Since I Last Wrote...

Buds have burst into a sea of green, as leaves emerge on our countless trees; the sun stays up past 10:00 pm and rises before six in the morning.

Our kids stay up past bedtime, playing outside in the spring light, and wake up tired for school, but with only ten days left till summer break we can muddle our way through the grouchy running-behind mornings knowing that soon the start of our day will slow down, as schedules slip away, replaced by the open air of summer vacation.

A vacation that will involve packing and moving from Anchorage to Seward, a little bit at at a time, as we travel back and forth over the summer months, with plans to be there full time come August.

 

Since I last wrote, I submitted fifteen pages of a manuscript to the faculty of the Kachamak Bay Writer's Conference and attended rehearsal for next week's Arctic Entries storytelling event. After struggling with what to focus on for the conference submission, starting and deleting multiple drafts, my Dad asked, "Well, what have you been thinking about lately? Maybe it would be therapeutic for you to write about whatever's on your mind?"

God I love my Dad.

I hung up with my parents, threw my notebook in a backpack, and headed to the Chugach Mountain Range. I hiked up Flattop and sat against a rock and wrote. I wrote about Elias's meltdowns and how they affect Olive and the fire that arises in me when my growing boy lashes out, claws drawn. I wrote and I wrote and I combined these penned words with some former blog posts to create an essay about the darker side of parenting a child with special needs. And as usual, I felt much lighter when I was done.

 

Since I last wrote, Elias has not erupted. Not once. No wild banshee in our living room. No mad screaming: "I want to hurt you!" We are going on three weeks now of a household truce without swinging arms and mayhem. Of course, as I type these words, I think: There I go again jinxing the tranquility. And if it is hormonal, then we would be due for the monthly surge right about now. But I'll take the calm before the storm, or even better, no wild winds and torrential rain in the forecast. And if/when it comes, we'll hold on to each other and try to keep from falling down.

 

Since I last wrote, the state of Alaska decided that Elias no longer qualifies for services under the Child with Complex Medical Needs waiver. "Wow he's high functioning, " the state nurse said back in January when she walked into our house for an assessment. And I wanted to shake her and let her know that just because he can walk and talk does not mean he can survive out in the world without supports. If we lose this waiver we would lose funding for his after school program and respite services. So yes, we will appeal, we will fill out more forms and jump through more flaming hoops while painting the worst possible picture of our son. But we wont like it. Not one bit.

 

 

Since I last wrote, our beloved Ms. Julia, Elias's Respite Worker since third grade, and Teacher Assistant from first through third, has moved from Alaska to Virginia. She has been gone for a week and I already feel the black hole in our family structure. She was who I could call anytime to help for an evening out or a weekend away. She was like a second grandmother to Elias and one he never had to share with his sister. She came with a loving husband, Fred, and son Desi who also doted on my boy.

I excepted the meltdowns to begin with her impending departure, but in typical Elias fashion he focused on her airplane flights and schedules and spoke with excitement about her upcoming travel plans-- and I am still waiting for the reality of this loss to hit him. If it even does. As my boy's ability to adapt never ceizes to amaze me, even as he resists change. He seems to stay in the present instead of dwelling on what might have been.

 

Since I last wrote we celebrated Elias's 12th anniversary of his homecoming day. The day we finally left the NICU and brought our baby boy home. A day when I wanted nothing more than to lie in my own bed and hold my son, without the fluorescent lights of a hospital shining down upon us. No doctors or nurses. Just a mother and a child.

We celebrated with a fire pit and neighbors, the kids taking turns on the swings, climbing our giant birch tree, playing wiffle ball in the yard long past bedtime, staying up with the sun. After the kids finally went down, Nick and I sat by the fire talking about all the places we've been and all the changes to come.

 

 

Since I last wrote, I missed writing here.

Happy Friday All!

 

Comments

[Sarah]

Since you last wrote, we missed you.

[Kristen H]

Happy Mother's Day! You're a fantastic momma, Christy!

[Danielle]

I missed you. Happy to hear the past weeks have been easier. And looking forward to hearing about your move...your writing...your summer. best, Danielle

[Christy]

I'm curious about the article Chelan as our experience so far has been positive. i'll keep you posted when we actually live there.

Thanks all for your ongoing support of my family and this blog, it means the world:)