A few years ago, a good friend, Lori Hiscock, shared Eli’s story on the GCC blog. We are so grateful to Lori for giving Eli’s perspective a narrative since he is a man of little words. I saved her email from August 6, 2014, with the story – and I’m so glad I did since I can’t find it anywhere else. Here is Eli’s story, in Lori’s words:
My Amazing Life
Have you ever sat on a fast moving boat? Have you felt the wind tossing your hair back and forth, tickling your eyelashes, making your nose tingle?
Or have you sat by a window when rain was rolling in? Did you smell the change in the air? See the softening of the world outside? Did you hear the swelling, compelling music of the drops? Drip…….drip….dripdripdripdripdripdrip and did your spirit dance along?
Or have you floated in a lake? Have you felt the soft force of the water pushing back against you as you lay there, buoyant and still for just a moment before you couldn’t hold it in anymore and you had to wiggle and wrestle with that silly water while you laughed and laughed and laughed?
Have you seen – have you really SEEN – this unbelievable world that God has made for us?
I have. My name is Eli Aquila, I’m one year old, and my life is amazing.
Some might say my life wasn’t always amazing. I was born January 13, 2013 in Louisiana, four weeks premature and very, very small. My birth mom used drugs which made me pretty sick for a while. Even then, though, with all the chills and fevers, convulsions and pain, God was still working on His bigger, better plan for me. Four states away, he heard my momma and daddy praying for a child. Praying for THE child – the one God meant for them.
God decided that this child was me so, after seven weeks in the hospital, this loving, Christ-following couple bundled me up and took me back to Granger Indiana with them as their son. See? Amazing.
I know they had dreams for my life. They dreamed of sports and dances, graduations and grandkids. As my first year went along, I saw their dreams changing. I wouldn’t eat and I wasn’t gaining weight. Their prayers shifted from long term dreams to short term battles. God, help Eli grow. God, make him strong like David. God, help us not be afraid.
While I know momma and daddy were worried, I was enjoying the warm sun and our dog and that amazing moment of the day when daddy came home from work. Even when they took me to Riley Children’s Hospital and pricked me with a million needles, the memory of the pain was gone the second momma picked me up. No temporary hurt was as awesome as patting her cheeks while planting kisses all over her face.
When the doctors finally sent us home, I wasn’t worried. I truthfully forgot about it all, like I forget most things once the moment is passed. I don’t store pains or hurts, worries or losses. I store wonder though. And people. I really love my people.
I guess this part of my nature is because of what the tests showed. One of my chromosomes is different than most peoples. They call it Angelman Syndrome, which is a neuro-genetic disorder that only one in 25,000 kids have. It’s so rare that it’s hard for the doctors to know what it will look like with me. Some kids have balance problems and physical delays. Some have seizures, developmental delays and a lack of speech development.
So far for me, I don’t feel hunger so I have no interest in eating. This is why I wasn’t gaining weight, so the doctors put a G-Tube button in my belly so that momma and daddy could feed me directly. Now that I’m not fighting feedings, I’m actually growing! That’s making mommy and daddy breathe more deeply and smile a lot more.
For me though, I’ve always smiled a lot. They say that this is part of the Angelman Syndrome too. Children with this condition are best known for being ‘excessively happy’.
Excessively happy? What is that? Truly, I don’t think that people are seeing some genetically induced happiness when they see me. I think that they are just seeing a child in the moment, experiencing all of the awe and wonder at our world that adults often miss. Even children can be distracted from the magic in God’s creation, either by pain, hunger or feelings of fear or loss. I don’t experience the interference of those though, so I get to just marvel in the gifts that surround us.
Momma and daddy still pray over me all the time. They pray that I won’t have seizures. They pray that I’ll continue to be strong, like David. They pray that they can let their dreams of what my life could have been go and step into our reality. That they can step away from loss and mourning and take their next step towards God’s bigger, better plan.
They also thank God for the way they are seeing the world differently now. They thank Him for the unbelievable beauty in the moments, the beauty that they rushed by before but now see more clearly as they look at their surroundings through my eyes. As they thank God, I smile, lift my arms and thank God with them. How could I not? My life is amazing.