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.

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