To Elli, from Your Daddy

This was written and shared by my husband at tonight's memorial service for our daughter Elli. As always, he wrote and spoke beautifully. Elli was so blessed to have such a man for her earthly father.



I miss you, Elli. The sound of your voice is still fresh in the house. I can almost still hear them. My head has whipped around more than once since Sunday when I thought I heard you. My grief runs deep. My big girl is gone to be with Jesus.

I’m writing this in the living room next to your empty wheelchair, with your name embroidered in purple (your favorite color) on the back rest and your pink flower backpack still draped over the handles.

Your chair is so sadly empty, yet so gloriously empty at the same time. The Apostle Paul said, I am “sorrowful, yet always rejoicing.” There’s no better way to express how I am feeling right now.

Next to sending His Son to die on the cross, choosing me to be your daddy was one of the most precious gifts God could have ever given me. I was 26 when I became your daddy, and my life would forever be changed.

I want to tell these people what this precious gift of being your daddy means to me.

Being your daddy meant understanding that parents are caretakers, not owners. That meant two things: 1) I would not have you forever, and 2) I would one day give an account of how well I took care of you.

Being your daddy meant opening your bedroom door in the morning and seeing your bright cheery smile. You were so much more of a morning person than I am. Your smile made my mornings much easier.

Being your daddy meant just hanging around the house with you, playing your favorite music, reading books, playing in the sprinkler, and taking walks down Willow Lane.

Being your daddy meant basking in your excitement when would we press play on that music CD you had chosen on your Dynavox. Your smile was because you knew the next 30 minutes will be filled with familiar melodies. You loved a familiar song.

Being your daddy meant laboring hard with Mommy and your teachers and therapists to try to understand what you wanted and needed and were feeling inside, because you couldn’t express these things with words. I would like to think that we scratched the surface of understanding these things. But I have a feeling that when I see you in heaven some day, you will be taking me aside to have a word with me and you will say something like, “Daddy. Seriously. I meant this, not this. You were way off!”

Being your daddy meant serenading you as I gave you a shower and cutting loose with songs I would probably never sing in public. You loved cheesy 80s songs by Chicago. You loved Karen Carpenter (wait, I did sing a Karen Carpenter song in public). You loved for daddy to spin you round and round after your shower, still wrapped up in your bath towel. It seemed like the highest point of your day, and I will never forget those belly laughs as we spun round and round with wet hair and the smell of soap in the air.

You couldn’t speak, but oh, you knew how to laugh.

Being your daddy meant seeing so clearly what matters most in life. You rescued daddy from putting too much stock in his career and the empty promises of earthly success to rush home and help mommy take care of you. You kept mommy and daddy loving Jesus and clinging to Jesus for our hope and our strength and our encouragement, more than anything else.

Being your daddy meant brushing your hair and brushing your teeth, dressing you and feeding you, lifting you up and setting you down, pushing you from place to place and experiencing the world with you from just above your head.

Being your daddy meant playing lots of word games with you. One of your favorite things to do was have fun with words, swapping out vowel sounds and adding extra syllables. Changing the lyrics to a song was the one sure way to get your funny bone. You were definitely born into the right house for that. I invented a new word this week in your honor. It’s the word “cryle” – which means crying with a smile. I’ve been doing a lot of that.

Being your daddy meant having a front row seat to watch God do very big things through very small things. You heart was the size of a walnut when they first operated on you at 3 weeks old. For more than 12 hours they worked to reconstruct your heart, and came out of the operating room smiling in disbelief. It was the first of many times you would overcome the odds. They had given you a 20% chance of surviving that day.

The ripple effect of that surgery sent shock waves of repentance and reconciliation through our family, our friends and countless strangers looking on. And the 3 surgeries after that had the same effect.

It is a gross understatement when I say that God did something very big with something very small. He took five loaves and two fishes and fed untold thousands.

Being your daddy was a precious gift that I will cherish forever.

In his biography on the legacy of Jonathan Edwards, John Piper writes these few words spoken by Edwards’ wife after his death, which echo my heart as I reflect on Elli’s life. Piper says:

“Upon hearing the news that Jonathan had died, his wife Sarah wrote in a letter to their daughter Lucy: ‘O what a legacy my husband, and your father, has left us! We are all given to God; and there I am, and love to be.’ His legacy is that when he left this earth, he left God with his family—and with us.”

Elli, when you left this earth, you left God with us. There we are, and there we love to be.

We will see you soon, princess.

