Born too late

There’s a story on MSNBC ( about children with the condition Stephen had — apparently it’s called severe combined immunodeficiency or SCID. He had both SCID and hemophilia. Anyway, there is now an experimental treatment that allows children with SCID to live normal lives, and it works long-term. So there are now treatments for both of his conditions,

There was a big earthquake on the East Coast, and Hurricane Irene is heading towards, but reading about the treatment was like a blow. He would have been 49 now.

For a long time, until I met Tim, I never thought I’d get married. I had lost Stephen, and was dumped unceremoniously by the only boy I let get close to me in high school (he committed suicide the summer after my freshman year in college; I don’t know why, since he dumped me in our junior year of high school, and we hadn’t spoken since). I spent the rest of college thinking if I got close to a guy, he’d die, so I couldn’t get close to a guy. Tim snuck in under my defenses. 🙂

Stephen could be treated now, as could his older brother (who passed away in infancy from the same conditions). He was just born half a century too soon.

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Going to the end of the story

I’ve been blocked on this since before Christmas. I’ve decided to go ahead a post about the end of the story; hopefully I’ll be able to write more about the middle once I’ve gotten through this.

A few days before Christmas, when I was 12 and he was 14, Stephen came over after dinner, and Mom said we could play in our backyard. My sister came outside with us, and we looked around for something to do. Stephen went to the fence and pulled a vine from it, and started dancing around with it, waving it in the air. My sister and I joined in — Stephen could make even playing with vines fun. As we were dancing around and laughing, not paying attention to what we were doing, the vine Stephen was holding whipped around and hit my sister in the face. She cried out in pain, dropped her vine, and ran to the house.

I was torn. I knew my first priority was to go with my sister, but I wanted to stay and play with Stephen. I knew I had to go in, though. I was afraid we’d get in trouble for pulling off the vines and playing with them, though they were just weeds, not something my Dad had planted.

Finally, I threw down my vine and started after my sister. “Go home, Stephen!” I said, angry that I had to go in.

I got in the house and my sister was fine. We weren’t in trouble for playing with the vines, and all was well.


Christmas Eve morning, very early, the phone rang. My Dad answered and said “Just a minute.” He handed the phone to my mother, who talked briefly, then handed the phone back to him to hang it up.

“What is it?” Dad asked.

A pause.

“Stephen died” Mom said.

“Oh no” my Dad said. “It’s a tragedy.”

“Yes, it is” Mom said.

My sister said “Lisa?”

“I heard” I answered, my throat closing up.

A few minutes later, my Mom came in the room, wearing her robe, her eyes red. “Girls…” she started, sitting on my bed.

“We heard” I said, sitting up and throwing myself into her arms, crying. My sister gone on my bed, hugging her and crying also.

Stephen had been in the hospital. He had wanted to go to school for so long, his parents had finally agreed to let him go for his freshman year in high school. I didn’t know it until then, but he had hemophilia, and had been born with pretty much no immune system, so he caught everything that was going around. He caught chicken pox, and they put him in the hospital immediately. One of the lesions burst in the night, and he had bled to death.

That afternoon, my parents, sister, and I went to his home to see his parents. It was the hardest thing I had done. We walked through the kitchen; there were several people there, but I don’t remember who they were. In the den, the other woman sat on the sofa with a couple of Stephen’s male friends; we didn’t speak to them.

Stephen’s Mom was in his bedroom; his Father sat on the bed in the guest room beside Stephen’s. As we walked into Stephen’s room, Dad walked in to speak to Mr. G. Mrs. G looked up and saw us; my sister and I threw ourselves into her arms, sobbing, as she hugged us and said through tears “He loved you girls so much!” Mom spoke to her briefly, and we went home.

Stephen’s funeral was on Christmas Day, and my parents decided we’d miss the funeral and go to my Grandparents’ house for Christmas as usual. They had to wake me up Christmas morning to open presents from Santa, and once we got to my Grandparents’ home, I went back to sleep; they had to wake me for dinner and for opening gifts. I have no memories of the gifts or anything except for my Father telling my Grandparents “Oh, yes, Mary died” (referring to the wife of a good friend of his). Stephen’s mother was also named Mary, and I said “Mary didn’t die, Stephen did!” My sister explained to me my mistake, and I went back to sleep.

