“Every day is a journey, and the journey itself is home.”

♥♥♥

♥♥♥

Thursday, December 24, 2015

Holiday Spirit...Every Day

This is my pre-Christmas update—a story I’ve been wanting to share for a while. One that has touched our family’s heart. We hope it will touch yours, as well.

Zane’s had many wonderful experiences in his academic life. He’s had the great fortune of being included in the general education classroom since preschool. I think this has benefited him tremendously—especially since he’s so social and such an interpersonal learner.

But this third-grade year has been his best yet. Not enough can be said about how respectful the school and the students are with Zane. His elementary school has fostered a culture of acceptance. But it goes much deeper than that. Zane’s third grade general ed. teacher is beyond phenomenal. She has created a classroom that includes Zane in every possible way. One of the things she has put into place is selecting a buddy for Zane—a kiddo who helps him out during his time in her room.

I’ve seen buddies in action. I used to teach third grade and have been privy to students helping others in the classroom who need extra attention. Usually, they are girls who like to play a nurturing roll to fellow students who have an IEP. It is a beautiful thing. But it doesn’t compare with Zane’s buddy.

In the interest of privacy, I will call him T. He was not the first choice to be Zane’s buddy. In fact, I was told he didn’t make the initial list at all. There were some concerns about him. Again, in the interest of privacy, I was not told what these concerns were. I’m assuming behavior. But somehow the teacher believed in T. and thought it would be mutually beneficial to pair him with Zane. So he became the buddy.

I was invited to the classroom to observe Zane and T. together. I rolled Zane from his special education classroom to general ed. As soon as we entered, T. zipped to Zane’s side. I am used to taking the lead with Zane, so I was stunned to watch this eight-year-old boy in action. He greeted Zane, fastened the FM system (the microphone for Zane’s hearing aids) to his own clothing, put Zane’s tray in place, rolled him over to the math table where they were getting ready to play a game, and put a contrasting sheet beneath Zane’s tray so Zane could see the dice. They sat side by side. Zane reached out every once in a while to touch T.’s arm. 

There were three pairs of students at the table. Zane and T. were clearly a team. T. always turned to Zane to ask him what he thought they should do. Then T. helped Zane use his Go Talk (communication device) to make choices. They won the game.

Zane and T. were not just buddies. They were friends.

When math time was over, I wanted to be helpful in getting Zane back to his special ed. room. But T. had a system. He knew where to put the tray, how to undo the brakes, how to get Zane ready to go back. I asked if there was anything I could do to help. He finally said I could carry Zane’s tray.

Before I left that day, the teacher told me that T. had made some bad choices earlier in the week at recess. She spoke to him. T. reflected and said to his teacher, “What would Zane think of what I did?” He realized Zane wouldn't like his behavior. He was emotional, afraid of losing Zane as a buddy, and sorry for what he did. So not only is T. helping Zane, but Zane is also helping T.

For a Christmas gift, T. gave Zane a framed photograph of the two of them buddied up at the Turkey Trot—a Thanksgiving race around the middle school track. It sits in our kitchen, and I love looking at it from time to time.

This is our future. This is hope.

Right now, I feel like we’re living in selfish and volatile times. People are so concerned about their personal rights. I see a lot of adults and kids who act as though they are owed things, entitled. Many don’t even hold doors open for others, smile, or even pretend to be friendly. Yet seeing someone like T. gives me faith in our future. One eight-year-old boy has shown me the meaning of what it is to be human, to have compassion, to care about someone other than one’s self. And that gives me hope. 

Happy Holidays!


Tuesday, December 22, 2015

Happy 9th Birthday, Zane


It's been an eventful year for Zane, and I promise to update on the many things that have happened since my last posting in April of this year.

But today I want to wish my beautiful boy a happy 9th birthday. He has been through so much since December 22nd of 2006. He spent his very first day of life in an incubator in the NICU. I took one glimpse of him before nurses whisked him away. Then I didn't get to see or hold him for the rest of the day.

And while it is not always easy (and is often a whole lot of work), Zane has brought us so much joy and happiness. He can light up a room--light up a person--with his smile. He is an amazing son, brother, grandson, friend, student, and hospital patient. He touches so many lives by simply being here on this earth. He certainly touches mine. He has changed me for the better, showing me the path to greater compassion for others, teaching me how to appreciate life and what I have.

Happy Birthday to my baby. Because no matter how old you are, Zane, you will always be my baby.

Love you,
Mom


Friday, April 3, 2015

Steady Stream of Appointments


Just as I suspected, it was next to impossible to go even a month without a Zaner appointment. A few things happened:

Zane saw his orthopedic surgeon at the beginning of March. The doctor wrote some scripts, made a referral for a hand specialist, and sent us down the hall for Zane to be casted for SMOs (Supra Malleolar Orthosis—better know as ankle supports). Because of those things, we wound up with a couple of appointments at the end of March: One to try on and pick up the SMOs, and another to be evaluated for new hand splints.

However, Zane got sick. He wound up with a pretty nasty upper respiratory infection, which required the full regimen of nebulizer treatments, Flo-vent and Flonase, saline solution, extra fluids, and suctioning. I cancelled his two appointments. They were pushed to this week.

In the meantime, I’ve been trying to get a new contact prescription for me. But I’ve run into more trouble than I’ve ever experienced since I started wearing glasses at age 5 and contacts at age 14. The doctor cannot get my contact prescription right. So personally, I am going into my third office visit just to be able to see without blurriness and without feeling sick to my stomach. My blood follow-up and my annual mammogram (necessary because of the breast cancer back in 2012) are on hold for now. There are only so many appointments a woman can do in the course of a week, especially without jeopardizing employment.

Though all of this, we’ve been working overtime to get him a stander for both school and home. What a challenge that has been on both fronts. Yikers!

Zane is finally feeling better, we picked up his SMOs today, and he should have hand splints in 4-6 weeks.


We may be able to go through the rest of April without seeing any specialists. But heading into May, he has an appointment with neuro and a tentative lengthening with ortho sometime that month. But at least he’s feeling better and getting back to his happy self!

Followers

About Me

My photo
Susan is a YA and Adult contemporary novelist, as well as an advocate for social change. Her essays have been published both nationally and regionally, including a brief stint in The Daily Beast. She lives in the Southwest with her family.