Every Day

“I don’t want to go to school,” Elias says every morning as he sits at the kitchen table eating half a sesame bagel with tons of butter.

And yet he walks out the back door to climb in the Chariot without complaint.

He opens the big glass door to Airport Heights Elementary all by himself and doesn’t hesitate as he walks in to say good morning to the office staff.

“I want to go home,” he says as he walks towards the Camp Fire classroom.

“At the end of the day we’ll go home,” I say. “We all have jobs to do.”

And we do.

Though how that looks is about to change.

Friday was Nick’s last day at Cook Inlet Tribal Council, the educational non-profit where he’s worked for the past seven and a half years. When Olive’s daycare officially closes on September 29th, instead of transitioning to a new facility or home, she’ll spend her days with her Daddy.

After circling this decision for weeks, Nick and I opted to cut expenses and gain family time.  To breathe a little easier in the mornings without trying to rush us all out the door to our various places of work.

So next time Elias stands in the hallway before school starts and says, “I want to go home,” I can’t respond with, “But nobody’s there.” Instead I’ll channel my inner cheerleader-- the one who almost auditioned for the cheer squad in eighth grade but opted to try out for the boys’ soccer team instead—and remind Elias of all the things he loves about school.

“But then you’d miss seeing your teacher and all your kids (he calls his classmates and fellow Camp Fire students “my kids”)… you’d miss recess and math and play time…”

Once the day begins he usually doesn’t want to leave. It’s the transitions that irk him, as most of us stumble over change.

He still sometimes resists his pull-outs, especially gym due to the noise level and chaos of two classes combined, preferring to remain in his comfortable classroom, but his resistance fades with the passing weeks.

The first few weeks the combination of his canes clicking along the laminate floor and his limited vision allowed me to easily hide from him. Once I ducked into the girls bathroom, as two third graders giggled, and waited until another teacher gave me the all-clear sign. But this past week when I ran into him he just smiled and said, “Hi Mom, what are you doing out of your office?” And then continued on his way.

At recess kids still ask me: What’s wrong with him? Did he break his leg? Why does he need those? But they seem to move on easily once I supply them with an answer they can hold.

They help him walk. His legs aren’t broken they just aren’t as strong as yours. He was just injured when he was a baby because he was so tiny when he was born that his body wasn’t quite ready to be here and so now he needs a little extra help to do some of the things that you can do.

“Is he better?” a girl asked me the other day when he ditched his canes to climb on the play equipment.

Ger still holds his canes, defending them from the other children’s curious hands, and Elias continues to do his own thing on the playground. Climbing up the stairs and going down the curly slide again and again. Kids whip past him playing chase, leaping onto the monkey bars, barreling down the slide.

“Other kids have a great time on the monkey bars,” Elias said to me the other night as he sat on my lap in the recliner. “Other kids can jump and swing but I can’t.” He said this while looking towards me, turning his head from side to side, his eyes never landing on mine.

Here we go….

“It’s just easier for them to control their bodies then it is for you to control yours. But they had to learn too.”

“When can I do it?”

“We’ll have to practice and learn.”

“When can we?”

Every day, Babe, every day.

Comments

[Mom]

Beautifully written and excellent answers for Elias and his classmates.

[Abby]

I am a lurker, but just wanted to give you a pat on the back for all the awesome decisions and parenting skills you and Nick demonstrate on a daily basis. Thanks for sharing your world.

[Christy]

Thank you Abby for de-lurking to give me a pat-- as I tend to me my worst critic, it sure helps to read your words.

And Mom, I love you:)

[susanna eve]

that sounds like it will work well for all 4 of you. It also takes off the stress of missing work for you if one of the kids is sick etc. Nick could even bring Olive to visit you at lunchtime:)

[alison]

You can always make money but you can't make time. Love that Nick gets daddy-olive time. It's a wonderful chapter of this amazing family story.
big hugs!

[Kimberly]

Your story resonates so much of our own. From difficult transitions to playground realities. Elias rockets off with my heartstrings because we see these same trials in Ellianna. She has a gift for looking at all the things she can do well and reveling in them. What does Elias love? What does he feel he is 'good at'? You are so strong for Elias in your explanations, you are candid and encouraging, never relenting but driving. Ellianna is in kindergarten and I go in at lunch daily to help kids with opening things and so forth and giving Ellie a bit of respite from the chaos she perceives. This has helped her to have positive and productive days at school. The first two weeks of school when I did not come in were agonizing, she cried all day there and actually lost her voice. Her little sister comes along too and enjoys the other children. I have to resist the fantasy of wanting to borrow Faith's ability to sociallze so easily and lending it to Ellie. I have to resist imaganing what she would look like as a child without CP in the context of her peers because that only produces pain and blinds me to the beauty of who she is, unique, strong, brave, and imaginative. Isn't it amazing that their struggles have produced a wisdom and strength in us otherwise unfathomable prior to their births?

[Sarah LaBonte]

I am so sorry Christy. It is so sad that Elias is starting to notice the things that he cannot do. It seems inevitable that eventually they look outside themselves and see their own deficits. I have a child who is on the autism spectrum and also had dyspraxia and childhood apraxia of speech. He has the low muscle tone that is characteristic of children on the spectrum. He has many challenges both physically and cognitively. It breaks my heart when he knows what he is supposed to do but cannot do. He feels so frustrated with himself. These children bring us so much joy and so much heartache. I am thinking of you and yours and sending lots of positive thoughts your way!

[susanna eve]

just another comment. For perspective, it is important to remember that there will be other kids without Elias' challenges who also can't do monkey bars etc. even NT kids vary widely in ability and interests.

[Faye]

I'm so happy for your family! I'm sure Nick and Olive will experience the majority of the changes, but you and Elias will benefit as well. Yay for more family time!

You have helped me to see the dreaded phrase "I can't" in a whole new light. Without it as well as words and acts of encouragement, we would never set limits for ourselves only to break through them.

[Kathy Sue]

Good for you all, that Nick and Olive get this time! No stress over looking for a different job, no stress over looking for a different day care. This choice might not be forever, but for now I am sure you are all relieved not to add additional changes. There is only so much a family system can take at a time.

[Barbara]

Early in our marriage we were not enamored of the 2FTparent lifestyle. So my Hubby was a FT househusband for 11 years. I've been the 'primary parent at home' for the past 5 years. As our youngest transitions to college next year we plan for me to go back to FT to pay for college and feather our retirement nest. No.regrets.