Roses, as usual. Check, check, check. Developmentally spot-on. Yes, he can stack blocks. Yes, he knows his letters, can even read some words. He can hop on one foot. Heart sounds good, lungs sounds good. Speech is crystal-clear. He was hamming it up for the doctor as usual, enjoying all of her little tests. She, a sort of youngish grandmotherly type, was soaking it all up. It was the day after Dylan's 3rd birthday, and he was declared a perfect 3-year-old boy. We had one foot out the door.
"Well OK, Dylan, you've been a great patient today," says the doctor. Then she turns to me. "Did you have any other questions or concerns?"
"Oh, well there is one thing I wanted to mention," I say. "He can't hold his palms up."
"Excuse me?"
"His palms? He can't turn them up. Come here, Dylan." He crosses the room and stands with his back facing me. I reach down and turn his palms up as far as they go, which isn't far. His palms are facing one another. I'm already wondering how we are going to spend our afternoon. It was a beautiful Indian summer day in November. Maybe I could drag his easel outside and let him paint. Or maybe he can ride his tricycle around the block, stopping periodically to put leaves in the bag I am carrying. Later, we'll use the leaves to make crafts. Maybe we'll make apple cider and eat the leave-shaped cookies I bought at the store, the ones that are identical to the cookies the little boys are eating in his picture book. He's going to get such a kick out of that.
"I see," the doctor says, studying his arms. She swallows, looks down, and reaches for Dylan's chart.
I knew. I knew in that moment it was something. Of course it is something! How did I manage to convince myself that it was nothing? Everyone else can reach their palms up. How could I have been in such denial? I feel the blood drain from my face. The leisurely autumn day I was picturing in my head is erased, etch-a-sketch style, in one violent shake.
I start to babble. "Well, it's something my husband noticed a few months ago. We figured since it hasn't impaired his development in any way that it couldn't be a big deal, so we decided we would just mention it at his 3-year well visit. I mean, he's hit almost every developmental milestone early. His fine motor skills seem fine. And he's our first child, so we didn't even know if turning their palms up is something children are born with the ability to do, or if that comes later..." I realize, as I say this last part, how absurd it sounds. Denial is not a force to be reckoned with.
She seems to ignore everything I just said. "You had a c-section, correct?"
"Yes."
"Because the cord was wrapped around his neck, and his heart rate kept dropping?"
My stomach drops. My blood starts to race; I can hear ringing in my ears. I swallow hard. "Yes."
"Ok. Well, normally for something like this I would send you to a physical therapist. But given the nature of his delivery, and the fact that the oxygen was cut off from his brain, I think the next step for him will be neurology."
"Neurology? You...you want to send Dylan...to a neurologist?" Dylan, my boy who said his first word at 5 months? Who knew all of his animal sounds at ten months? Who knew his alphabet at 15 months? Who could now, at just barely three, count to forty? Who has consistently been, since the day he was born, curious and imaginative beyond my wildest expectations? No, no, no...
"Yes. There could be some kind of brain damage from the delivery....it could be cerebral palsy..."
Neurology. Brain damage. Cerebral palsy. Dylan.
"Cerebral palsy?" I asked, trying to remain calm. "But Dylan is very smart..."
"There are different levels of cerebral palsy. Different magnitudes by which the brain can be damaged. Some cerebral palsy patients have full mental capacity and just experience physical symptoms, or vice versa. Or some combination of both. Of course, I'm not a neurologist," she adds quickly, seeing the terror in my eyes, "so I don't want to speculate too much here. It could be any number of things."
"Well...what...what will the neurologist do? I mean, will Dylan need to get an MRI?"
"Most likely. Neurologists like to run a lot of tests."
"They sedate small children for MRIs, don't they?"
"Yes."
Neurologist. Cerebral palsy. Any number of things. MRI. Sedation. Dylan.
"Ok, so I'm going to give you the name of two pediatric neurologists. If this first one doesn't take your insurance..." Her tone is so flat that it's unsettling. She is acting like she's just told me he has an ear infection and she can't figure out why I am so rattled. It's just brain damage, lady. Why are you making such a big deal out of this?
Tears are falling at this point. I can't help it. I watch Dylan, hopping on one foot, laughing. He is singing the Spider-man theme song. I note the way he holds his arms: always a bit bent, forearm nearly perpendicular to his upper arm. I always thought it was so cute. Just a cute little kid thing he would grow out of. Ian and I used to joke about it.
