Following Elias

To My Dear Readers,

I'm thinking about taking a break from writing my blog this summer. Feeling called to be away from screens and out in the dirt. Want to relieve the pressure I feel when I don't post for a week and give myself the freedom to not write.

And yet I'm also hoping that by not writing my blog, I'll finally take the time to read over what I've written about Elias (and Olive and Alaska and myself) over the last 9 years and start working towards a book. Or at least longer essays. Some way of making sense of all these different strands.

I feel the need to reflect on the past to remind myself that Elias's current oppositional behaviors equate to progress. I need to remember there was a time I worried he wouldn't be able to do anything on his own, talk, walk, breathe.

Elias telling me he doesn't ever ever ever EVER want to go to bed is actually a miracle in itself. Just hard to remember the whole miracle part (or is it science, or strength of will, or...) when he holds a fistful of his sister's hair.

The problem is I don't know if I'll be able to not write here, at Following Elias, because I will miss hearing from those of you who comment. I'll miss mining for words and getting feedback on what I find in the dark alleys of my mind. As well as the skylights.

I'll miss this community. I'll miss knowing you're all out there, all over the world, following along with my family.

So maybe I won't take the whole summer off, but I'm giving myself permission to stop posting for awhile.

I promise to write if any major life changes happen during our months of endless sun.

Until then, I'll be outside.

With love and respect for all,

Christy

What Day Is It Again?

After camping in Seward for the long weekend and then returning to seventy-degree weather in Anchorage, where I've been spending the long days (sunrise 4:38, sunset 11:18) working in my gardens, I feel more grounded, literally, with soil under my nails and in the cracks of my fingers, than I have for months.

I went from: Wait, wheres my phone? if I wasn't looking at it or some other screen every hour to: Phone, why do I need that?

Unplugged.

Not checking mail or FB or the news compulsively, as if more information held the potential to free my soul. As if the answers to all of lifes questions could be found within this never-ending web of communication.

I havent found the answers in our soil, a mixture of sand and hummus, but my need to know diminishes with each flower I plant.

Elias continues to challenge me to my core but the sun seems to mellow my reactions to his rage.

"You seem frustrated right now," I say, as Elias screams and swings his arm at me.

"I want to hit you!"

"Are you mad because the game changed? Because Olive added water to your plane? She's allowed to change the way she plays Bud."

I knew when they started to play airplane again, that it would not go well. The previous evening, Elias and Olive pretended to fly to Florida, as Nick and I sat in the sunshine drinking cold beverages and watching them actually play well together for the first time in what feels like months. Elias added security and baggage claim to the airport and they pushed their babies in their strollers around the terminal. Are we there yet? Elias would ask Olive. No not yet. Now you ask me, he'd say. Are we there yet? Yes! Ok, lets go. They repeated this sequence multiple times and even checked their babies at the gate to be loaded under the plane. (Oh, if only..)

So when he initiated the game again, I knew there was no way Olive could duplicate the process exactly and sure enough when she filled a water jug from my garden bucket, he almost scraped her face on our new concrete walkway.

Elias looks at me when I tell him its ok for Olive to change the way she plays. "But I want it to always stay the same!" he cries. 

Oh, to hear him voice his needs, progress indeed.

"But Babe, make-believe play always changes."

"No! No it doesn't change!! I'm gonna dump her water out!!"

"Then you don't get to play with her. And I know you had fun playing airplane with her yesterday."

The slightest change in the environment can throw Elias's world. Turn him from the cute and curious kid to a hyena in the house.

Unpredictable. Wild.

All brain stem and fight. No frontal lobe and reason.

No the boy I love. But I love him still.

Because love for your child, like time, doesn't stop; even when you cant recognize your baby in the boy who says he wants to hurt you. And so you respond as best you can, knowing that some days you'll be all Mama Bear growling at him and throwing him down when he goes after his sister. And other days, fueled by soil and sunshine, you'll simply say, "Elias, you seem frustrated right now."

And when he still can't settle and ends up in his room for an extended break it will be your daughter, an hour later, who reminds you that, someday, they will be alright, these contentious siblings of yours.

"Sorry Mama," Olive says and you look up thinking she stepped on a flower or spilled your water. 

"Sorry for what?"

"Sorry that Elias hit you."

And you thank and hug her and know that as much as she is the source of his jealousy and frustration now, she will learn not to provoke him, to play by his rules while helping him understand ours, to be his voice of empathy, his advocate, his friend.

