My granddad was a beautiful soul. He was a carpenter who was still working well into his seventies, bending at his waist, spitting roofing nails he carried clenched in his lips and hammering them with one blow in rhythmic excellence. Granddad would mesmerize us kids with stories of his childhood and the Depression, with his uncanny ability to summon a dog with just a stare and with his wisdom as the family genealogist/ geneticist.
See, according to Granddad, there would never be a son born to the daughter of a Bateman. He based this logic on generations of proof. He was the son of a Bateman son and therefore could produce both male and female children but his aunts only had girls and their girls had girls and so on and so on. His sisters only bore female children and his daughters only bore female children. My mother was his youngest child and had three girls. Yep, I’m a middle child.
So you see, I grew up knowing I was going to have a girl. Her name would be Holly Nicole, and I would dress her in pink lace, and she would never get dirty, have a temper tantrum or break my heart. Back in the olden days (the ’70s & ’80s) girls kept a hope chest that over time they filled with items that would be important in their future when they met the perfect man who would sweep them off their feet and, after a glorious honeymoon, build them a house with a white picket fence to raise their angelic daughters in. Yep, I’m one of those girls.
But I was all about the baby. My hope chest had two champagne flutes meant for that glorious honeymoon night and everything else was for Holly Nicole. She had a teddy bear that had her name printed on the satin ribbon around its neck, little pink lacy dresses and the cutest little hair barrettes personalized with her name. Yep, my daughter would be born with gorgeous ringlets of chestnut hair.
Reality Check: I found out I was pregnant two days after I had finally worked up the courage to leave my husband and put an end to a bad marriage. I was sleeping on the floor of my old bedroom in my parents’ house they’d mistakenly thought they could turn into a music room three years after I’d moved out.
Before I knew it, a doctor is passing me a completely bald newborn with what seemed like the biggest nose I’d ever seen. The words, “Congratulations, it’s a boy” were echoing off the avocado green tile walls of the operating room. Yep, that’s how they did it in the olden days — no fancy birthing rooms back then.
I named him William Casey — “Casey” because the doctor who delivered him was kind enough to offer his name when I told him through tears I was suppose to have a girl and had not chosen a boy’s name, and “William” because that was Granddad’s name. Yep, the one who swore there would never be a boy born to a girl. He passed away 11 months before Casey was born, but I knew he was there; I felt him, and he was happy.
Casey was my parents’ first grandchild, so they were actually happy their newly single daughter was back home. He screamed and cried a lot and slept very little, but he grew quickly into that nose and had the most beautiful golden eyes trimmed in the longest eyelashes I’d ever seen! He didn’t sit when he was supposed to or crawl when he was suppose to but, coming from a long line of girls born to girls, we attributed this to boys developing slower.
He had these moments where he seemed to get lost in the music of a commercial on TV or in the sound of your voice. He would just cock his head to one side slightly and his lips formed a little half smile, and you just knew he was listening to something so intently that he couldn’t be bothered with you, and in that moment you could see the wheels spinning inside, and you knew it was just a matter of time, and he would let us in on his secret world.
Then it happened. He had a seizure. That seizure led to more seizures, which led to bigger seizures, thousands of tests, medications, communication boards, therapies, strollers, wheelchairs, TRAFO braces with twister cables, seizure helmets, specialists, hospitals, emergency rooms and diagnosis after diagnosis after diagnosis; seizure disorder, deficits in vestibular and bilateral integration, postictal (after seizure) Todd’s paralysis, metabolic disorder of unknown origin, heterotropic grey matter, migrational brain defect, microcephaly, moderate mental retardation (later changed to autism), obsessive disorder, epilepsy, severe epilepsy and finally, Lennox-Gastaut syndrome (one of the most severe forms of epilepsy).
From the age of 2, he started having meltdowns (though we didn’t know what they were back then) where he would bite his wrist or bang his head until he bled. He didn’t seem to feel pain in certain areas of his body but in other areas he couldn’t stand to be touched. He screamed when you bathed him as if you were dipping him in boiling water, and things that would console other babies, like riding in a car, brought on screams of terror.
The bigger he got the worse the meltdowns got. I once stood crying hysterically in Wal-Mart over an upturned adult-sized stroller in which he was, thankfully, securely strapped. Onlookers giving me — and him — a wide birth as they contemplated the likelihood I was going to make a break for it. Yep, this is the event that comes to mind every time someone tells me how incredibly strong and inspirational I am and I smile thinking, “Obviously you were not in Claremore, Oklahoma, shopping in the Wal-Mart on June 8th 1993.”
Thankfully the meltdowns eased considerably after he made it through puberty. Now he only occasionally bangs his wrist into his teeth or his forehead. He is now joyously happy most of the time. He loves music and musical instruments, trains, planes and helicopters. He has an insatiable appetite to shop; vacation isn’t vacation unless there is a gift shop involved. He constantly asks to go “someplace special” which can mean to Cars Land in California, to Branson, Missouri, to see Shoji Tabuchi play some awesome fiddle music or to a nearby restaurant for lunch.
I started my Facebook page because, to me, Casey is the inspirational one, the strong one, and I love to share his journey with others. I’ve seen the effect he has on everyone he meets, and I thought my years of experience would be useful to someone new to the path of autism and epilepsy.
But instead I found a community who had so much to teach me. You young newbies have me burning up the Google search box on a daily basis! I often feel like I did when Casey’s little sister became a teenager and started the text talk — you guys have an abbreviation for everything. I’m in awe of the strength and courage you guys demonstrate as you advocate for your children, and I’m incredibly thankful for the many friendships I’ve found in the autism/epilepsy awareness community.
It wasn’t that long ago that I realized that due to Casey’s constant seizures I had become virtually homebound. I drove to a nearby town and an entire block had been demolished and rebuilt in the time since I’d been through. And now look at me; I have friends in Holland and the U.K., Australia and from all over the U.S. I purchased a wheelchair van and got us mobile again, but it’s through this community of support that I’ve found a life beyond these walls and I love it.
This post originally appeared on Conversations With Casey.