At the next rehearsal with Rainbow Girls, in which I had recently been initiated, several of the girls were whispering. I heard my name and looked up, and one of the girls asked “Lisa, did you know that DeMolay who died?” My throat closed up again. I nodded, then told them “Yes, he was my friend. My best friend.”

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all boy

One day Stephen came running to our door, so psyched he’d run all the way from his house.

“I’ve got something to show you!” he said, grabbing my hand to take me to his house. I stopped long enough to get permission, then ran to his home with him.

We went straight through the garage to his back yard, where he led me to a bucket sitting on the patio. He knelt beside it, and I sat down also.

Stephen opened the bucket with a flourish, and I looked in.

The bucket was full of live worms.

“My Dad’s taking me fishing!” he said, almost bouncing with excitement. “Look at the bait we got!”

This was a dilemma. I wanted to be as thrilled as he was, but we’re talking WORMS here.

He picked one up and held it out to me, and I backed off.

“They won’t hurt you!” he laughed. “They’re just worms!”

He turned away, holding the worm, and I gingerly reached in the bucket to pick one up. Unfortunately, I had grabbed one too close to the end, and when I picked it up, it tore apart. I was appalled, and my first thought was to drop the piece, but Stephen had turned around and saw me holding a piece of worm about an inch long.

“A baby!” he said, awed. “It’s a baby worm!”

I didn’t dare tell him otherwise.

“We’ve got to put it with it’s mother!” he said. “Which one is its mother?”

I looked down into the bucket of wiggling worms, then back up to him. How in the world would I figure out which one the piece I had came from? He was so upset that the baby would be separated from its mother — how would he react when he realized I’d torn off part of a worm instead?

I looked back into the bucket and did the only thing I could think to do.

“That one!” I said, pointing to one at random.

He carefully picked it up, and took the segment from me. Holding them in his cupped hands, he laid them together on the grass.

“There. Now the mama can take care of her baby. They’ll be safe now.”

I never told him the truth about the worm. He cared so much for all life, even worms that would be used as bait. I didn’t know then how fragile his hold on life was, or how soon his mother would lose the part of her that was in him.

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say cheese

One morning, Stephen knocked at the back door, incredibly excited — he had made a camera! He showed me the camera, which looked really cool, and took a picture of me. He’d taken a picture of Mrs. Hawkins, too. Of course, I wanted to make a camera, too, and he agreed to help me.

First we bugged my Mom until she found an empty shoe box for the camera, and then we set to work. We drew on the lens and flash, using colored construction paper and markers. A piece of duct tape held the camera closed on the left side (only one side, though, because of course you have to be able to open the camera to put film in and get the pictures out). We used a bolt that we screwed into the side to advance the film, and to open the shutter, we got a nail, and pushed it halfway through the top of the box, so it was sticking up about half way. We had to have film, so we carefully cut down pieces of white paper to about four inches by six inches. Those we placed in the camera, and closed the box.

Now that we both had cameras, we set out to take pictures — of my house, his house, the trees and flowers — anything we wanted. Since he’d taken a picture of Mrs. Hawkins, I took a picture of her, also, and then one of Stephen. The cameras weren’t perfect, of course; sometimes the film advance bolt would be screwed all the way down and we had to unwind it, and because when we pressed down the nail, it stayed down; we had to pull it back up. That was really annoying when we were trying to take pictures quickly.

Once we figured we’d used up all the film, we had to develop the pictures. We knew we had to have a dark room, but we wanted to be able to see what we were doing, so we used the front bathroom at my house. I got a plastic bowl from the kitchen, and set about mixing the developing fluid.

We went through the bathroom cabinet, and found all sorts of developing fluids — witch hazel, shampoo, lotion, alcohol…. We grabbed them all, and poured small amounts into the bowl, stiring carefully. It took some mixing and adding more of this and less than that, but we finally got the developing fluid right. Opening the cameras, we first put each piece of exposed film into the developing fluid and then rinsed them with water. Then we set them aside on a towel, and waited for the pictured to start developing.

Nothing happened. The film was wet and the paper got flimsy, but no pictures developed.

We finally reached then end of our patience, and threw away the exposed film. I dumped the developing fluid into the sink and washed it away, then rinsed out the bowl and put it in the dishwasher.

