I'll tell you what drives me crazy. That every year we need to prove Elias is still disabled enough to deserve services.
His three main disabilities--cerebral palsy, autism, and visual impairment--are lifelong conditions that do not really change from year to year. So why the mountain of paperwork? Why the call from the State that they need medical records, therapy notes, hospital stays, a 24 hour log, and oh, by the way we need it yesterday.
As if this whole parenting a child with disabilities isn't challenging enough, but then you add all these bullshit layers of bureaucratic process.
And sure I'm asking for help, but don't you dare call it a hand out.
Uncle Sam is not knocking on my door with hundred dollar bills in his pockets. He's making me dance on hot coals for a little help with medical bills and the occasional respite from constant care. I'm trying to keep my family from going bankrupt and keep myself from strangling my son. Call it welfare and cast me in the pond of government grubbing bottom dwellers, but don't call it easy.
Don't call it free. Describing in detail all of Elias's challenges falls on an opposite pole from freedom.
I have two Masters degrees and the endless processes bewilder me. The paperwork overwhelms me.
And then there's phone calls like this from my son's doctor's office: "Um, we got some paperwork from the State and Dr. Tulip wanted to know how you would answer the questions."
"Sure, I can help."
"So, the first is do you think this child needs institutional care?"
And scenes from One Flew Over the Cuckoos Nest flash through my mind before I answer. "Well, no but that's because we take care of him."
And yet I know Elias couldn't survive on his own-- but I don't let my mind travel too far in the future or into that what-if world where something tragic happens to me and Nick.
Or at least I try to retrieve it quickly when I travel there.
Return to the moment where every morning I change my ten-year-old's diaper, put his thick socks over his curled toes, remind him to eat his cheesy sausage as I answer his repetitive questions about the Alyeska chairlifts.
Where I often turn away from my son, hold my coffee cup with both hands, like a prayer, and exhale. But I always turn back towards my boy.
This is our life.
And I'm not asking for much, but I sure wouldn't mind a break from dancing through all these hoops.
You hold your son's hand in your left one and the sled rope in your right as you climb up hill, and you find yourself thinking about the days when you longed for nothing else than to walk hand in hand with your son.
He walks without his canes, through the snow on a steep incline, and you wonder where his gold medal lies.
They said he may never walk.
May never talk.
And yet you often long for silence when he assaults you with questions that stretch your brain as he dissects the smallest of details.
Mom, when we went to Florida did we fly into the C termnal or the B? Mom, Mom, how many escalotor are in the Orlando airport? Mom, Mom, Mom, what was our baagage claim number?
You want to scream sometimes, but you don't.
Where is your medal?
And it may not sound especially Olympic, but you stand vigil at every social event, never knowing when your son will turn from a crowd charmer to a screaming hyena hell-bent on some illogical vendetta. You calmly remove him from the room when all you really want to do is run away yourself, to a place where children are always cute and no-one stares wide-eyed at your screaming son.
Where is your podium?
During a day of errands with your first child, a stranger in line hands him two dollars. "Put this in your piggy bank," she says with a smile, and you're not sure how you feel about her charitable act, but his face tells you to accept the gift.
You see no pity in her eyes, only joy.
Who is singing her anthem?
A man approaches you as you leave Middle Way Cafe and says, "I use to be like him. Wore braces. Had a hard time walking. Had to work real hard."
"And look at you now."
"Yeah, it comes with time. Just like Forrest Gump, ya know."
And you do. You recall the scene often--run Forrest run--when the braces fall to the dirt and the legs take over, one step and then another, strong and sure.
And you want to spend more time talking to this Native man but Elias walks on, swinging his canes, dragging his right foot, asking you the name of each store you pass.
So you follow your son as you have since the beginning, since your water broke at 24 weeks and you sat in the passenger seat of the Subaru, feeling him drop, unable to control his decent, forced to let go, as your husband stared ahead at the barren road, foot down, hands gripped.
Where are the people throwing flower bouquets to these brave men?
Or to the man you spoke with in Seward, a friend of a friend, soft in the eyes, who mentioned a fiance' earlier in conversation and when you asked him about her, he responded, "Oh, she passed away in 2009."
And you know in that instant why you felt connected to this young man the first time you met. You have both been ripped opened by the claws of grief and chosen not to stitch your heart closed, but to remain exposed to all that hurts in this world.
And to all the tiny moments that create flickers of joy.
Like sledding down a steep Seward driveway, your arms around your son, snow in your face, both half-blind, laughing as you slide, without the roar of the crowd to carry you on, only your two hearts beating.
People often ask about the darkness.
How can you stand it? All those long dark nights...
Ah, but I get to see a lot of sunrises.
Beauty exists within the dark. And despite all the bad news that bombards us, goodness still reigns, even in an over-crowded Costco, the day before the Super Bowl:
"Wow the coffee aisle is crazy with people!" Elias says in his outside voice from his perch in the big part of the cart where he likes to be "jam-packed with food."
