It was a day that started out extraordinary in its ordinariness. Just as when people in a car accident play the scene over again in their minds, wishing upon wish to undo the day, so too did I by the close of that spring day in 1999. That day my world turned upside down.
How It Began
“Aaron can you please sit still for a minute?” I asked laughing. My child crept, and crumpled up the tissue paper that lined the examining table. I put my hand on his belly preventing him from falling.
He continued to creep, so I put one hand over my eyes, “Where’s Aaron!” Where’s Aaron?
I don’t see Aaron,” I said, looking all around even under the white examining table. “
“Oh, there you are,” I retorted, tickling his belly in mock relief.
“Tee-hee,” my baby chuckled.
“Well, well, how is little Aaron?” Doctor Azariah asked coming into the stark white examining room. The odor of formaldehyde permeated the air.
“Getting to be a big boy, hmm?” the doctor peered out over her thin bifocals. I noticed her deep wrinkles as she asked, “Eighteen months, are we now?”
“Yes, he's eighteen months old today. We’re both so excited. Happy Birthday to you. Happy birthday to you. Happy birthday dear Aaron, Happy birthday to you,” I sang to him.
Not commenting, Doctor Azariah lifted him up and put him on the scale. “Twenty-two pounds, a nice healthy weight, “the doctor assured me. She took out her tape measure. “And twenty-eight inches long, pretty good. And his head circumference, hmm,” she said, draping the measure around his head, Doctor Azariah turned on her flashlight shining it into Aaron's eyes.
“Why are Aaron's eyes so swollen?” she asked.
“Are you asking me, Doctor?” Her question alone sent a red flag to my brain, and I began to feel uneasy.
“Mmm,” the doctor offered, noncommittally. Then she began to examine Aaron's skin. She counted his birthmarks. “One, two and three. Please turn him over so he is lying on his belly.”
Unnerved by the irregularity of counting birthmarks, my hands shook under his tush and head, before I gently flipped him over. Red flag number two for me. I watched Doctor Azariah feel the bones on Aaron's spine.
“He walks already, yes, Kim?”
I set him on his feet then and walked to the far end of the room, beckoning Aaron to come to me.
When Aaron reached me, Doctor Azariah nodded her head. “You can get him dressed, Kim.”
“Just a minute, Doctor. You just counted his birthmarks and examined his spine. Is something wrong?” I lifted Aaron onto the examining table to begin the task. He wiggled around again. In the uncomfortable silence that permeated the air for a long moment as Dr. Azariah noted something on the chart. Finally, she said, “Kimberly, I would like you to make an appointment with a pediatric neurologist.”
“Pediatric neurologist? Why?” I counted to ten to keep myself calm.
“Aaron needs to be checked for a condition called Neurofibromatosis, otherwise called NF.”
I felt dizzy, unnerved, grasping the side of the examining table for a moment, as if the universe shifted. How could one person's words change everything so suddenly? Just this morning, I remembered going into the baby's room dressed in my blue warm up suit, ready to start the day, and looking out the fourth-floor apartment window at the beautiful spring sunshine. Pretty pink petunias lined the walk downstairs. I had turned to Aaron as he put one leg over the side of the crib. “I see you're ready to start the day too, huh sweetie?”
I drifted back to the present reluctantly. I must face the doctor even if I don't want to. “Neurofibroma? What the heck is that?” I asked, feeling the heat rise to my face.
“It's a condition that some children develop in early childhood. I don't know for a fact that Aaron has it, but he has to be checked.”
“But can't you tell me anything else about it? Why are you leaving me in the dark about this?”
“Go to the library,” Doctor Azariah explained. “You can look it up in the Merck Manual for medical conditions.”
“Neurofibromatosis,” the doctor corrected, turning the doorknob to leave.
“Wait a minute, what makes you suspect that Aaron may have it?”
The doctor turned around. Sighing, she came back into the room and shone her light on the birthmarks.