On our way to the lobby, the doctor stops us and hands me some print-outs. "I didn't want to mention cerebral palsy and not give you any information about it."
I glance at the print out, then up at her. I am afraid to ask, but I have to.
"Doctor," I say. "Please be honest with me. Is this what you think he has?"
She nods. "I think it's a good possibility." A good possibility.
"And what I want you to understand is that cerebral palsy is not a degenerative condition. It never gets any worse than it is now. I mean, you know, of all of the things it could be..." She trails off, and I understand now what she is saying to me. Cerebral palsy is the best option. She is being optimistic.
Dylan notices my tears on the way to the elevator. I am openly sobbing at this point. People are stopping to stare. "Mommy, what's the matter?" He looks scared.
I flash a huge, surely creepy smile. "Nothing sweetie! Mommy's fine! Everything's OK!" Somehow, he buys it. He smiles and goes back to his hopping and his Spidey tune. Then suddenly I have to grab his arm and run into the bathroom. "Here play with this!" I say, handing off the iPhone as I pull him into the stall with me. When I vomit, he giggles. "Mommy barfed! Ewwww!"
I wipe my mouth and sit with my head between my knees while Dylan plays Monkey Preschool Lunchbox on my phone. Breathe. This is happening. This is really happening. This is not a dream. You are not watching a movie.
And I wasn't even thinking about Dylan. In that moment, the most awful moment of my life to date, I could only think of one person, and he is the last person I want to be thinking about in relation to Dylan. I am thinking about Jeffrey.
*****
Jeffrey was born in 1960 to my Aunt Joanne and her husband, Ed. He was their second son, and he was seemingly as perfect as his older brother, Jimmy. Joanne and Ed welcomed Jeffrey to their family, as all loving parents do. They took his picture, they took his footprint, they talked about his "strong grip," something people always feel obliged to say about baby boys.
Jeffrey developed normally at first. He started crawling around 9 months and walking at a year, as most babies do. He smiled and smiled, chased after his big brother, and developed his verbal skills at an impressive rate. "I'd never seen a baby with a more cheerful disposition," my grandmother once told me. "He never cried, never threw fits. He just wanted to do everything his big brother did, followed him around like a shadow." Jimmy, jealous at first, eventually couldn't help but be charmed by all of the attention his little brother paid him. Soon they were inseparable.
It wasn't until Jeffrey was 2 years old that Joanne and Ed started to suspect that something might be wrong. More and more, Jeffrey started crawling again. They didn't think much of it at first, as it is common for children to regress, to go through "phases." But it slowly became clear that he wasn't choosing to crawl, he needed to crawl. His legs weren't strong enough to support his body anymore.
They raised their concerns to Jeffrey's pediatrician, who referred them to a specialist. This specialist was, apparently, the best around. "But try not to worry," the doctor told them, "until you hear what she has to say."
Funny, isn't it? How doctors always tell parents not to worry. Like telling the sun not to shine.
So they see the neurologist. She asks Joanne and Ed dozens of questions, performs a full examination on Jeffrey. Blood work. "Come back to see me in a week," she says, "whatever the results, we will discuss them in person."
Joanne and Ed showed up the next week, dressed in their Sunday best. I do this, too: overdress for occasions I am nervous about. I guess I feel like if I look serious, people will take me seriously. Nothing bad can happen to you if you look put-together, if you look like you know what you're doing. I know it doesn't make any sense. I'm sure Joanne and Ed knew it, too.
"I want to be upfront with you about this," the doctor says. "You are not going to like what I have to say, and you will probably not believe me, and you will go looking for a second and third opinion, which of course you are encouraged to do. Your son has a form of muscular dystrophy called Duchenne. It is a genetic, degenerative disease that attacks the body's muscular system. More and more, Jeffrey's muscles will deteriorate, and he will likely be wheelchair-dependent by the age of 10. While there is much research being done, there is no cure for this disease. Children with this illness typically only live to be 12 or 13."
I have thought about this moment so much. How do people absorb news like that? How do you hear, "your baby is going to get sicker and sicker until he dies at age 13" and manage to somehow walk out of that room, get into your car, drive home, eat meals, breathe, live? How do you not just keel over right then and there, a victim of your own pain and heartbreak?
The answer, in the short-term, at least, is denial, because as the first specialist predicted, Joanne and Ed didn't believe her. They took Jeffrey to another specialist for a second opinion, where they had to hear the same tragic news all over again.