Remembering My Elli-Girl

Tonight we celebrated Elli's life at a memorial service in her honor. We have been carried along by the love and prayers of so many friends, family members, and total strangers who have heard our daughter's story and been touched by her. I don't know for sure how many came, but our best guess is that between the visitation last night and the service tonight, we've hugged over 500 people. I was amazed by the number of people who traveled from out of town, and by the number of people who came who had met Elli once, or not at all. What a blessing and an encouragement to us.

I thought I would share here what I said tonight. My prayer was that both of us would be able to speak clearly and completely, and thanks be to God, He got us through. I decided to keep my memories light, as I knew if I started crying, I wouldn't be able to collect myself again.

Elli was always accompanied by stuff. She was severely limited by her body, needing total support just to sit upright. Equipment and medications and feeding supplies were an essential part of her gear every day.

As her mother, all of those things seemed to fade into shades of gray, while the little girl in the middle shone out in brilliant color. Tonight I’d like to introduce you to the rambunctious and irrepressible girl I knew.

The first several months of Elli’s life were really tough for her. She was living with a poorly functioning heart and couldn’t digest lactose. One of her vocal chords had been paralyzed by the breathing tube, so she had no voice. We used to say that her default mood was irritated and it took tremendous effort to make her happy. After her second heart surgery and new formula, she was finally able to get past the pain and let her personality emerge. We took great delight in those moments when she would reveal a little spark of the person hiding inside her uncooperative body.

The first time we ever heard her laugh, she was in a baby swing at our apartment. I was singing a Bible song with hand motions and trying to tickle her. She didn’t really know how to laugh – it just rolled out of her in this low chuckle that would turn out to be her trademark laugh.

I’ll never forget the morning I was getting her ready for school and preparing to take the younger kids to the zoo with some friends. I was very careful to avoid the use of the word “zoo” that morning, as I didn’t want Elli to feel like she was missing out on anything. I told the other kids to put shoes on and that we were going to put sunscreen on once Elli got on the bus. The next thing I knew, she had gone to her zoo page on her Dynavox and was talking about going to see the manatees (her favorite animal there).

She has been working hard to learn to drive a power wheelchair. Last summer she spent time every week practicing. One day when I picked her up, her therapist, Missy, told me that Elli had accidentally driven herself into the boys’ bathroom. Missy had backed her out, telling her that it was the boys’ bathroom and girls weren’t allowed. The next thing Missy knew, Elli had driven straight back into the boys’ room with a great big mischievous grin on her face!

Every time her brother and sister would start campaigning for me to take them to McDonalds, Elli would head straight to her McDonalds page and chime in with “McDonalds French fries” or “yogurt parfait.” Their teamwork was nearly irresistible.

Elli loved to mess with people, too. She learned to roll over at a pretty young age – probably around age 2. She would roll onto her belly constantly at home, then growse and complain about being stuck there until I or someone else would roll her back. Then she’d do it again. After 6 1/2 years of working at it and working it, she was almost able to do it. But… she never once rolled over for anyone at the hospital or in private therapy! She rolled over last year at school, but refused to roll this year, even after I blew her cover and told them she was pulling their leg.

She wasn’t above messing with me either. While she would walk across the gym and the resource room at school and down the hall for her physical therapist at Children’s, she refused to walk one foot in our home.

Elli was quick to size people up. Last year, in second grade, school got a little less fun for her – she was expected to actually listen in subjects like science and math and reading. She complained loudly, disrupting class, and earning herself a ride back to the resource room… which was exactly what she wanted. Fortunately, her aides realized pretty quickly that she was working the system to her advantage. They changed things around and Elli got much better about listening quietly. But still, as recently as last week, I got notes home from school saying she had needed three time outs and had lost her video privileges at lunch. Of course, last night I learned that the resource room staff were pretty much putty in her hands. She came in for time-out giggling, and got the whole room giggling with her. Her laugh and her impishness were infectious that way.

Elli also loved her family dearly. Her favorite people outside of our family were her grandparents, aunts, uncles, and her in-home helpers, Julie and Patrice. She nearly threw herself out of her chair every time we told her relatives were coming to visit or we were going to visit them. She loved bouncing around in the waves or the sprinkler on the beach buggy Grampa made, riding around the yard with Papaw on his 4-wheeler, having tea parties with Mamaw, and dipping strawberries in chocolate and making cookies with Gramma. She talked about those visits for months. She greeted Patrice and Julie with her beautiful smile every day when they arrived to help me with her.