“You see these?” she asked, without waiting for an answer.” They're called café au lait spots because they're the color of coffee. Anyone with six or more is suspect for this condition. His spine seems okay. He's walking straight even for a toddler. Let's just see what the neurologist has to report.”
“But ... but …” I began, “you always told me that I had a healthy child!” Tears began to blur my vision.
“Those assumptions were based on information before this checkup,” the doctor said, smiling at me. “This new information has to be checked out. It may or may not change everything,” she added, leaving the room.
How comforting. I began putting Aaron's blue stretchy back on him, remembering how I had changed him earlier that morning at home: my arms cradling his little body as I moved from crib to changing table, sprinkling his bottom with snowy powder as I changed his diaper. I could remember the joy of leaning down to inhale the pure scent of Aaron mixed with talc, cooing,
“You’re so delicious, buddy.”
I turned again from that memory and faced dizzying thoughts.
How arrogant of the doctor! Not even to take the time to give me a full explanation. What is wrong with Dr. Azariah?
Another wave swept over me like the ocean, and I sat down. I looked around, but the stupid swivel seat remained the only place to sit and think.
And what is this NF stuff all about? What does it have to do with his birthmarks? His spine? His eyes? Would there be other potential problems too? Why didn’t she even write down the name of the condition for me?
I pondered all of this as my heart again began to race, palms dripping down with newfound moisture. I faced Aaron, his stretchy all snapped up. “How could anything possibly be wrong with you?” I asked him almost expecting an answer. “You're so perfect.”
“Ma-ma,” he called, reaching his arms out to me.
I picked him up. We have to go to the library,” I explained to him as we left the room. I jockeyed my way back to the reception desk and then whipped out my checkbook. I wanted to get this visit all paid off since most likely it would be our last with the doctor.
How could I ever trust her? I needed a pediatrician who talked to me.
I pushed the stroller quickly out of the doctor's office.
“Fower,” Aaron chirped, putting his hand out to a daisy.
“Yes flower,” I answered him. “We don't have time, Aaron. We have to go to the library, remember?”
Maybe it's not so bad. Maybe it's something like having allergies, where you must immunize yourself and take medication, but it's a livable condition? Finally, we arrived at our destination. “Oh darn, the condition had been called, what?” Such a funny, long name. A name that I wished I’d never heard.
A pay phone beckoned right outside the building. I deposited my change and said to
Nurse Trudy, “I have to speak to Doctor Azariah right away!”
“I'll see if the doctor is free,” Nurse Trudy answered.
“You make sure she is ... please!”
Come to think of it, there had been another time that Doctor Azariah had refused to communicate with me and Hal. Aaron had a virus, Fifth disease. Hal asked the specifics of the condition, what we could expect, and how to help Aaron to feel more comfortable. “You want me to explain to you in fifteen minutes,” the doctor had replied, “what it’s taken me thirty years to study?” The woman had an attitude and we should have left her right then and there!
“Yes, Kimberly.” The doctor’s voice sounded tired. “What can I do for you?” I’m outside the library. What is the name of the condition that you mentioned?”
“That's right. Thank you,” I said, as the phone clicked off. “Neuro-fibroma-tosis,” I repeated we walked through the automatic doors into the library.
The library seemed devoid of human life. Yes, there were the usual clerks at the checkout desk. The computers had been turned on but weren’t used, I noticed walking by.
“Boy, boy,” Aaron called as I pushed past.
“Boys?” I asked myself. I couldn’t see a person sitting at a table. Maybe it’s better this way, I thought approaching the reference desk. No chance of meeting anyone I know asking me what I'm doing.
“Excuse me, where's the Merck Manual for Medical Conditions?” I asked the reference woman quietly. Is there an echo?
“Did you want the home edition?” the thirtyish librarian asked me. “That one's more understandable to most of us,” I stared at her funky short haircut with spikes sticking straight up. Her voice seemed so loud in such an empty room.
