Hope on the Horizon.

Elias's back sways so much that Olive often imitates his walk, sticking her chest and belly out as far as she can, trying to be just like her big brother.

We worry about the strain on his spine as he grows. His crooked-tree posture that allows him to be upright, for now. We've heard of other CP kids who walk with assistance when young, opting for a chair by their teenage years as they gain weight and can no longer find their balance by a change in posture.

Who knows what the future holds for Elias.

But a friday appointment, with two pediatric orthopedic surgeons, both awkward and aloof, one from Seattle and one from Anchorage, left me feeling more optimistic than fearful.

Structurally, Elias's body is still ok. His poor posture is a result of limited muscle tone in his core.  His swayback is his way of achieving balance within the confines of a brain and muscles that struggle to communicate.

Surgeons look to operate, they love to operate, and neither professional could find a place to intervene. They said that just as his legs have gained strength with use, his core should too; and he may grow straighter as the years pass, instead of more crooked.

Fo a core workout they suggested outside time and play.

Outside time and play!

Good thing we have an uncoordinated-coordinated kid who loves nothing more than climbing on snow hills and tromping through the woods. And a soul who seems to always enjoy the process more than the goal.

Last weekend, we went to Seward, to Cuzuncle David's cabin above Lowell Point, our favorite getaway with acres of woods and not a neighbor insight.  While Olive and Nick napped on Saturday afternoon, Elias and I went for a walk in the woods. We started off on the "trail" to our future cabin site. Every fifth step or so I would sink in the snow past my thigh and Elias would laugh. "Do that again Mom! Sink again!"

"Its not up to me; its up to the snow," I'd say, as I pushed my way back to the surface, my butt grumbling in protest.

Every so often Elias's canes would sink all the way to his hands and he'd be stuck, grinning, like he couldn't imagine anything better. Anything better than falling. And laughing.

Falling and laughing.

"I want to go where the dogs are." Elias said, pointing up the hill, off trail. Tonsina and Jengo stood on the stump of an old growth tree, cut down years before Cuzuncle David bought the land. When this was an old logging site. Before the forest reclaimed the mountain.

"Alright, let's go. I'll follow you."

And so we made our way through Alders and around Devil's Club, until we found ourselves in the thick of the woods, on our hands and knees, crawling across the snowdrifts and under the brambles of branches.

"How are we going to get through here?" Elias asked when we reached a point with no obvious way out.

"I'm not sure." And I meant it. And for a moment, I questioned my sanity, trudging through the brush with a boy with CP, legally blind, the sun quickly setting.

I couldn't carry him, even on my back, without sinking even deeper into the snow. But if we both crawled, we not only evened the playing field, but spread our weight across the surface. Sharing the load.

"This is the craziest mountain I ever climbed in my whole life!" Elias said.

"In your whole life?" I laughed.

"In my whole life!" he said, accenting each word more than the next .

"Me too, Babe, me too."

We climbed over logs and crawled through Devil's Club with thorns longer than my fingertips. Just as I started to doubt my sense of direction, I spotted another clearing ahead, the one right off the top of David's driveway, overlooking Resurrection Bay.

"We're almost there!" I said, relieved.

"Where?"

"To the top clearing. Where David's old truck is." We sat beside each other, next to a fir tree; a small snow slide before us, followed by a steep climb. Trees everywhere. Branches in our hair.

"How do we get up there?"

I looked up towards the light and over at my boy. "We keep crawling."

When I finally reached back and pulled him up the steepest part, and we rolled into the open sky, with a clear path to the warmth of the cabin ahead, Elias peered back the way we came and said, "When do we go back in the woods?"

Comments

[Faye]

Elias has the perfect parents to fill the doctors' orders of outside time and play. :) I'm so happy to hear that you had such a great appointment and long weekend.

[Mary Miller]

It was so nice to see you guys this past weekend! I needed the hugs more than I can tell you....good to see Elias n' Olive and happy for your fambly to make it here regardless of the "winter wonder". Life is so funny....each day brings new surprises! Thank you for thinking of me....I think of you all often. Love from the othermother.

[Niksmom]

THIS is what you hold on to when the IEP's and eveerything else threatens to pull you under. THIS is the boy who will show them all.

[Greta]

It's funny how we sometimes need "experts" to say out loud what we already know deep within, not scientifically, but in our souls. You showing Elias the wilderness- expanding, wild, dangerous, liberating nature- is a gift, in my opinion, second only to love.

[danielle in zurich]

happy happy day when the surgeons say no need to intervene. and what a fab adventure--you just know it is the kind of thing he will remember forever and ever....crawling through the snow with mom. i love it.

[DavidS]

Beautiful story. Thanks for sharing with us.

[fleming]

sounds so perfect! That story filled me up for the WEEK!

[Christy]

Greta your words always speak to me, like we're walking along a rock wall together on our way to elementary school.

Mary, I always love hugging you and sharing stories-- you will never lose your title with me. We all miss you every time we don't see you when we're staying up the hill.

Thank you all for witnessing our lives and bringing your hearts and minds here to celebrate with us.

[StorkWatcher]

Elias makes me want to be able to experience the world as he does - with all the wonder of what he sees, hears, feels and does. He's SUPERBOY! I'm in awe of his ability to really live the moment - his joy abounds for miles....

[Julie A]

Dear Christy
I wanted to contact you but didn't know how so am leaving a comment here hoping you have to "approve it".
I am the preschool teacher who teaches special education classes in Michigan and reads your blog to be reminded of who I sit across the table from at meetings--our transition to kindergarten meetings are just starting and I had to share your percentage point post with some of my other teachers and therapists (giving you full credit of course). As we send our little ones on we are so often so proud of them and the receiving elementary schools are so afraid, but often shouldn't be. I feel we often lose sight of the fact that we are there for this child, this family and not to discuss why the child can't get the right level of service because the Teacher Consultant isn't in the building on Thursdays. Your essay really helped me find a new flicker of passion for making these meetings go right.
Thank you.
Julie A

[Christy]

Storkwatcher, Elias's grandma, Kathy, and I were just talking about Elias's knack for being in the moment and how not only does he force me to be more present but that it saves him at times from some of the negative social stuff at school. Thanks for your comment!

Julie A, I am honored that you shared my previous post with your team. I thought about emailing it to Elias's IEP team but didn't want anyone to take offense or worry too much about my emotional status since I don't usually share all my angst at work like I do here. I did however share at our SPED meeting yesterday something Elias's preschool teacher use to do at our meetings. She would begin by having everyone go around and share a strength they saw in Elias. This helped me know that despite their professional need to dissect him they saw and loved his spirit. It brought down my defenses and usually had us all laughing at his quirky humor.

Thank you Julie for writing and yes I do have all my comments emailed to me for approval. And read every one. Often twice:) If you (or other readers) ever want to write me outside of the comment track my email is [email protected]. I use to have it on here but I got bombarded by PR folks wanting me to promote their contests and new products b/c well you know I'm really into that sort of blogging. And the winner is...