Back in my room, Stephen and I sat down and tried to figure out why it didn’t work. The bathroom probably wasn’t dark enough, and we may have gotten the developing fluid wrong; those were the two most likely problems. We didn’t want to try again, though, since we ruined one batch of film, and my Mom wasn’t happy with the mess in the bathroom.

Then Stephen got a brainstorm. He grabbed paper and cut more film as I rounded up crayons. We carefully drew each picture we’d taken (as many as we remembered, that is — we’d probably missed a couple), then colored them true-to-life.

Voila! We had our pictures — the cameras had worked! We proudly showed our photos to my Mom and Mrs. Hawkins, who agreed that the pictures were perfect and our cameras were wonderful.

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other woman

When Stephen was fourteen, he finally talked his parents into letting him go to school. High school! His excitement was incredible, when I would have loved to have stayed home and be tutored. Little things tickled him to no end, like the sound of the principal blowing against the microphone before he made an announcement — “You know what it sounded like?” I did, having heard it for six years of school, and it had gotten boring for me, but to him, it was a novelty.

Even though he was going to school, our friendship continued as before. We didn’t talk about his school much, just about what we were reading and what our life would be like when we were married after I graduated from high school. We would have two children; a boy, Stephen Wade, Jr., would be first, to watch after his little sister, Bethany Lee (she shared her middle name with my mother and me). He had the candles from his fourteenth birthday cake, a 1 candle and a 4 candle, which I found really cool because I hadn’t seen them before. We’d use those candles on his cake when he turned 41.

He would work, of course (though we didn’t know what his career would be at that point), and I would be a stay-at-home mom, just like my Mom. We imagined ourselves living in his house, though we didn’t have plans for where his parents would live. We’d still have his hamsters, and we’d have a puppy in the back yard. Stephen Jr. and Bethany would love the tree house as much as we did, and have sleepover parties with friends there (one friend at a time — it was too small for more than two people to sleep in). Stephen had invited me to spend the night in his treehouse with him; I’d sleep on the cot, and he’d sleep in a sleeping bag on the floor. I was so excited about the idea — I hadn’t been to a sleepover since the Twins had moved away. My Mom, unfortunately, wouldn’t hear of it. I couldn’t understand why, since she had let me go to sleepovers with the Twins, but she wouldn’t even consider it.

About a month into the school year, as we were talking, Stephen told me he was seeing a girl named Lana Livingston at school. She was a year older than he was. I felt like I’d been punched in the stomach until he explained that he was only seeing her because I was too young to take to school dances and stuff, since I was 12, and everyone in high school goes on dates. Once I got in high school, he and I would date because my parents couldn’t say I was too young. This made some sense, and I agreed to wait. I didn’t even feel jealous.

He never mentioned Lana to me again, and our friendship and marriage plans continued as before. One time I heard from on of the teenagers in the neighborhood that there was going to be a Fall Dance at the high school, and I was devastated, realizing that Stephen would be there with Lana. I cried to my Mom about it, and she pointed out that Stephen wasn’t going to the dance with anyone; he’d gotten sick again and was in the hospital. Comforted, I calmed down.


When I started high school, Lana was in my four-person squad in the band. Both of us played clarinet, but other than that, she was the opposite of me in every way — thin, long dark hair. She would barely speak to me. I wanted to be able to talk to her about Stephen, and, hoping she’d open up, asked “You dated Stephen, right?” Her response was a curt “Yes.” Not a productive start to a conversation, but I tried again. “He talked about you a lot.” He hadn’t, of course, but I was trying to befriend her. She tossed her hair and said “He liked me a lot.” We didn’t speak again, about Stephen or anything else.

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Stephen, Donna (one of the twins), and I had been playing one day when we started talking about how boring for us when I was always the wife, and he was always the husband. What if we switched roles? Even Stephen liked the idea, so we went to my house to switch clothes.

In my house, I went in the room I shared with my sister to change, and Stephen went into my brother’s room. Donna was the go-between, bringing Stephen’s clothes to me, and taking mine to him. When we got dressed and emerged from the rooms, we realized the problem of playclothes for kids — we both were wearing jeans, albeit the other persons (his were tight around my hips), I was wearing Stephen’s tank top, and Stephen was wearing my tee shirt. My hair was long, his short. Not as different as we’d hoped.