I wrinkled my forehead, fixing my eyes on the woman's silver moon earrings, her spiked brown hair.
“Yes, that would probably, uhm, be better,” I stammered, not sure I wanted to research this at all. I'm afraid of what I'll find. And how will I deal with it?
The woman walked over to a shelf, and took the volume out.
It’s much smaller than I thought it would be.
“Let me know if there's anything else you need.” The librarian clopped away.
“Thanks,” I answered, turning to my son. “Ok Aaron, you have to be really, really good here, so Mama can read something important. I know ... your favorite book is in the diaper bag.” I rummaged for a few minutes. My hands trembled as I placed it into Aaron's hands. “Your favorite, Moon Boy.”
“Moon Boy,” Aaron repeated happily.
I sat down on an orange cushioned chair at the deserted table, moving the stroller next to me. I thumbed through the Merck manual, looking over the table of contents first. There wasn’t a category for Neurofibromatosis under childhood conditions and disorders. I thumbed the pages through several times, and then flipped back to the index. Finally, I found it under Tumors of the Nervous System.
I read slowly that many children with NF have brown spots called café au laits, over their chest, back, pelvis and knees. Some are born with the spots. Others may develop in early childhood.
Anywhere from age ten to fifteen, or sometimes later, small lumps or tumors can develop externally or internally. These tumors are mostly benign and can be removed surgically or by radiation depending upon where they are. They may develop on nerves in which case, the entire nerve might have to be removed. The tumors tend to multiply. Where are those nerves? Behind an eye? On a spine? Where?
At this point, I closed the book, not being able to read any more. Tears fell down my face.
Aaron with tumors? Repeated surgeries? Possible radiation treatment? ... And what could have caused this? Could it have been the chlomid that I took to get pregnant? The Excedrin PM the doctor let me take for headaches? My genes? Hal’s?
Nobody on either side of the family had anything like this that I remember but I must ask my mother to be sure. “Oh my god,” I mumbled. “I feel as if I'm being sucked funnel-like into a deep, dark hole, one where I'm stuck in the middle. I'm way too far from the bottom but not close enough to the top to climb my way out. Will I ever be able to climb out?”
I looked down at Aaron, who chewed on the corner of his book.
“Mama, cy? He asked, looking up at me.
I picked him up from the stroller, held him close to me, smothering his face with kisses.
“I love you my Aaron. You are my heart! Let's get out of here!” I left the book on the table, holding Aaron and pushing the empty stroller with my other hand, as we headed home.
“It’s nappy time, Aaron,” I said, upon our arrival home.
The knob on the musical mobile twisted in my hand over the crib. I kissed him once more, “You have sweet dreams, my … heart.”
I could hardly speak, my throat felt so scratchy and parched. I walked into the living room, pacing, and not knowing what else to do.
“My thoughts, my emotions, I’m in such a whirl,” I said out-loud.
I walked back and forth through the narrow rooms of our apartment, our haven. I don’t know what to think or feel. Who should I talk to? My husband, Hal? Maybe I should wait till he comes home? I don’t want to upset him at work. Isn’t it enough for one of us to be so over-wrought? I didn’t want to take a chance that Hal might not be able to concentrate, give him peace for this one day. Besides, I had to gather my wits about me. What about my mother? Perhaps she can think back on our family history?
“I have to call her,” I said, punching in the numbers.
“Hello,” my mother said cheerfully.
“Hi Mother, it’s Kimberly.”
“Darling, how are you?” Mom asked. “I’m just about to go out with the girls to Atlantic City.”
My mother would be standing there dressed, ready to go out. Maybe primping in her front hallway. She’d wear a pants suit, perhaps her ivory one with her favorite cameo pin affixed to the lapel. I pictured her whitish hair expertly coiffed.
“And Hal? And the baby? If everyone is all right, I must run dear. I’ll call you tonight, okay?
Maybe, I’ll hit it lucky!”
