Leela's Eulogy

In my church four of the young mothers were expecting babies in the latter half of 2013. First Alice came on June 30th. Then little Leela was born on July 25th. Violet arrived next on November 20th and Josie on December 13th. Everyone anticipated the future friendships of the four baby girls. Praying and working, sharing and learning...

Leela was a little thing. She was so easy to hold because she was no bigger than a doll. Unlike other babies, though, Leela never seemed to make eye contact and she seemed to sleep and awful lot. When her eyes didn't seem to be getting better, her body didn't seem to be getting as strong as it should be, and she started having subtle episodes that her parents suspected may be seizures, her doctors suggested and MRI. February 7th was the day that shook our world for the first time... Leela didn't wake up from anesthesia for almost 24 hours after her MRI. We thought we might lose her then. After one long ambulance right and a week of the world's best doctors laboring to find answers, Leela was sent home with a diagnosis of Leigh's Syndrome. It turned out to be a rare genetic mutation in which over 70% of the mitochondria tested in Leela's body were faulty, depriving her of the energy she needed to grow and battle the innumerable ailments known to man. Very little is known about mitochondrial disease, and even less about Leigh's. We found out that in a few cases, children with this syndrome would live to be 8 years old or so, but it was likely that Leela wouldn't live beyond 3 years of age, with no known cure for the disease. For a second time our world was turned upside-down.

Grief, tears, pain... we were desperately grasping to understand the harsh facts. Leela's mom and dad had to face a reality that in the all-too-near future they'd be right here, right now, laying their baby down to rest one last time.

The likeliness of Leela living even as long as she did was probably slim, but I guess I took the possibility of three years with Leela for granted. After things finally settled into a routine we all put the thought of and end out of our minds, knowing we would be willing to go to the hospital as often as needed, pay any bills, and provide any support... We would do all this and in return we would have Leela.

We took every little hope to heart. Lately it seemed that leela was making improvements. Her last doctor's appointment was positive, she was more vocal, she was growing a lot... her red hair was getting so long, spiked up on her head all by itself with a mind of its own, as if revealing what her personality would have been. So when Jed and Kendra took Leela to the hospital on August 6th no one thought it would be Leela's last trip to the hospital.

Looking back now, it's crazy to think that it's been only 6 months since Leela's diagnosis. In spite of the immense sadness we find in her absence I find it hard not to be overwhelmed by the joy that surrounds Leela's life and time with us. We got to see her personality emerge. The MRI indecent in February took away her ability to cry but the medications and supplements Leela received brought back her eyes. They'd light up every time her brother and sister would laugh and play with her. They'd get so big and excited when her Uncle Isaac, who made a point of visiting with her every day, would talk to her and hold her. She liked music a lot, especially bluegrass and listening to everyone sing at Church. ...and the way she cooed with pleasure when her Mommy and Daddy would gently whisper to her.

I used to think that John 15:13 where it says, "Greater love hath no man than this, that a man lay down his life for his friends" it implied dying for someone, but in this past year I have seen my brother and sister-in-law lay down their plans, pleasures and normal routines for Leela. I saw this not only in Jed and Kendra, but the whole community. Friends, relatives, neighbors... strangers even, who selflessly gave of their hearts, time energy, and material resources.

There are many reasons for our grief. Maybe we cry because Leela will never experience those hallmark moments we expect in life: education, marriage, children, financial success, and so-on. ...and yet, Leela couldn't have lived a more full life. I think what we all strive to have in this life is quite simple: to love and to be loved. A lot can change in a year. A year can change you a lot, too. In her 378 days on this earth Leela was loved by all, touched every one of us with each precious day and will continue to affect us greatly throughout our lives.

We gave Leela our love, our time and our kisses and in return she gave us the most precious gift... her smiling eyes and her beautiful life. We thank Him for the opportunity He gave us all to learn selfless love... giving without any expectation of return, and caring daily when we knew the end would come too soon. We thank God for our year with Leela.
 

Written and Presented by Mary Ellen R., Leela's Aunt, on 8.16.14