A woman laughs and repeats his comment to her male companion.
The free sample ladies banter about the Broncos and Seahawks. "I'm just hoping for a good game," I say, as I hand Elias a jalapeno popper.
"I'm rooting for the Bronco's for the first half and Seattle for the second half," Elias tells me.
"I'll just keep rooting for the losing team and hope for overtime. I always like the underdog."
With my list finally full of check marks, we weave around carts to the front of the store, but the lines find us first as they reach back into the nuts and dried fruit aisle.
As I wait I text Nick: Costco's crazy.
Elias loves to help unload the cart and is a bit reckless with his handling and placement of our blackberries and hummus and salami. I turn from loading Chobani yogurt just in time to grab the 18 eggs from his hands. A woman watches and smiles at me as I roll my eyes thinking about all those eggs scrambling on the floor.
As I'm swiping my card, I notice the man behind me picking our spinach dip up from the ground, the container busted, a small mess at his feet.
The cashier apologizes, "I think I ran the conveyor too fast." I look at his face and know he and Elias could ride on the same bus.
"Oh, I don't think we did the best stacking job," I tell him, as I continue to push buttons, not wanting to slow the river of people behind me.
"Who is going to clean it up?" Elias asks. He stands next to me now, waiting for his turn to push the green button.
"Someone will," the cashier and I say together. The cashier calls another employee to get me a new dip and I worry about how long it will take and all the silent sighs of the army of shoppers who wait.
When the cashier hands me my card, I look back again for the guy with my new dip, and see a fellow shopper, from the line next to ours, a woman my age with a son a little younger than Elias, step from where the spill once was, with a soiled paper towel in her hand.
"Wow. Thank you for doing that" I say.
She shrugs and smiles and throws my mess away.
I start to push my cart and realize Elias is not next to me.
He has walked right up to the woman and boy who each hold reddish purple smoothies. "Where did you get those?"
"Right over there," the woman points to the food court.
Elias turns back to me. "Mom, maybe we can get one of those."
Once again, I am thinking about time and getting out of Costco and even though its Elias's birthday weekend, I find myself saying, "Maybe another time."
As I turn away, the woman steps forward, "Here, I bought it for my older son but you can have it."
Oh the good. Its everywhere.
And finds us when we least expect it, even in a harried check-out line.
And Then We Pay It Forward
On the eve of Elias's tenth birthday we make gluten-free brownies and after a dinner out with just Elias-- "No Olive!"--we drive to Providence Hospital and make our way to the front desk of the Newborn Intensive Care Unit.
We leave the brownies with this note:
On Elias's actual birthday we invite our neighbors over for breakfast, our friends who kept Olive for the night so Elias could have his parents all to himself. After eggs benedict with bacon and sausage, Elias gets to open an envelope that says: Elias's Birthday Adventure Begins Here.
In it is a note: "Walk to 1500 Airport Heights Drive". And so begins our house number scavenger hunt, we vist ten houses, all friends in the neighborhood and at each house he gets another clue, plus a hockey puck with a letter on it that eventually spells out: Elias Is Ten.
At some houses he even gets balloons or candy or a present to open at home.
And as I walk around our neighborhood, with my family of four, I just can't stop smiling.
On this tenth anniversary of Elias's traumatic birth, I am no longer shackled by the memory of that day but able to fully celebrate my son's birthday.
My boy is ten.
And life is good.
"I don't want to go to school. Do you not want to go to school?"
"I do," I lie.
I really want to crawl back in bed and sleep till noon.
"I don't want to go to school." Elias leans his body against mine.
"I think you're just tired, so am I. But we're gonna have great days."
"No, I'm going to have a terrible day."
"Why do you say that?"
"Because I just am. I'm going to have a terrible day."
"I don't like school."
"Tell me what you don't like about school."
Elias rubs his eyes and stares at his toast.
I place my hands on his head. "Give me one good reason."
"I don't like all the stuff we have to do."
Ok, that's a good reason. I don't like all the stuff we have to do either.
"What would you do if you didn't go?'
"I don't know."
"Would you just sit there and say I don't know all day?"
This is how our morning conversations often go, but when its time to walk out that front door, Elias doesn't resist. I sometimes think this is just his morning habit or routine now, to say out-loud what many of us feel before 8:00 a.m.
Elias and I walk together to school every morning, down our front steps, along Logan street and around the corner to 16th. We talk about the icy sidewalk and often pass the middle school bus picking up students, which always causes Elias to stop and watch the flashing lights. When we reach the side of the school Elias like helping me unlock the door and once inside I give him his backpack so he can roll it down the hall. Elias walks easily into Camp Fire without complaint, often saying, "Do you like my rolling backpack?"
He doesn't cry when I say good bye.
But the other morning I did. I sat in my office, my back to the door, unable to keep my tears captured inside. And this is why.
Before I left the Camp Fire room, I watched as Elias put his canes in the corner, pulled the game Sorry from the shelf, held it with both hands, and carried it across the room.