Inhaling a deep breath, I cut in before she hung up, “I don’t want to disturb you or upset your err plans, Mother, but I just came from Aaron’s eighteen-month check-up.”
“Oh, and how is our little buster doing?” Mother chuckled.
“I’m … I’m not sure, Mother.
“What do you mean?” I pictured my mother straightening her hair in place as she asked.
“The doctor noticed these, these coffee colored birthmarks on Aaron’s body. She thinks it might indicate a condition. I have to take him to . . . to a... pediatric neurologist.”
“What?” my mother asked. “People have imperfect birthmarks all the time. He’s much too young for melanomas! Why a neurologist and not a dermatologist… what else did the doctor tell you about it?”
Holding my stomach in, I said, “She didn’t tell me anything except to go to the library and look up this condition in a medical book. Dr. Azariah seemed pretty certain it had to be a neurologist.”
“All right Kimberly, try not to get hysterical right away. What did you learn from the book?”
What a time for my mother to criticize me! So tactless. Tourette’s of the mouth, one of my friends was fond of calling it when people didn’t watch what they said.
“Hysterical, Mother? This is my baby we’re talking about! M. My one and only child! He can develop tumors at any time from adolescence on.”
“Tumors?” my mother asked.
“Yes, they can develop on top and underneath the surface of the skin. They’re all removable and sometimes occur in odd places. That’s when the condition becomes problematic.”
Why am I holding back on the full story, like where the tumors can be? Who am I trying to protect? Will it protect Aaron if I don’t discuss possible complications? Will it just go away by not discussing it?
“I’ve never heard of anyone from our side who ever had anything like that! Kimberly, he will be all right. I went through so many things when you were growing up.”
“This is a little beyond the ordinary, Mother.”
A pregnant pause ensued. “Do you remember my friend, Marla? She’s the one who’s a head nurse in the radiology department at Mt. Eden.”
“She’s taking the day off and coming with us to Atlantic City. I’ll tell her and maybe she can give us some advice. And the gall of that doctor to send you to the library! Uhh … there are all kinds of quacks, Kimberly please, do not get yourself into a panic over this. It will work out, one way or another.”
“How can I not be in a panic, Mother?” I asked her. “He’s just an innocent little boy.”
“And a wonderful one at that, darling. I think I should still go on the trip with the girls, so I can talk to Marla. I promise, I’ll call you back tonight and let you know what she says.” “Okay Mother, I’ll be here,” I sighed. I’m dying and my mother’s going to Atlantic City?
I walked back into the living room, my silent feet on the carpeted floor, aimless and pacing. Should I lie down? Start looking up pediatric neurologists in the insurance book? Wait for my mother’s friend to tell me who to go to?
“I have to do something, I may go crazy with worry otherwise.” Jumping up from the couch, I walked to the closet.
The health insurance booklet fell into my arms from the hall closet and loose papers followed. I thumbed through the lists of medical specialists. I read, “Pediatric Allergy,
Endocrinology, and Orthopedic Surgery.
“Damn it, there isn’t a category listed for Pediatric Neurology.”
Then one page at a time, my eyes finally focused on Neurological Surgery. There was one doctor listed, a Dr. Neil Feldstein, and he wasn’t that far from us!
My hands shook, and I punched numbers into the phone once again, as a nurse picked up.
“Doctor Feldstein’s office.”
“Hi, my na-m-e is Kim Segal. D…d. does Dr. Feldstein evaluate children for neuro…neurofibromatosis?” I asked, remembering the dreaded name at last.
“Yes, he does.”
“I need an appointment for my eighteen-month old son.”
“As a matter of fact, we just had a cancellation. He can fit you in next Wednesday. Let me see … yes, at ten a.m.”
“Okay, we’ll take it.” I gave her our information.
“Okay, next Wednesday, ten a.m.” the nurse confirmed. “Make sure to bring your insurance cards.”
“See you then.”. I put the telephone back on the receiver. Then I went back into the living room, needing to lie down.