My mother always told me that situations like these separate the weak from the strong. The weak? Ed. Months after hearing the devastating news, standing in their kitchen with a suitcase in his hand, he told Joanne that he just couldn't handle it all. It was too much for him to bear. He left Joanne for another woman, a woman who didn't have a child with a terrifying disease. With this new woman, he wouldn't be surrounded, day and night, by the sadness, by the heartache, by the disappointment...by the small, cherub-faced living reminder of just how cruel life can be.
And that was that. Joanne had the picture-perfect life, or so she thought. A loving husband, two beautiful sons. Now this. She had only a high-school education and no skills. "We were told to get married, to be good wives," she once told me. "That was the going advice for women of my generation."
And this is where I swell with a sense of pride, because the strong? The people who stayed behind to take on the burden? All my people. My Aunt Joanne, the devoted mother. My grandparents, who took them all in and helped raise the boys while Joanne worked. My father, their big Uncle Bob, who showed up regularly to play with his nephews and take them on fun outings. These are my people. They take care of their own, no matter how unpleasant. They don't slink away like cowards when the going gets tough; they suck it up and deal with the mess. And they do it because they love each other.
Life went on. Joanne went to work, my grandparents took on the day to day tasks of raising the boys. They took Jeffrey to his many doctor's appointments. There was always some new test, always some new, experimental treatment. He proved to be a very smart boy and did well in school. As increasingly difficult as it was for Jeffrey to keep up with his brother, he never stopped trying. And Joanne made sure that he saw as much of the world as possible; she took the boys on trips all over the continental U.S.: The Grand Canyon, Starved Rock, Niagara Falls, Colorado. Road trips, camping trips, you name it, no matter how difficult Jeffrey's medical care and physical limitations made these excursions. The boys knew laughter, good times, and love. They knew hotel-room pajama parties, rest-stop diners, backseat quarreling, and family camaraderie.
As the years wore on, Jeffrey became increasingly thin and weak, but there were triumphs. Moments where he shocked the family with what he could accomplish. Once, he somehow managed to get out of his wheelchair, get the car keys out of his mother's purse, crawl into the car, start it, and back it right through the garage door. Joanne and my grandmother heard the crash and came running, strained to lift what was left of the garage door out of the way and pulled Jeffrey out of the car. He was completely unharmed.
Most children would receive a stern punishment at this point, but Joanne and Grandma just threw their arms around the boy, jumped up and down and cried tears of joy. "I can't believe it! I can't believe it! How did he get all the way out here by himself? He's going to do it! He's going to prove them all wrong! He's going to beat this thing!!"
He didn't. He died in 1972, just shy of his 13th birthday, surrounded by his loving family. His frail body was buried in a small ivory casket on a warm April afternoon. I don't know many details about the day Jeffrey died, or about the day they buried him. It all happened 3 years before I was born, and I would certainly never ask any of them to relive those details.
I do have memories of visiting the family plot as a child with my father, my aunt Joanne, and my grandmother. We would arrive with flowers and my dad and my aunt would first pull the weeds away from my grandfather's grave, fill the attached vase with water, and arrange the flowers. Then they would turn their attention to Jeffrey's grave, his headstone sadly more sunken and worn than his own grandfather's. Once all of the chores were done, they would all stop and study the graves in silence, just for a moment, before my grandmother would swallow, nod sternly, pat my hand and say "Let's go home." They never cried, not once. That is just their way. But for that one silent moment, there was no hiding their suffering. The pain in their eyes betrayed them.
I wish I knew more about Jeffrey. My grandmother was the only one who would talk about him, and she passed away 15 years ago. No one ever mentions him, out of respect for Joanne, who cannot talk about it. I understand. She amazes me, my aunt Joanne. She amazes everybody. She started out as a secretary and climbed the corporate ladder all the way to the executive level. She is still now, at the age of 75, a striking, impressive woman with a magnetic personality. Her interests are varied; her life is filled with gardening, gourmet cooking, decorating her two homes, art, travel, you name it. I always joke that Martha Stewart is the poor man's Aunt Joanne. Her brilliant blue eyes simply sparkle, and her grace and her smile leave no indication that she has suffered so.
She never remarried. She dated a man named Leonard for years when the boys were little. After Jeffrey died, Leonard asked Joanne to marry him, but she said no. My mother once asked her why, and she simply shrugged and said "because he never asked me when Jeffrey was alive." Ed, the spineless wonder, had some kind of life crisis years ago and has been trying to reconcile with Joanne and Jimmy ever since. Jimmy is resistant but will occasionally let Ed come and visit his grandson. Ed repeatedly invites Joanne out to dinner, presumably so he can grovel and rehash old times. "Listen, Ed, it's not going to happen," Joanne told him. "I forgave you years ago; you need to find a way to forgive yourself." And so he is alone to wrestle with his demons.