Something I once thought he would never be able to do, walk while holding something, besides a walker or canes.
Elias walked up to the nearest adult and asked her to play. She was still eating breakfast with some other kids and declined.
I expected him to put the game down next to her and fiddle with the top, but instead he carried it over to a boy playing Legos and said, "Do you want to play with me?"
The boy shook his head.
Elias turned towards another boy, took a few steps towards him without getting too close, called him by name, and asked him to play.
Wasn't it just yesterday that I longed for him to engage with other kids in an age-appropriate way?
"No thanks," the boy said.
Elias didnt give up, he said a girl's name and asked her to play, and she too turned him down.
He carried that Sorry game to one more student, a girl on the spectrum, like him, said her name, "Do you want to play with me?"
She shrugged. "No."
Finally, the adult he first asked, told him she would play with him in a little bit; and unfazed, Elias said, "I was just thinking I was gonna have to wait."
Meanwhile he is still standing on his own, balanced, while holding that damn box in his hands.
And I think the ugly combination of Elias saying he didn't like school, and then watching him actually reach out appropriately to other kids, only to be rejected, made me lose it in my office chair and remain on the edge of weeping for most of the day barely holding it together to respond to everyone else's needs.
I had to keep reminding myself that Elias stood, still smiling, when I walked out of Camp Fire.
He is not me.
I am the one who took the rejections personally. Jumping to the conclusion that its not just that they dont want to play Sorry, but that they don't want to play with my son.
And I should pause here.
And tell you about the other evening when I picked Elias up from Camp Fire, and there he lay on the floor with an older boy, a boy who is often in the office, angry and sullen, looking at a giant dog breed book together, and how the boy said, "Hide Elias, hide from your Mom," and how he helped my son take cover behind the book, and oh, the smile on their faces when I pretended I couldn't find Elias anywhere.
I should just stay right there, in that moment, forever believing in the inclusive hearts of children.
Live in this place of acceptance and joy.
Not return to our home the last few evenings, where all I've wanted to do, in theory, is show my boy how much I love him, enjoy our family time where we sit united around the table, holding hands and giving thanks, only to have these moments squashed by Elias 's illogical rage over a water carafe not put in the exact right spot.
Or a sister standing on the toilet seat to brush her teeth when he doesn't think she should stand there and his way of expressing this is by slamming his body against hers.
I just want to just show him how much we love him, and need him, and want him in our life, but its hard when he's screaming: "I want to push Olive off the toilet."
"I want to hit you!"
"I want to hurt you!"
Its just so damn hard.
PS. I always feel better after writing and when I finished this I snuck into Elias's room, found him under his cocoon of blankets, placed my hand on his head, and listened to him breathe.
I had the honor of speaking to some parents tonight about the transition from Special Ed preschool to kindergarten.
And as I stood before them, Elias was no longer a week from turning ten but five, running down the halls of Northwood crying to go home.
And I was a younger Mama weeping in my car, trusting my child to the not-yet-known hands of professional educators, wanting to take him back with me but knowing that was no longer my role.
Pre-school was one thing. A few hours a day, a few days a week. But kindergarten represented the beginning of the end of baby-hood, as he entered a world I could no longer attempt to control, exposing my son, with all his complexities, to the hidden rules of school.
The schedules and bells, the social pecking orders, and all those boxes that can slowly restrict our sense of self, until we no longer recognize the natural light within. The lines and dots and letters from A to F (skipping, of course, E).
A place too of wonder and risk and friendship and challenge and identity and accomplishment and pride.
I am the child of private school educators, a product of both public and private schools, and a strong advocate for free and public education that serves all.
Every last one.
I live in an oil-rich state that doesn't adequately fund it's public school-- and as a Title One Counselor, I am all too aware of the desperate needs of our students.
My son entered kindergarten legally blind, wearing diapers, and walking with the help of forearm crutches we call canes.
And yet he knew how to count to fifty and to use the word abyss in proper context.
Yes, he has needs but don't all our kiddos.
We have kindergarten students living in over-crowded trailers, witnessing alcoholic rages, molested, abused, neglected.
We have students who come to this country as refugees, who know only trauma, as they force their tongues to pronounce English words.
We have students whose parents work two to three jobs just to survive and spend their time shuttled between caregivers wondering who will bring them home.
We have well-to-do kindergartners who only wish their Mom or Dad would put down the phone and play with them, just this once, just for a moment, please.
Oh the needs.
And yet kindergarten teachers somehow, magically, create a community of learners where children sit criss-cross applesauce and say their ABC's.
Where students, despite their differences, sing Twinkle Twinkle Little Star, together, and every last one of them shines a wee bit brighter because of what they've learned from each other.
(Sunset tonight, taken from the parking lot of Northwood Elementary School)
I am truly in awe of kindergarten teachers.
If you know one, give them a bow, or a standing ovation.
They deserve it, every last one.