I jumped up from her paisley brocade couch as I heard Hal’s key turning in the lock. Reaching up with both hands, I smoothed my hair, and glanced at my clothing.
“Have you been sleeping, Hon?” Hal asked, coming into the room “You look a bit tired.” He mumbled, coming over in his lumbering gait. His lips met my cheek. “Where’s Aaron?” he asked.
“Oh, I’m just going to see if he’s up from his nap,” I murmured.
A few minutes later, I emerged with Aaron, freshly diapered, hair combed. I put him down on the floor next to his favorite toy. It’s a cone with colorful donuts that get stacked in size order. Aaron loved to take them off and put them on again, over and over. I heard his little giggle floating to the ceiling like a balloon.
Hal sat on one of the Cherrywood chairs, his legs stretched out almost to the other side. He read the newspaper.
I sat down in an accompanying seat. M.my eyes focused on the print of wild irises blowing in a field on the opposite wall. We chose it together before we got married. “Well,” I said, “here we are.”
“You okay, honey? You look pale.”
“I’m… I’m okay.”
“Hey buddy,” he said, turning around to Aaron for a moment.
“Dada,” Aaron answered, as if seeing Hal for the first time, and stretching his arms out wide. Hal stood, then bent down to pick him up. “Hey, how’s my guy?” he asked, sitting him on his lap. “How’d it go with the check-up?” he asked me.
“I can’t talk about it now,” I whispered.
“Why?” he asked and turned to look at me. His eyes stared into mine.
“Be-because things . . . didn’t go so well.” I swallowed, holding back my tears.
He put Aaron back down on the floor next to his toy. “What is it Kim?” he asked gently, his brow wrinkled in concern as he walked over and sat next to me. He put his muscular hand over mine.
I proceeded to tell my husband the whole, long story about the visit to the doctor’s office, the library, and finally the phone call to Dr. Feldstein’s office.
Hal nodded soberly. “Well, it has to be checked out, of course. I’ll come with you. Please Kim, I’m not jumping to any conclusions and I don’t think you should either. Naturally, I don’t want our boy to have anything! But think of my mother with her diabetes. She has a very mild form of it. She keeps it under control with exercise and diet, and, and there are degrees of everything.”
“This isn’t so simple,” I answered.
“No, but does it mean that every case is a serious one?” He took his hand on top of mine again, patting it reassuringly. “Come let’s look at this boy of ours,” he said, rising from the chair.
We both sat down next to our son. I studied Aaron’s red curls, his face scrunched up as he worked at his task. How can anything be wrong with him? I asked the question of myself for maybe the millionth time that day.
“He’s a beautiful, wonderful child, Kim. Nobody can take that away from him, no matter what. Hey, I have an idea! Why don’t we take a walk into town? Maybe buy some ice cream for the three of us? How does that sound, Aaron?” he asked. “Would you like an ice cream?”
“Ice ceam,” Aaron moved his head up and down as he repeated the word.
“But we haven’t had dinner yet,” Kim answered. “Not that I’m hungry.”
“Forget dinner,” Hal replied. “We all need a treat tonight. The change of scenery will be good for all of us.” This time, Hal placed the baby in the stroller. He took his turn to push the stroller and I held tightly onto my husband’s arm, as we walked out of the building into the late afternoon sun. I was scared out of my mind, before we even set foot in the first doctor’s office.
On our way into town, we passed the local park. I always liked when we went there together. It had that family feeling. The park we favored had been a pretty big place with winding paths for bicycling. The swings, climbing apparatus, and round-about were on grassy areas.
“Pak, pak,” Aaron screamed delightedly.
“We could wait for the ice cream man here,” Hal suggested.
“Fine,” I answered, still holding onto his arm. We parked the stroller by a nearby green bench. “Do you want to go on the swing?” I asked Aaron.
