very still,” I said. I had a terrible nervous, half-crying tremble in my voice that I’m sure must have scared Joy half to death.
At that moment, I didn’t consciously believe Elli was gone. I thought maybe it was just my inability to feel anything. Her skin was fairly warm. Her bangs even had some warm perspiration in them. Elli was always a sweaty sleeper, as most cardiac kids are. We never covered her up, and kept a ceiling fan on her, and she would still sweat at night.
Joy ran into the room and checked the same things I did. She ran out of the room, got the phone and called 9-1-1. I don’t remember exactly what she said to the operator, but I do remember that her voice was frantic, breaking up and barely understandable.
She ran back in the room. I was not very helpful for the next few moments, but I did make sure the kids were all in the other bedroom, with the door closed. Joy was on the phone, standing over Elli and doing what the operator asked her to do. Then, at the operator’s request, Joy picked Elli up and put her on the floor. I helped remove Elli’s leg splints, which she wore every night to keep her legs stretched out.
With Joy on the phone with the 9-1-1 operator, we followed her instructions. Joy would do 15 chest compressions, and I would give 2 breaths, with my mouth over Elli’s nose and mouth. I had never done CPR, and had not had training in it since I was in Jr. High.
The CPR seemed to be doing nothing. Joy repeated back to the operator, “They’re almost here?!” Then she turned to me and said in a trembling, shaking, half-crying voice, “Go unlock the front door.” Amazing. Less than 10 minutes had passed. I not only unlocked the front door. I threw it open and felt the October chill and heard sirens way off in the distance, approaching very quickly through our neighborhood. They were coming here.
I rushed back to the bedroom. Seconds later, about five men came lumbering down the hall with huge duffle bags thrown over both shoulders. They had tons of gear. The house seemed to be completely overtaken by them. We stepped aside and let the men work. Elli’s room is small, and I found myself trapped in the room with all the guys in there.
So I stood and watched them calmly and diligently work. The men seemed to all be very tall, husky men. But one man with a blonde buzz cut who was very young, small and lean knelt down over Elli and began doing chest compressions. He never stopped doing them from that point forward.
After only a few minutes, they placed a board under Elli and whisked her out of the house swiftly into the chilly October morning air, and into the ambulance. They never stopped doing CPR. Joy got dressed quickly, and we decided that she would go and I would stay back with the kids since there was no one to watch them. Both of us had red, puffy eyes and our voices were broken and trembling with sobs at every syllable.
As I followed the paramedics down the hall and walked past the hallway bathroom, I remember catching a glimpse of my face in the bathroom mirror. My pupils were completely dilated, black with fright. It was an image I hope to never see again.
As they loaded her in the ambulance, I closed the front door of the house, collapsed on the couch, and cried like I have never cried in my life. At that point I was pretty sure she was gone, but I wasn’t totally sure. Regardless, this would change our lives dramatically. If she did make it back, she would be far worse off because of the length of time she went without oxygen. If she was gone, she would not come home and we would have a long road ahead.
I walked back down the hall and walked into the closed bedroom where the other 3 kids were playing quietly, unaware that the paramedics had been there. I sat down in the middle of the floor. They couldn’t take their eyes off me because my face was so messed up from crying.
“Guys,” I said, “Daddy found Elli this morning and she was very, very sick. We called the ambulance and they came and took her to the hospital. She was very, very sick and you need to know that she may not be coming back.”
I started to bawl again. My crying must have sounded a lot like a laugh, because Anna started laughing at me. She thought I was laughing. I didn’t resent her laughing, because she was too young to know. I asked the kids to pray with me, and we prayed for Elli. I don’t remember exactly what I prayed, but I think I prayed that she would come back.
My pastor showed up shortly after that. He prayed with me and the kids, this time in the living room. The police officer came back in and said the hospital wanted me to come to the ER now.
I jumped in my car and drove to the Liberty Children’s ER. I walked in and not a soul was in the waiting room except for the receptionist and a security guard. The receptionist got a really nervous look on her face when I walked in. “Are you dad?” she asked. “Yes,” I said. She called back and said the charge nurse would be right out.
It seemed like forever, but it was only a couple of minutes until the charge nurse came out to get me. I followed her back through the double doors, and as soon as I entered the hallway, I saw a nurse wheeling a bed down the hall with Elli on it. It was horrifying. She was draped in a blanket up to her neck, so I could see her face. She looked like she was sleeping. It was very strange. Every other time I had seen her being wheeled down a hall on a hospital bed, she had a million lines, cords and IVs hooked up to her. There was none of that. Just a bed, a sheet, and Elli, looking peacefully asleep. It was not until that moment that I was sure we had lost her.
They wheeled her into a triage room and pulled the curtain behind us, so we could be in a private room with her body. One of the nurses stayed in the room at all times and said she was not allowed to leave us alone with her, but that we were free to stay there with her as long as we wanted.
The ER was so quiet. It was as if we were the only people in the whole hospital, which made it so surreal. Normally, the ER feels so busy that you feel like you’ve been forgotten. This time, it felt so quiet that we felt like we were the center of attention. It seemed like lots of people were shuffling in and out while we sat next to Elli and wept and prayed.
