Thursday, April 18, 2013

Eli's First Birthday Invitation

It's been an emotional day for me, and it's only 10:00 a.m. We were getting Elijah ready to meet the bus to school, which means grabbing his bottles of formula from the fridge and zipping them up in his backpack. Nurse Melody was at her own home last night, so this was the first time anyone looked in the backpack since yesterday. The first thing I noticed was an envelope on top of the backpack contents. "What is this?" I said, although I suspected right away, and my existence shifted a bit, everything everywhere all at once, the way the world is lit differently during a solar eclipse when the moon bends all the light, and it's orange and lovely and glowing but still essentially the same light.

Melissa was standing beside me as I opened the envelope and saw a card with Optimus Prime from the Transformers, and the words "You're Invited" underneath. My hand trembled, and I looked at Melissa. Tears jumped to my eyes, then more, and suddenly I was sobbing beyond my control. Sophia ran over to ask Melissa what the card said, and I stumbled into the dining room and wept. After Melissa shared the card with Sophia, she joined me in the dining room and embraced me. I got hold of myself and gave her a kiss, then Melissa left me there to go share the invitation with Eli. He didn't know about it, so it was a wonderful surprise for him.

Sometimes when I'm lying in bed, I allow every inch of my body to feel the covers above and below me, to open my sensation of touch to expand to its full capacity. I experience the strange paradox of feeling both compressed, smaller from head to toe, but also expanded, able to sense more of what's around me than what my body is actually feeling. This is a sensation with which I'm well aware from my time with Elijah. So very often, day to day, you and I allow some of our senses to shut down while one of them -- sight, mostly -- takes command of our attention and beams only the current circumstance into our heads. Often this is a good thing, like when we swerve around a fallen branch when driving; you don't want to be distracted from that single object. But when you can afford to open yourself up to the entirety of your life's story, or to your son's, it's a humbling and overwhelming thing. It buckles your knees, drops your jaw, fills your lungs. It's in these moments when I most fully experience the supernatural, what I believe is the presence of my Creator, although I always pragmatically believe even when life is more mundane.

Put yourself in my shoes. One moment, I was running around trying to fulfill Eli's routine, as well as Sophia's and my own. The next moment, the very next one, I'm remembering the time when Eli was born and I wondered if anyone would ever play with him, or appreciate him, or love him like I did. I wondered if he'd speak sentences, or taste food, or listen to music. I worried that he'd been in constant pain, or sit quietly and watch the world leave him behind, struggling with loneliness and anger and confusion. I braced myself for the possibility that he would never forgive me for making him be born sick, and that I would never forgive God for the same thing. (We recently learned that doctors in Europe will be featuring Elijah's case in a textbook, because he suffers from a rare version of one of the world's most rare diseases. It's one thing to suspect, and quite another to see it in print.)

To feel all that massive, heavy past superimpose upon the present day, where Elijah is RUNNING down the halls of his school, learning to add and subtract, singing the songs from Wreck-It Ralph, cracking jokes, and begging for one more minute of toy time before getting into bed... It's a compacting feeling, almost crushing. Even opening yourself up to all the good things in life is a spiritually draining task, and it's even more impressive when you never saw it coming. There I was, just pretending like it was completely normal for Elijah to see 20/40 with glassess and use his hearing aid to hear all the way across the house, to ride a big yellow school bus all alone and never feel scared in the least, to never get angry, to never display jealousy, to always say "thank you" for even the smallest of gifts. To say "thank you" when the nurse has just pulled out the needle, and he's terrified and unsure how must longer this will take. To have a spirit like that, to be a person like that.

Elijah received an invitation to a birthday party last year, from a little girl in his class that thinks he's fantastic. We met her because her sister is Sophia's friend, and I know the parents very well. But now, Eli has gotten a birthday invitation from a kid I've never met. His parents don't know me, either. The only connection is the one that Eli built from scratch at his new school. He walked into the classroom, participated in the learning and the fun, spoke when he was spoken to, and showed his peers how much he appreciated them. And when it was over, one of his friends asked him to come take part in a special day where Eli's friendship would be rewarded with food, games, prizes, and apparently a few laps around a go-cart track. Don't forget, Elijah has only recently been given the height he needs to ride go-carts, thanks to new prosthetics from Sabolich in OKC. Nothing, nothing, nothing, nothing, nothing in Eli's life can be taken for granted... but we still do it, all the time.

I envy the moms and dads of children with special situations, who never doubt that their kids will achieve just as much as anybody else in life, and when these triumphs occur, the parents cock their heads and say, "Well, what did you expect?" Then they go on with the routine of helping the kid rise above any and all limitations. I envy them, but I could never be like that. My doubts and fears are something I've had to overcome, and they drive me to worry about Eli, to investigate all the resources and possibilities, to navigate around the pitfalls even when they aren't that close. (You can be sure I'd never have made it this far without the organizational genius of my wife, Melissa, and the calming stability of my daughter, Sophia.) And I admit, even after all the success, even after all the hard work Elijah has performed on his own behalf to achieve what he must somehow have known he would one day achieve, I still had doubts. Even though I know everyone loves my boy, I wondered how long we'd wait for the first party invitation.

The answer was: kindergarden. Not too shabby.