Someday not so far away.

And the plants will grow...

Happy (what day is it again?) Friday all!

The Happiest of Fridays

It's finally warm.

60 degrees and abundant sunshine.

The kids finished yesterday.

My office is almost packed and in a matter of hours...

...I'll be out for the summer!

Can you say happy?

Writing and Erasing Tonight

Another hard day.

I'll share some pictures of Olive instead of mining my mind.

Soccer star bright.

May all your butters fly.

And we wake to a better day.

I know this is Alaska, but really...?

Taken this morning, as light snow continues to fall.

Usually I'm planting by now, overwhelmed by the many shades of green, not hunkered down longing for a snow-less Spring.

At least play-off hockey is on TV. (If only my kids would let me watch it.)

Ok, so what's the good news?

Olive has not only slept in her own bed for over a week but for most of May she has gone to sleep on her own without me pretending to sleep alongside her, as long as I say, "I'll be right back."

"You'll be right back Mom?"

"I'll always be right back."

"And Daddy will be right back?'

"Daddy too. We'll always be right back."

Sometimes she comes out crying or needing another book or baby or water bottle. But some nights we never hear from her again.

A little window of time granted.

More good news?

After months of worry about my job security due to budget cuts, it looks like I'll be walking to my neighborhood school again next fall, holding Elias's hand as we slowly make our way down the sidewalk, Elias stopping every few feet to ask me a question.

"Mom, do you not want to go to school?"

"I do want to go to school."

"No you don't."

"I really do."

And I usually mean it.

Though I wouldn't mind moving to Hawaii right about now, as the May 18th snow continues to fall...

Why I'm Not yet Crazy

"Mom, what if you stood on the corner and sold wine. What if you sold wine to people we didn't even know!"

Oh Elias, you often leave me speechless.

During an event last night, I ran into folks I hadn't seen for years. Each one asked, "How is Elias doing?"

Um...

Depending on our familiarity, I answered this question in a variety of ways.

"He's doing good. Can you believe he's about to finish third grade?"

"He still has his challenges but he has a lot of strengths too."

"Driving me crazy. You know I thought all his physical challenges were hard, but his behavior issues are the most exhausting of all."

The truth is, I'm just so damn tired. Tired of feeling stressed most of the time. I read somewhere that mothers of children with autism have stress levels similar to combat veterans; and that we work, on average, an extra two hours a day compared to other moms at this unpaid job of parenthood.

I believe it.

And autism is just one of Elias's multiple disabilities. Legally blind, with cerebral palsy, the boy is a poster child for stressed-out parents. At least I'm not standing on the corner asking people to give me money for wine.

Not yet.

When a child with special needs enters the family, eight out of ten marriages end in divorce. Eight out of ten. Shit, those are bad odds.

I will always be grateful to Laura, the night nurse at Providence who sat Nick and I down that first week in the NICU, when Elias's weight dropped to one pound six ounces and we didnt know if he would survive, and said: "Marriages end here. You need to talk to each other, and listen. You need to take care of each other in order to take care of your son."

Nick and I followed her advise and instead of shrivelling amidst the trauma of a baby born-too-soon our marriage grew roots, anchoring us to the earth, as the tendrils reached into the depths of our hearts and beyond.

Nine years later, we stand together, stronger still.

And I swear, I would be out on that corner if it weren't for Nick.

I don't often write about him or our relationship because, honestly, loving him is the easiest part of my day. And I tend to write more about the challenges, as well as those moments of clarity that only arise after clawing through the muck, the beauty we notice when, bloodied and weary, we finally stop doing (or swearing or whining or sobbing) to look.

With Nick, its more like air or the ground beneath my feet. Steady, constant, like a heart beat.

Easy, in the most intricate way possible.

Like Mother, Like Daughter

 

Honored to be the woman between these two bold souls.

Happy Mother's Day All!

 

And He's in the Race Afterall

Olive loves racing me to get dressed in the morning and afterwards will parade around the house saying, "I beat you! I beat you!"

I usually let her win but the other day I chose to get dressed quickly and when she saw me dressed she said: "Now we are both beaters!"

Elias doesn't participate in our races and tends to sit on his chair in his room, swinging his legs in his fleece firetruck jammies, content to wait me out till I finally help him. He rarely plays in his room by himself unless I ask him to get dressed, then I'll find him on his rug with his Play-mobile RV. He'll lie on the floor and look at a book. Line his cars up on his mats. Anything but actually follow directions and change his clothes.