All of this showed me that in so many ways, Elli’s mind worked just fine. And as patient as I tried to be with her, I know that she had to be 10 times more patient with me. We constantly underestimated her. My greatest desire for her was for her to learn to read and write so that she could finally say exactly what she wanted to say the way she wanted to say it. I know that one day, when I leave this life, we will finally be able to go for a walk and have a long long long talk. I look forward to that very very much.

Elli's Homegoing

It’s with a heavy heart that we are writing to tell you that Elli went home to be with the Lord this morning.

It is a great mercy of God that Elli went peacefully in her sleep, at home in her bed and her familiar surroundings. No life-support machines. No IVs. No pain or distress as far as we could tell. She was getting over a mild cold and had seemed to be doing better. There were no indications whatsoever that this was coming.

Yesterday, she was up early with her cough – about 6am. I got up with her and gave her a nice, warm shower because she had spit up a little bit in the night.

Later on Saturday morning, I stayed home with her while Scott took the other 3 kids to my parents’ house to get some firewood. While he was gone with the other kids, she and I hung out on the couch, watching videos and spending some good time together, since Elli was still getting over her cold and needed to rest. Elli took a nap in the middle of the morning, which was no surprise since she had been up so early.

Elli spent the day at home, listening to her favorite music, watching Veggie Tales and Wonder Pets DVDs and talking on her Dynavox. Yesterday evening, Scott and I worked together to make Elli’s favorite dinner – homemade pizza. We pureed a slice for her and spoon fed it to her - she ate really well.

We did our usual bedtime routine. We sat around Elli’s bed, as we always do, read a Dora book that Little Girl had picked out, and, as always, Scott embellished the words that were written in the book. Elli always knew when he embellished the words, and she would smile. On this particular night, we really wanted to see her smile since she hadn’t been smiling as much lately with her cold.

After the Dora book, we spent a few minutes working on our memory verse. It was Psalm 16:11 – “You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.”

Then we sang a song together that repeats these words 3 times:

Jesus is the Rock of my salvation
His banner over me is love

The kids really got into the motions, and Elli was happier than she had been all day as she watched them. It was obvious that her cold was much better.

Then we had prayer time. Older Boy prayed and thanked God that we had so much fun at Gramma and Grampa’s. Little Girl also thanked God for our time at Gramma and Grampa’s. Then Scott closed in prayer, asked for a good night’s sleep for everyone, and tucked everyone in their beds.

Scott's last words to Elli at bedtime have been a solemn time for quite a while now. About a year ago, he resolved to treat it like the last time he would ever look into her eyes. His routine is to hold both of her hands in mine, bend over very close to her face and whisper Numbers 6:24-26 in her ear:

The LORD bless you and keep you; the LORD make his face to shine upon you and be gracious to you; the LORD lift up his countenance upon you and give you peace.

She always looks into his eyes and smiles, her eyes sparkling. Then he kisses her on the forehead and strokes her hair, telling her "I love you, you are so precious," about two more times between turning out her light and closing the bedroom door.

We can’t tell you how thankful we are that last night was no exception to that routine. Thank you, Lord, for this last moment you gave Scott to usher Elli into eternity with a pronouncement of God’s blessing. We would not have wanted our earthly goodbye to be any other way.

I made 2 more visits to Elli’s room between 8:30 and 11pm to give her some cold medications through her feeding tube and check on her. On both occasions, she stirred when I entered the room, which was typical. I stroked her hair and kissed her goodnight as she drifted back to sleep. The last time we saw her alive was this visit from me at 11pm while she was sleeping comfortably.

I can’t help but think that Psalm 16:11 may have still been fresh in her memory as she stepped into “fullness of joy” in the presence of her God.

Elli was such a rare and precious gift to us, and to everyone who knew her. She endured the pain of several lifetimes in eight short years. From 3 days old, she was in an all-out fight for her life. We have seen her at death’s door many, many times. And we have seen her elated and brimming with life many, many more times.

Elli leaves a legacy of the glory of God in her wake. Few met her, probably, who did not stop to consider what mattered most. She was an ever-present reminder that “we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies (Romans 8:23).”

We are stunned at her sudden departure. I think we all expected a long, difficult battle in the hospital. While we miss her terribly and are still trying to wrap our heads around the fact that she is gone, we smile to think of her running, dancing, and singing, free of the broken body she lived in here. Our lives will be very different now, but we pray that we will never forget the lessons she taught us.

Elli was an ever-present reminder that we have an unwavering Lover of our souls. And He is a tender Rock, the rock of my salvation, whose banner over me is love.