Captain Jacktastic

Coming up on twenty years ago I met a man.

This isn’t going where you think it’s going.

It was a sultry summer night in Utah at a house party under a tree. I had a slight crush on the guy throwing the party but it was this other man who has made a lasting impression on my life and is one of the finest examples of humanity I’ve ever had the pleasure to meet.

His name is Clay.

We became fast friends. We took road trips with my daughter, who was then three, to interesting places like Fossil Butte State Park in Wyoming. We went to parties together. We went to dinner together. We laughed together and we were quiet together. It’s then when you know that you have someone special.

Clay was married at the time but his wife, a lovely woman, worked out of state. Over the course of our time in Utah Clay and his wife separated. It was an amicable separation but a separation does not come without wounds. I recall accompanying him to their shared storage unit so he could begin the property portion of that separation. It’s always fun to look at the things other people choose to keep around but I knew that day was hard for him.

It wasn’t long before I reconnected with an old friend which would turn into a 7 year relationship. Clay also met someone. He met her online in the early days of internet dating. She lived in Alabama and a had a young daughter. My new boyfriend and I made the decision to move to New Orleans. Clay and his new girlfriend would move to Eureka, California. I went with him on the day he bought an old Jeep, the car he would use to move his new family to their new home.

Less than a year later I received the birth announcement in the mail. Clay and his girlfriend had a beautiful baby boy. His name is Jackson James Carver and he shares my daughter’s birthday. I looked at that photo, a delightfully squishy baby all dark hair and bright blue eyes, and I was so happy. I knew Clay would make an amazing father.

In the early 2000’s I wasn’t using email regularly but I’d write letters to Clay and sometimes we’d talk on the phone. Things weren’t going well. Little baby Jack had a disease called tuberous sclerosis, which can cause a multitude of severe symptoms, the worst of which is the development of large but benign tumors in the brain.

The seizures started when Jack was just a baby. Life flight trips to hospitals in San Francisco became routine. Little Jack had brain surgery to remove as many of the tumors as they could, the ones that were causing cranial pressure and affecting other portions of his brain.  Then it slowly became clear that Jack had autism as well.

Clay and I kept in touch as I moved my family from New Orleans to Hawaii. He had returned to university to study special education all while managing his son’s life-threatening condition. And his relationship was falling apart.

I never met Jack’s mother but she and Clay separated when Jack was about five years old.

But Clay wasn’t alone. One night Clay went to his car to find a note under the windshield wiper. A woman had spied his Mystery Science Theater 3000 bumper sticker and couldn’t resist.

Enter Tina.

When we began planning our trip we knew that we had finite time in the United States and that was hard. There are so many people that I’d love to see, people who live in amazing parts of  the country. But since we had to head west and eventually south I knew Eureka had to be on the list. I hadn’t seen Clay in far too long and I wanted to meet Jack.

And I very much wanted to meet Tina.

When we arrived in Eureka after a full day of switchback turns and passing lanes from Lassen National Forest there was Clay. Big, solid, and smiling from ear to ear, just how I remembered him.

And there was Jack, now 14, in a wheelchair due to a recent fracture of his leg. The medications that he has to take cause osteoporosis. I smiled at Jack and, per Clay’s instructions, said, “Hi Jack! I’m Cate.”

“Hi, Cate.”

Will introduced himself as well, and Jack replied in kind.

Clay, always the consummate host, offered us wine and food and I looked around their lovely, cozy home with a sweeping view of the Pacific and Jack’s “spinning garden”. Pinwheels big and small, plastic and metal, were firmly planted in the corner of the yard.

Jack likes spinning.

Tina wasn’t home when we arrived but I was anxiously waiting. She and I had been friends on Facebook for some time, and I knew her to be as fierce with a sewing machine as she was with her heart. I expected a rare breed of tormenta.

Then, there she was. All hair and smiles and hugs and she grabbed my face and said, “Look how beautiful you are!” Then her attention went to Jack.

It’s not often that you can see love as a physical thing. In most cases love is intangible, a feeling, a knowledge, but when I watched Tina greet Jack my first and only thought was, “This is what love looks like. Love is Tina Carver.”

Tina and her daughter, who was on vacation while we were there so we didn’t get to meet her, swept into the lives of Clay and Jack and made what could have been a pitiable situation a thriving one. She dove heart first into Jack’s condition, learning the ins and outs of a mysterious disease like tuberous sclerosis, and started a blog called Captain Jacktastic to muse, share information, and let all of us know more about the disease and about her boy.

We spent five days with Clay, Tina, and Jack and it was glorious. We visited the redwoods and ate sushi. Tina made a makeup bag and a pair of pajama pants for me. I learned that Jack asks for things by saying “Yes, chips!” or whatever the thing is. Jack also decided that Will’s name is “Wow”.

“Hi Wow.”

It was adorable.

One morning while Tina was working Clay, Jack, Will, and I took a boat ride around the bay near Eureka. It’s one of Jack’s favorite things to do. It was a weekday and there weren’t too many people waiting for the boat, but Jack stands out. He was excited and impatient and didn’t hesitate to vocalize this. The few families that were waiting were polite in that way that we’ve been trained to be polite in the presence of a special needs child which, in many cases, is with furtive glances and turned backs. Since Jack was in his wheelchair we got to board first and were seated at the back of the boat.

A few of these families had teen children, likely Jack’s same age of 14. Of course, they weren’t rude but there were stares. As I sat there, taking some photos of Jack and Clay, I saw these kids looking. All I felt was pride.

They don’t know Jack.

On the early morning that we left we whispered a goodbye through the window to Tina, her sleepy face so beautiful and so lovely. We got on the highway and headed south and I turned to Will and asked what he thought of my friend’s family.

He just shook his head.

“That’s not a family. That’s a clan, a tribe. Few people will ever have what they have.”

He’s right.

 

Author’s Note: While I am against censorship in all forms I have received some comments on this post that I have chosen not to make public. I understand there are two sides to every story and I know only one. I have retracted a portion of this story to reflect this. However, this post, which celebrates love in the best possible way, is not the place for negative conversations. All comments are reviewed by admin before approval. Any further questions can be emailed directly to me at cate@thelifenomadic.com. Thank you.