Hal put Aron in the swing and started to push him gently back and forth. I stood still by a metal post, watching. There were, of course, other children on nearby swings. One little girl with red ringlets matching Aaron’s own sat on an accompanying swing. That child’s mother smiled as she pushed her child, too.
Another baby boy in a pin striped baseball hat sat in the swing on the other side of Aaron. A young teenage girl, perhaps his babysitter, stood by pushing him, a bland expression upon her face.
Some older children spun on the round-about, faster and faster. The faster, the better, it seemed. Their parents sat somewhat apathetically on park benches, waiting. How lucky they were to sit seemingly without a care in the world.
Tears streamed down my face. What made these mothers and children different from Aaron and me? I had an uneventful pregnancy, a fabulous birth, had reveled at every developmental milestone, and naturally loved my baby.
Hal turned to me. “Come on, Kim, he’s beautiful. Look at what a good time he’s having on the swing!”
I attempted to smile.
“Ding-a-ling,” Norm’s ice cream truck rang its welcoming chimes.
“Guess who’s here, Aaron? It’s Norm! Dixie cup for you?”
“Ice ceam,” Aaron repeated.
“I feel like a strawberry sundae, Norm’s specialty. What about you, Kim?”
“I’m not really hungry.”
“Oh come on, live a little! How about your favorite Chocolate Candy Crunch Bar?”
At that, I smiled a little. “Okay,” I answered.
“Hey Norm,” Hal announced as we arrived at the ice cream truck. “We’ll have one Dixie cup, one strawberry sundae, and one Chocolate Candy Crunch Bar for my lady here.”
“Coming right up,” Norm, a robust man, gladly obliged. A line of families waited their turn behind us.
“There isn’t any difference between those families and us,” Hal remarked, mirroring my thoughts. We’re a together couple with a wonderful baby. We’ll get through this Kim, I promise.” He put his sticky fingers on my arm and gave me a quick peck to confirm it. I held onto him, as if for dear life.
“Ready for gym class?” I asked Aaron, gently lifting him from his car seat and into my arms. On my other shoulder, I hung the green Beatrix Potter diaper bag with little bunnies on it.
“Ma-ya?” Aaron asked, as we started walking toward the Gymboree center on his little sneakered feet.
“Yes, you’re going to see Mayan today! Isn’t that great?” Today was the day Aaron and I join my friend Fiona with little Mayan. I felt as if I’d known Fiona forever. In reality we’d known each other since we were both pregnant. I swung the heavy doors open, still carrying Aaron on my hip.
“Fiona,” I called, hamming it up this time as I noticed my friend with her husband and daughter sitting in the waiting area. What is he doing here?
“Kim, it’s good to see you!” Fiona answered.
“And Saul, how are you?” I asked, facing Fiona’s husband. “What a happy surprise. I didn’t know you were coming today.”
“Fine, just fine,” slightly balding Saul said, rubbing his mustache. A nervous habit. “I wanted to see our two little ones playing together,” he added, still stroking it, “and how they interact together in a class.”
Great, just when I wanted to have a private conversation with my friend! I forced myself to smile. Mayan and Aaron hadn’t wasted any time in finding each other. They were having a little baby race, up and down the narrow, though brightly lit, hallway.
“I win, I win,” Aaron. chanted
“No, I do!” said Mayan as she sat on the floor.
Oh, no, please don’t let either of them start wailing. I can’t deal with this, I silently prayed. How can we distract them?
“Take another turn, Mayan,” Saul called out. Yeah, Saul.
“So, what’s doing with you?” Fiona asked. “Everything go okay with Aaron’s check-up?”
How do I reply without crying? Without collapsing? Without showing what’s been going through my mind since Dr. Azariah? Oh, god, how am I going to do this? I asked myself, closing my eyes for a moment.
Just then Patricia, the blonde, perky, thin instructor, who most likely didn’t have any children of her own, ushered us into the class. Other mothers herded their toddlers into the larger space of the room.
