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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.

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