They gave us tissues, but I just kept wiping my tears with the sheet that was draped over Elli. A thousand thoughts raced through my mind as I sat right next to her body. I remember looking down at my watch and looking at the date. October 19. I thought: that is a date I will never forget.
Elli’s time with the Lord in heaven has reached its first year. I can only imagine the radiance that must be shining from her face since the moment she slipped into eternity that morning. Even though she could never talk, Elli loved life. And I believe that Heaven is life’s truest and highest of all realities. I am glad that Elli is awake now, in her truer, higher reality.
Those are the kinds of thoughts we have become very fond of: Elli in glory, with her Heavenly Father — Who loves her and cares for her infinitely more than her earthly mother and father ever did, or ever could. She is finally free of the many limitations she had while here on earth. She can finally walk and talk and run and skip and play and sing.
I’m sure that for Elli, one year has seemed like a moment. But every day for us has been somewhat of its own eternity. The weight of her loss has pressed hard on us. But in our sorrow, we still rejoice for her sake. We feel particularly close to eternity these days. Our own inner longings for heaven run deeper than they did before. As Charles Spurgeon once said, experiencing the pain of a loved one’s death has helped us know better how to live.
I could tell stories all day about how our lives have dramatically changed since losing Elli. We did not simply go from a family of six to a family of five. We went from being a special needs family to a “typical” family. This has been a major adjustment for us.
Besides the many day-to-day adjustments, I had not anticipated how difficult it would be for our family to adjust to social situations. Before Elli died, we were always talking to strangers when we were out in public with her. Something about her presence made us appear more “approachable” as a family. That’s the best way I can describe it. Maybe it was pity we were getting from people, or sympathy. But it was a much more interactive existence that I miss very, very much.
Now, when we walk into a public place, no one looks up. No one stops to stare, or to smile and strike up a conversation with Elli, or with us, as they often did. The convoys of equipment no longer accompany us everywhere we go. Packing for trips to the store, or to the beach, are staggeringly simple.
When Elli was with us, everything we did had to take her disability into account. You learn what places have stairs, and you avoid those places. And you also learn what places have thought of everything when it comes to accommodating someone like Elli. Those were places we liked to go. Vacations were tricky, because you had to ask a lot of questions. Often, the person making the reservation had never considered whether the destination was wheelchair accessible or not.
One of our first family activities after Elli’s funeral was a long hike through the craggy cliffs and narrow passes at a nearby state park. We wanted to do something that Elli would have absolutely loved to do, but could never do. It was a bittersweet experience that was symbolic of her new-found freedom to roam about in glory, unimpeded by her broken body. We wanted to experience a little glimpse of it here, without her.
Through this life-long trial that will never completely go away, God’s presence has become more of a place of comfort than it ever was. The promises found in Psalm 16:11 are true: “You make known to me the path of life. In your presence there is fullness of joy. At your right hand are pleasures forevermore.”
One year ago today, a lot changed. But not everything did. In many ways, we do feel like we lost everything when we lost our precious Elli. But through losing her, we have come to know more of Christ and His eternal promises. His promises are unchanging and they will never be revoked. Here are only ten, out of dozens in the scriptures, that have brought the greatest comfort to me personally:
1. All things work together for good for those who love God. (Romans 8:28)
2. God will never leave you or forsake you. (Deuteronomy 31:8)
3. The sufferings of this life are not worthy of comparison to the splendor of heaven. (Romans 8:18)
4. God never gives you a trial you cannot bear, but always gives us what we need to endure it by responding in believing obedience. (1 Corinthians 10:13)
5. The “God of all comfort” will comfort you so you can comfort others down the road. (2 Corinthians 1:3-4)
6. If you bring your anxiety to God, His peace will still your heart and mind. (Philippians 4:6-7)
7. Having God’s salvation in a time of profound loss is better than not having God’s salvation in a time of happiness. (Habakkuk 3:17-19)
8. The testing of your faith produces patience and perseverance to the end. (James 1:2-4)
9. If you are a Christian, it is a foregone conclusion that you will suffer with Christ in order that you may be glorified with Him. (Romans 8:17)
10. Jesus understands your sorrows and sympathizes with your weaknesses. He was called the “man of sorrows” and was acquainted with grief. He freely gives grace and mercy to help you in your time of need. (Isaiah 53:3, Hebrews 4:15-16)
Through the ups and the downs, the terrifying moments and the serene, the frustrations and the laughs, Elli was an ever-present reminder that God makes no mistakes, and His promises are true. He orchestrates all things for His greater plan and purpose, even the things that don’t make sense to us in the here and now.
How can I say that? Elli’s little life changed so many lives permanently. Her radiant smile shining right through her challenges has been one of the greatest blessings to so many people. You may ask: “Why does God allow suffering in the world?” To have people in the world with Elli’s joy, shining through such profound limitations, can glorify God more than almost anything in the world, apart from God’s own gracious, spiritual presence with us.
In case you are interested in reading it, Joy has posted the eulogy I wrote and recited at Elli’s memorial service a couple of days after she died. Reading it brings back so many memories of that day. Hopefully it will give you more of a sense of the closeness and the sweetness of our relationship.