That being said, I am a mama before all else and my primary job is to protect my children. I try to form words that both help foster understanding and also maintain Alyosha's privacy. I don't always hit the sweet spot, but that's what I shoot for. Recently I went back through the archives and deleted a few posts that I wrote last year, things I needed to say to make sense of my own pain but probably best not left up for the big wide internet to read for all time. It's a constant discernment process.
Last week I wrote a post here that was caught by a special needs parenting page on Facebook and that circulated quickly. I think I may have literally felt my heart getting warmer as I saw my feeble words connect to parents in situations just like mine, but at the same time nothing like mine. This wasn't an adoption group, it was a smorgasbord of parents of every diagnosis (or lack thereof) under the sun. And I was overcome with gratitude and pride to be counted among them.
Mary Oliver said, "There are things we can't reach. But we can reach out to them, and all day long."
I hope the following words can help you reach out to the suffering of your neighbors.
I am a mother of a child with special needs that are not obvious to you.
She's not in a wheel chair, nor does her body show any physical signs that you would recognize.
She can walk and talk, laugh and cry. She looks very "normal" to you.
But my child's needs dominate our life. We have invested all of our money into treatments, therapies, and diagnoses. We have taken on learning special needs parenting as an additional full time job, because traditional parenting practices don't work in our world. We have forfeited the family vacations, social engagements, and community involvement that we always dreamed of because they simply have disastrous effects on our precarious rhythm.
Our life is beautiful, but it's incredibly hard. I don't have much time for self care when I'm just trying to keep the world on it's axis: I look older than I am and chubbier than I should. My love for her is what spurs me on, and I keep my sanity by taking it one day at a time.
Today we need groceries.
We enter the doors of Wal Mart and slowly the store closes in on her. The lights are too bright, the people are too loud, she can't fix her eyes on anything because everywhere she turns there is something new to account for. She panics, throws herself on the floor, and wails.
You walk down the aisle looking for Raisin Bran. You take one look at her, flailing on the ground, and at me, crouching beside her. You roll your eyes and mutter under your breath, loud enough to ensure being heard by the woman in the red coat who just wants her oatmeal. You walk away, feeling smug that your own children knew they could never pull that crap.
You walk away in a huff and I don't love my daughter any less. I haven't lost an ounce of compassion for her. But you have chipped away one more piece of my hope for connection with the outside world. You have built up one more wall between my already isolated heart and it's longing for community. You've ripped a hole in the fabric of our humanity, so I hope that's some damn good Raisin Bran.
I am a mother of a child with special needs that are not obvious to you, and I caused them.
For much of my life I was sexually abused by a relative. When I finally ended up pregnant, everyone called me a slut. I was still just a kid: I was so scared, so ashamed. I had no one to trust and no one to talk to. I drank away the pain as often as I could for 9 months.
My son is four years old now and I'm still young, but I've grown up fast. I didn't know how to be a mom those first few years, and I made a lot of mistakes that I regret. But now I'm taking parenting classes and getting counseling for myself. I have a full time job; I work hard. I love my son like a mama lion. I love my son the way that you love yours.
But my baby, he had a rough start. He had the deck stacked against him and I would give my very life to go back and change that, but I can't. We move forward, together. I will give him a better life and I will give him a chance but I can never give him a brain that was perfectly formed in utero.
Today he has a cough so I will give him medicine.
We walk into Wal Mart at the end of a long day of work and day care. We are congested, he hasn't been sleeping well, and we are hungry for dinner. I know this errand is asking a lot of him, but what choice do I have? I watch the father picking up diapers on his way home from work. What I wouldn't give to have someone share the load. I am exhausted.
He's been whining since I picked him up, and I understand, but my head is throbbing. I practice implementing responses and techniques I learned at parenting class on Monday. I am strengthened by my own work, so foreign from the way I was raised.
Finally I find the right medicine and as I reach for it he reaches out too, taking a generous swipe at the entire display and sending dozens of bottles flying. I can't take it anymore: I yell. I don't yell much these days, I'm proud to say, but this time I do and you are there to witness it. Why couldn't you have been there when I was taking deep breaths and mustering up stuff like, "I know that you feel sick. Mommy is getting medicine to help you feel better soon!" That was only 3 minutes ago.
But you saw what you saw. You shake your head and turn on your heel, declaring to everyone that "some people shouldn't be allowed to have kids".
Or maybe you didn't say it out loud. Sometimes I hear it so clearly it's hard to tell.
"If we have no peace, it is only because we have forgotten that we belong to each other."
- Blessed Mother Theresa