“Well, it’s parachute time, Mayan!” Fiona announced, clapping her hands. I followed her, Aaron holding my hand, and so did Saul with their daughter.
“Okay parents and babies, gather round!” Patricia screamed over the noisy din. Fiona and Saul sat down on the colorful parachute with Mayan between them. I squeezed myself on the other side of the circle with Aaron. Other children and mothers crowded the area.
Patricia began singing, “Hello to Maxwell, hello to Rona … hello to Mayan” and finally,
“Hello to Aaron.” My son waved his hand when he heard his name.
“Let’s give the babies a ride everyone. All the kiddies in the middle.”
The moms and Saul began singing as they turned the apparatus. “The parachute goes around and round, round and round, round and round, the parachute goes around and round all through the town.” Then we shook the rainbow-colored parachute up and down. The babies chortled gleefully.
Excuse me if I’m too worried to sing! I forced myself to smile at little Aaron.
Mercifully, parachute time ended when Saul pointed, “Do they like the double slide over there?”
“Oh yes,” Fiona answered, “it’s their favorite.” Aaron and Mayan immediately ran over to it. Aaron climbed up on the slide part, and Mayan slid down on the other.
“They seem to like it,” Saul agreed.
“Do you think?” Fiona asked him, her buxom chest heaving up and down with her laughter. “And they can never switch sides.”
“They only like to stay on the same side they start on,” I add. “If we try to get them to change or get them to try the mini balance beam over there,” I point, “or the see-saw, they have a hissy fit.”
I can’t believe I’m making conversation like this with my friend’s husband. Why did she have to bring him? Why couldn’t I have this time to talk to my Fiona?
Suddenly Aaron said, “baw” indicating the yellow plastic ball lying on the mat.
“Yes, ball Aaron,” Fiona answered him. “Would you like to roll the ball with Mayan?” Her brown pony tail swinging to my face, she went to retrieve the ball.
Saul lifted Mayan as I did the same with Aaron, positioning them on the mat to play. “See? Roll the ball, roll the ball,” Saul said, demonstrating the technique. “Take turns. Now Aaron, you roll the ball to Mayan, okay?”
While Saul became involved in this activity with the children, Fiona turned to me and asked,
“So, you never said, what happened to Aaron with his check-up? Everything go okay?”
I cast my eyes down and said, “No,” not allowing the tears to spill out.
“What happened? What’s wrong?” Fiona asked, putting an arm on my shoulder. “Do, do you know what a café au lait spot is?” I asked my friend. “Oh sure, it’s a little coffee colored birthmark.”
“Right,” I said, finally looking up to Fiona’s face, her eyebrows arched in concern. “Anyone with six or more is suspect for a certain disease or disorder.”
“You’re kidding!” Fiona hugged me. Her ample chest felt maternal and close next to me. “Can you talk about what it’s called and what’s involved? I mean, are you able to talk about it?”
“I need to talk to you Fiona or I’ll . . .I’ll explode!” I touched Fiona’s arm with a trembling hand. Thankfully, Saul involved himself in the game with Mayan and Aaron. It would be unbearable to think of explaining all this to both at the same time, sympathetic as Saul might be.
“It’s called Neurofibromatosis, otherwise known as NF. It involves tumors, both internal and external that are all benign and can be removed, b-but…but there are two problems,” I added the tears falling down.
“Take it easy,” Fiona whispered, putting her arm on my shoulder.
“The problem is,” I continued, “that even if removed, the tumors tend to multiply. The other one is they can occur in strange places, like behind an eye or on a spine. Oh, God, Fiona, what if he goes blind? Do you see those beautiful twinkling eyes like bluebells?” I asked, my tears spilling over.
“Let’s go into the lady’s room where we can hopefully have some privacy,” Fiona told me. “Saul can watch the children.”
“Saul,” she called as we started walking, “why don’t you try them on that yellow wavy slide over there? Try to convince them! We’re going to the ladies’ room.”