Olive loves taunting him too. "I beat you Elias! I beat you!'

"No you didn't!" he'll say, his immediate reaction to all her claims. If she says yes he'll say no, if she says no he'll say yes, and they'll continue this argument with no memory of the original question until Nick or I intervene.

The other night, Nick had to work late and the kids and I were finishing the oh-so-exotic quesadilla dinner I made us when Elias said, "Is it almost time to get into PJ's."

I looked at the clock. 6:40. "Not yet but soon."

Elias got up from the table and practically ran to his room.

A minute or so later I heard, "Mom! Mom!" I found him half-naked and struggling to get his shirt off his broad shoulders. 

"Nice work Bud!" I said, as I pulled his shirt off his head, surprised that he initiated this change all on his own instead of us dueling over it in an hour or so.

I left him to finish the job and returned to the kitchen where I sat down next to Olive and squinted in the bright evening sun. Elias soon joined us with a wide impish smile, walked right up to Olive, leaned towards her face and said: "I beat you Olive!"

Happy Friday All!

One Molecule At A Time

Nine years ago today, after 94 days in the NICU, we finally brought our baby boy home.

I didn't know then that Elias would never catch up, the myth of the former micro-preemie turned all-star athlete carried me through more sleepless nights than I can count. As I sat up with a mechanical pump attached to my breasts at 3:00 a.m., I imagined Elias running across a lined field.

I always assumed I'd have a healthy child. 

With Nick and I as genetic donors, I imagined a soccer-playing, kayaking adventurer with a small but stocky build.

I never could have predicted Elias.

Even after more than three months in the hospital, multiple surgeries, including placing a reservoir in Elias's brain, I still believed he would overcome it all. He would be the miracle child, not just for living, but for surpassing every expectation.

I ate hope for breakfast, longing for lunch, and dreams for dinner.

This is how I survived Elias's infant-hood.

I couldn't absorb all the dire predictions. The possible vision impairment, cerebral palsy and autism that all turned into reality.

Nine years ago today, I just wanted to see my first child under natural light, outside of the alarm-soaked windowless NICU. I wanted to hold my baby in my arms in my own bed for the first time. I wanted to believe that now that we were finally out of the hospital everything was going to be ok.

And if I could whisper in the ear of my sleeping self nine-years-ago today I'd say, "Keep believing."

I wouldn't mention a word about Elias's current aggression, his incontinence, his lack of balance. Not a single word.

This journey for me has been all about learning from what is right before me. And taking in what I see one molecule at a time.

No more.

If the doctors labeled Elias with all his current diagnoses on discharge day, I would have fallen into a desperate hole and failed to bond with my son.

I know this.

I am no angel chosen by God to parent a special needs child. I did not arrive at parenthood's door with a wealth of compassion and knowledge about children with challenges. If anything, I held them in an uninformed disregard.

A former college athlete who moved to Alaska for the physical challenges of the outdoors, the last thing I thought about was the need for accessible playgrounds or to banish the casual use of the word retard as a put-down.

Elias made me the person I am today. Every day he makes me stronger. Every single fucking day.

And yes, it seems like we've had more f-word days than good ones lately but today was a good day.

And I'll take it.

Elias spent the weekend with his grandparents in Palmer and I think he needs time away from his three-year-old sister who has already surpassed him in every measurable arena. I think the root of his aggression is frustration but he doesn't have the emotional vocabulary to say, "Its hard having so many challenges."

He sees other kids running and somewhere deep down he knows he's different. So he pulls Olives hair or scratches Nick across the face leaving blood lines so we'll remember.

This is our baby boy at nine.

This morning, I participated in a nine-mile bike race with 700 other women while Elias went to church with his Grandma and Pop. "Did we go to church to celebrate my homecoming?" he asked tonight after I told him he got to stay up extra late because it was his home-coming day.

"Yep, everyone there was celebrating you." My miracle baby. Not for surpassing but for being.

After a mixture of snow and rain all day Saturday, the sun came out today, just in time, and we spent the afternoon outside, biking and playing street hockey with the neighbors.

Elias may not be able to hit the puck too well but he wants to play. And he's encouraged by all the grown-ups in the neighborhood.

He's loved by so many and its not a pity love. Its not because of his challenges, but because of the way he freezes the world for a moment and makes you look.

He takes you out of the quest for the finish line and forces you to notice the way the gravel shimmers in the light, just so.

Morning Visitor

Happy Friday!