October 2013 – The good days feel as though you are reliving the best day of your life all over again. And the gratitude is so strong and the love so deep, they dwarf the shadowy fear riding your back on the hard days. There is so much that is uncertain with epilepsy. I fumble each day trying to figure out this ride. Or, how to walk in it with grace and genuine acceptance.
You never know when seizures will hit, how bad they will be, or how long your little boy will be down for the count. It is our dear friends’ wedding day. Everyone in my family plays a role in the beautiful ceremony except for me. Two hours before the guests arrive to witness the sacred event, Eddie is clobbered with a seizure. Acquaintances watch as my son’s head lurches, his arms convulse and his neck stiffens. But that isn’t the scariest part. It is the look — the desperate, wild VACANCY in his eyes. And we watch as these electrical mis-firings in his brain steal my happy vivacious son away for the afternoon. He lingers in a partially catatonic state for 2 hours. His brain exhausted in every sense of the word.
He will never remember how I walked with him around the beautiful acreage of this quaint ranch in Tucson. He won’t know how the poor photographer couldn’t get MY joyous, smily son to just smile for the camera. Or how I crushed him to my chest, trying to coax his mind and body back into the land of the living. He won’t remember that I rocked him as he made whimpering noises, soft and so terrifyingly primal. Or how I quietly begged him to please wake up and give us a smile. I have rarely felt so helpless in my life as in these moments.
But suddenly, just minutes before the ceremony begins, Eddie wakes up! And he is ready to GO and he plows down the aisle when it is his turn, set on his mission to announce that the beautiful bride is coming. Hooray! And my relief is a cascade – We haven’t let our dear friends down on their special day.
Eddie sits in my lap as the ceremony continues. I look down at him and I see all the smiles I had begged for while he was gone beaming from his exuberant face. I think of Buddy the Elf and how he can’t stop smiling because smiling is his favorite! And all these goofy grins are meant only for me. He is happy to see me again. Like I am some long lost friend he hasn’t seen in years. It is a bittersweet feeling to have him looking at me like that, when I was here trying to bring him back all along. And he doesn’t remember. And somewhere in the ceremony, the singer begins a song I know well and have sung often:
There is nothing worth more / That will ever come close / Nothing can compare / You’re our Living Hope / Your Presence / I’ve tasted and seen / Of the sweetest of loves / Where my heart becomes free / And my shame is undone / Your presence Lord
As the music and the lyrics poured over me, my loving and happy son wouldn’t take his smile off me. I was encased in such innocent, devoted love rising up from him and flowing down from above. Scripture says in the Old Testament that God inhabits our praise and literally hovers over our corporate worship. That imagery has stuck with me. and I sensed it in this moment. I whispered the words and felt them in my bones. My “why’s?” were silenced while I sat overwhelmed in Living Hope. We haven’t been forgotten. It is probably the most tender moment of my entire motherhood, borne out of desperation. Long after the song ended, my sweet boy continued to smile into my face. As though he was telling me that he heard my pleas while he had been away. The ceremony ended, dinner plates filled, and dancing began. And with that, we lost him again. We made our way to the Emergency Room with too many violent seizures increasing in frequency that day. Our joy-filled moment had ended.
But now I see.
I must simply mother him the best I can. I will try not to complain or glorify the inevitable suffering this brings to him and to us. I am chosen to love him and speak on his behalf. To mother him in place of the woman who no longer can. I am going to keep trying as hard as I can. And love more than I really know how. I would never have chosen this and I still ache for it to just go away. Even so, I choose to live by Isaiah 58 and tattoo it to my body so I never forget my end of this covenant that took place in my heart at someone else’s wedding:
If you do away with the yoke of oppression, with the pointing finger and malicious talk, and if you spend yourselves in behalf of the hungry and satisfy the needs of the oppressed, then your light will rise in the darkness, and your night will become like the noonday. The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. V. 10-12
After some very dark and uncertain years, challenging my faith as I white-knuckled the promises of Isaiah 58…Eddie has been seizure free for over 2 years and he no longer has the epilepsy diagnosis. Miracles do happen.