Invis-Ability

My daughter Lulu doesn’t look like me. She doesn’t look like anyone. She doesn’t look like her differently organized genetics, or like a child who can’t eat and requires a feeding tube. 

But all the things she doesn’t look like are there, burrowed in her skin and bones and cells. My genetics and courage. Her dad’s genetics and silliness. The inability to eat. The extra hard work to learn to speak. The struggle to orient herself in loud, chaotic situations. The seizures. The indomitable resilience. 

Disability can dog the most typically presenting people. There are struggles – physical, emotional, mental – that don’t have the pitiful grace to hang on our outsides. They don’t make themselves known without observation and empathy. 

It’s a blessing and curse. People don’t place unfair limitations on the invisibly disabled. But, they also don’t provide understanding. 

Once, I wrote a piece about Lulu riding the short bus to special needs school. I included a photo of her marching toward her beloved bus. A woman angrily responded, “It’s a toddler getting on the bus for preschool. That’s the bus toddlers ride. Don’t act like you know when you don’t.” In dialoging, I learned about the profound disabilities her daughter lives with – back achingly heavy work, on a daily basis. 

Sometimes bodies hide difficulties and sometimes they show them. 

So, I think, the work of a just and loving society is to make space for all. To empathize with all. To give little buses and spectrum consideration and ramps and individualized education and inclusive places where the typical and atypical to meet on equalized, and mutually beneficial, terms. 

It’s a lonely sort of existence – locked away from play and education and work and communion because of your disability. And, it’s a lonely sort of existence when society misses the lessons and humanity shared when all members come to play. 

Whatever Lulu looks like, she will win and break your heart. She’ll inspire you. As long as I have breath, I’ll be expanding the spaces she, and you, can choose to bring beauty to.

Foster Love

Let me tell you what love looks like. Love looks like whole heartedly scooping someone into your world to offer them their first taste of safety - knowing that time, or needs, or choices will take them away from you - and your courage holds no part of you back.

Love does not cling. Does not give itself out of need for affirmation or congratulations.

Love leaves a hole when its object outgrows circumstances.

Today, in particular, love looks like parenting. And, in even more particular, it looks like foster parenting.

Love means arms will be lonely when children move to their next reality. Tears will fall over the smell of them in the house. Love cherishes what others see as too much work at too high risk.

Love is grieving deeply at my parents’ house. The foster kids they sheltered have moved into a long term placement. This grief is compounded by other griefs and losses.

I wish I could take the pain away. But to do that, I’d have to fundamentally change who my parents are - and the world, and my siblings, and the fostered littles, and all the people who’ve found shelter there would not have what we have.

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.

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

Precious Days

There are people who live in the halls of suffering. We frequent the collection points for the worst bits of what living the human experience can mean - sickness, disease, and death. These things used to be a normal part of life, but since they’ve been concentrated in hospitals and facilities, the human delusion of endless days faces less competition.

I don’t mind facing these things for you. But, with that burden I want to share what I’ve learned.

You don’t live forever. Your loves don’t either. Your days are precious. The skin of your person is precious. The bones of your children are precious. The magic of imagination and travel and laughter and self-indulgence and self-sacrificing is precious. 

We all instinctively know that things in limited supply are valuable. Treat your days and your people the same way. Get all messy living and loving and learning. Take risks. Apologize with your whole heart. Forgive with your whole heart. Take pride in your work. Just saturate in humility about your size in the universe. And LOVE. LOVE LOVE LOVE. With courage, pour your soul and best self into someone. When the fancy flights of feelings and romance wear off, grab their hand, feel their skin, listen to their heart, hear their breath, and revel in the marvel of them.

You, YOU, are precious. When the end of you comes, I hope all this loving surrounds you with people who know that. Who know you. Who stand over your suffering, and with strength fight for your dignity and memory and peace. 

Know that I will be there, no matter how this all worked out.

May grace cover every step of this tricky life we pass through. 

tiny hand

I’m so spent. I turned on the tv after work and pulled my girls onto my lap. It’s the height of what parenting I can give right now. Lulu’s little hand slid across me into Valentine’s. Valentine looked at me with a huge grin and big eyes - surprised with the trust of her little sister. We sat so for the longest measurable unit of toddler time - minutes.
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The chemistry of grief and love and hope washed through my brain. This brew is complicated and true.
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What parent hasn’t considered unfathomable loss, even if only for the briefest moments, this week. It feels so much better to give opinions, to engage the emotions of power than love in fear and empathy.
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My self defense mechanisms want to engage in politics and power and opinions and battles. Draw lines, wound those who disagree with my version of what’s best. It’s literally, chemically addictive.
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Let’s not. Let’s slide a hopeful hand to a comforting love, and spread comfort. What I mean is, I don’t want to live on the inside of my wounds and miss reaching out for comfort, casting out comfort, sitting in complexity, stumbling through complexity.
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I want to learn from my littles and my betters and my elders and my ghosts and ancestors. I want to mourn. I want to hope.