Sunday, May 19, 2019

Obit


Born to my consciousness around 1983, in a Victorian home in Washington, IL, George left this life April 17, 2019.

At that time he smelled of cigarettes, and Old Spice, and his mint gum. The gum, kept handily in the left front pocket of his shirt, had a squirt of mint liquid in the center. My annual 12 hour ride to his home consisted of hoping he wouldn’t make me wait too long before offering.

There are photos of us sleeping on the quintessential farmy couch - a 6 4 giant of a man - and me a baby.

He sometimes traveled with us, and always reminded me - a too skinny, funny-looking, lonely little girl - that I was HIS girl. He loaded my momma up with so much ice cream during her pregnancy that her doctor had to order her to stop. 

Long before being born to my consciousness, he was in the army, a master carpenter, a drunk, and abusive.

He had the kind of smarts that allowed him to graduate fourth in his army class of 64, without ever opening a book. He had no time for carpenters who cut corners. His work is his pride, and the pride of the family.

He once built a gazebo on a barge that was 18 inches off level. When the barge was dried out, that small house was true to plumb.

At the time of his birth into my consciousness, he lived gently, obscurely, and quietly. I took comfort in his large presence and knew nothing of the man before this one until my teenage years. 

He faded from view over the last ten years. No longer could sneak a drive and the cigarettes he’d “quit.” No longer could rise out of his chair to escape into the world outside. Always in the the room with the family, but largely in the background. Now, the fade has become death.

I want him memorialized as the man born to me, as the man born again, made new by the second generation - the first generation to meet him as he could have been.

Thursday, May 16, 2019

Influence



I’m aware this notion is informed by the privileges I experience. And, it changes me. Relinquishing the illusion of control wrecks me. When I face futility I lose hope. But, clinging to the illusion of control also wrecks me. It makes me a participant in futility. I scramble and rant and posture and exhaust myself.

I release that to melt into my influence - to breathe influence out into my sphere. Gentle. Non-demanding. Is what is what is. I can’t force change, but by the very nature of being in a circumstance it is changed. Circuitous knowledge.

Daughters will grow - wild, not controlled - influenced by my person and love. World will riot - my neighbor will know my compassion. Patients will die - grace will have walked with them. Mysteries will abound - my curiosity and perseverance will tease and untangle and sometimes fail.

I will fail. I will bully reality and humans grasping at control, or pouting over its elusiveness. And I will breathe in - I am not in control - breathe out - I am in influence - and lean again.

Parenting Survival in Special Needs


It turns out there isn’t definitive evidence having a child with special needs increases divorce rates. Some studies lean yes, some no. Coulda knocked me over with a feather.

Jason and I have it good. And we have it human. And we have it hard.  

We slip into not seeing each other. Parenting is a baton we throw in the other’s general direction as we gasp for space to stop feeling the weight of it all. 

Both of us scramble to make life work, and in the absence of a friend beside us, spin off into exhaustion and loneliness. 

I get busy in hardship. He retreats to a type of wishful thinking. Each pattern takes us farther from each other, though neither is useless for keeping the family moving and in hope.

My friendship with him is just as important to my identity and joy in life as our parenting. I don’t want to just be a functioning human in our responsibilities. I want to be HIS human.

If you’re partnered up in this parenting journey, particularly with a special needs child: good news - looks like you’re as likely as the next couple to make your partnership work. For us, it takes the humility to groan in need, and weep in grief, and listen openly, and express sorrow for inactions and actions that hurt. 

You’re not alone - in parenting, in losing track of your loved one. I hope you find them again and again.

#raredisease #chronicillness #tubie #specialneeds #parenting