My Mom came back, carrying clothes from the dryer to fold up, and asked what was up. She thought the idea was hilarious, and picked up on the problem of our similar garb immediately. She serched through her closet and found one of her old maternity dresses, and Stephen wsa dispatched to my brother’s room to put it on. When he came out, we shoved a pillow underneath to make him look pregnant. Mom had pulled my hair back in a ponytail so it wouldn’t look long in front, and, to cover up Stephen’s short hair, wrapped a scarf around his head.

We were having a ball, me being the husband and him the (pregnant) wife. I tried to act as masculine as possible, holding my arms akimbo and my shoulders back, while he curled forward, hands protective on his pillow-belly, smiling and timid. We had to play inside, because we wouldn’t risk the neighborhood guys seeing him dressed as the wife. Donna had run home really quickly, and returned with her camera, taking a picture of the two of us in our role reversal.

My Dad arrived home from work, so it was time for dinner. We switched clothing back, and Stephen and Donna went to their homes.

Donna and her family moved, first to Pascagola, then Hawaii, and then back to Florida. On one of her visits to us, she gave me one of the pictures of me and Stephen in drag. I carried it everywhere until someone stole my wallet while I was in eighth grade. Taking the wallet and its contents (not much more than a couple of dollars and my library card) was nothing to me, but losing that picture was heartbreaking. I hope to someday make contact with Donna again to see if she has another of the pictures, or maybe the negatives.

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As it always seemed to be, it was a miserably hot day. Stephen and I were sitting in the double swing in his backyard, just swinging to try to cool off and talking. We were making plans for our family after our marriage, and I mentioned to him that I’d always wanted to be a princess. Of course, I wasn’t beautiful or rich, and in America we don’t have princesses anyway, but I’d always wanted to be one. It’s partially my Mom’s fault, I think — she’d awakened my sister and me at an obscene hour to watch the wedding of Princess Anne years before, and I’d been enchanted with royalty — and with England — ever since.

I’d probably seen a broadcast of 1965 Rogers & Hammerstein version of “Cinderella” recently, which always had me humming “In My Own Little Corner” for days afterward. I thought that Lesley Ann Warren was the most beautiful princess I’d ever seen, and hated that I had blonde hair and was overweight.

Stephen laughed at my wish to be a princess, and asked “Do you want me to call you ‘Your Royal Highness’?” Delighted, I smiled and said I did, and he said “OK, Your Royal Hiney!” and, licking his finger, drew a line down my cheek.

Ugh! Stephen may have been my best friend and future husband, but he was still a boy, and had just called me a hiney and got his spit on my face! I jumped up from the swing and started walking home, scrubbing his saliva off my cheek as I walked, furious at him.

“Wait!” he called, and I turned, ready to demand an apology. “Have you ever suckled the honey from a honeysuckle?” he said, surprising me.

Honey from honeysuckle? I’d never heard of it. He motioned for me to join him at his back fence, which was covered with a profusion of honeysuckle vines, overflowing with flowers that perfumed the whole yard.

I waited before I joined him, worried about the honeybees who were buzzing all over the flowers; I was terrified I’d get stung. He waved them away, though, and pulled one blossom from the vine. I joined him at the fence.

“Watch.” He gently separated the calix from the petals and slowly drew it out. As the stamens slid from the blossom, a clear drop of nectar suddenly appeared. Stephen leaned over and caught the drop on his tongue.

“It’s delicious!” he assured me.

I couldn’t believe that he was actually tasting something from a flower — I thought sure it was poisonous or something. He grabbed another blossom, and once again caught the drop of nectar on his tongue.

He didn’t drop dead on the spot — he didn’t even look sick. Maybe it wasn’t poison after all. I took a blossom, but tore it apart too quickly, and missed the nectar.

“Here” he said, gently tearing apart another flower, then holding it so I could catch the nectar on my tongue. It was sweet, and tasted as good as the honeysuckle smelled.

Delighted by the secret drops hidden in the flowers, I forgot that he called me a hiney and all but licked my cheek. We stood there, surrounded by bees collecting pollen (which I thought of for years as bees collecting honey), tasting the honey from the honeysuckle until it was dinnertime and I had to go home.

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