I have a box of wooden, painted Christmas ornaments that I put on my tree every year. They are very dear to me because my grandmother and Jeffrey painted them together, he with his wheelchair pulled up to the very breakfast nook where I ate so many meals as a child. Every time I see the ornaments, I think of the love in my grandmother's eyes when she would speak of Jeffrey. I imagine them enjoying a nice afternoon together, maybe with some snow falling outside, maybe some Christmas music playing in the background. And maybe, just for those couple of hours, their knowledge of all of life's cruelties were shoved temporarily under the rug. Maybe they both, without even discussing it, decided to worry about that another day.
*****
Genetic. It was a genetic disorder. Jeffrey was born normal, Jeffrey was smart. Joanne had a picture perfect life, just like yours. These were the thoughts on my mind as I drove Dylan back from the pediatrician that day. These things really happen, and they happen in my family. I don't have the luxury of pretending that terrible things only happen to other people. I know better.
When we get home, I call the neurologist's office. At first they tell me the next available appointment isn't for a month. A month! I beg. Please, something sooner, I can come at any time. She checks again and sees that there is a cancellation and that she can get me into the Lockport office the next morning.
That night was unbearable. I went back and forth between being strong and falling apart. Ian was determined to be strong. "It's going to be ok. I know it is. He's perfect, he's smart, how can there be anything wrong with him? Really, honey. I'm not worried at all." After putting Dylan to bed and not eating our Chinese takeout, we both finally fall asleep on the couch.
I am awoken by a strange sound that I can't identify. Sounds like...gasping? I look to my right and see that Ian is gone. I jump up, alert but confused. Something has happened to him.
The living room, it is coming from the living room. I run, eager to get to him but afraid at the same time. Then I realize. He is crying. Not just crying but really, really sobbing uncontrollably.
I go to him, put my arms around him. "I'm sorry," he gasps. "I'm so sorry, I didn't want to wake you. I so wanted to be strong for you. But I just love him so much. I don't want there to be anything wrong with him. I just love him so much!"
I hold him tight and kiss his head. "It's ok, baby. We're going to get through this. Whatever the doctor says tomorrow, we're going to deal with it together. All of our resources, whatever he needs, we will get it for him. It's going to be okay." This is what couples do for each other; step up, act strong when the other is falling apart. This is the first time I've ever had to do it for Ian, though. He's always the strong one. Seeing him like this brings home the point: This is bad. This is really, really bad.
And as we sit there in the dark, sobbing, rocking back and forth, I think, "How did we get here? Heather and Ian? The young, happy couple, grabbing some cocktails, laughing, making out on the el, making love all day, not a care in the world. How did we get here??"
****
The next day was as glorious as the day before. No humidity, 75 degrees, beautiful fall foliage everywhere. Ian took the morning off work to come see the neurologist with us. We are feeling better than the night before, eager to get to the office and put an end to our agonizing wait. I take a moment to be thankful, again, that we didn't have to endure an agonizing month.
I sit with Dylan in the backseat. He didn't ask me to, I volunteered. "Will there be lollipops at this doctor, Mommy?"
"I don't know, sweetheart. If not, we'll stop on the way home and get you one, OK?"
"Ok! I want a green one!"
"Ok."
"Green is my favorite color!"
"I know, Bub Bub. I know."
"Dinosaurs are green!"
"Yes."
"And grass! And sometimes lollipops!"
As he goes on with his green list, my mind starts to wander. I envision a life of doctor visits, tests, medications, fighting with insurance companies. Keeping careful records, doing careful research. Attending fundraisers, networking with other parents who share our situation. A lifetime of worry, of hope (false hope?), of heartache, of putting on a brave face. Watching my baby suffer. If he has a condition that renders him unable to care for himself, who will take care of him if he outlives us? And how, how, how are we going to manage to cope with this? Emotionally, financially, how, how, how?
The waiting room. There is a girl who is maybe eight years old who will clearly never be able to care for herself. A boy of maybe nine is trying to count the beads on a toy but is getting it all wrong. Dylan walks over and starts to correct him. "Dylan, sweetie," I say as I see the pain in the boy's father's eyes, "Come here and sit with Mommy."
Finally Dylan's name is called and we can wait privately in the exam room. I have held it together until this point, but seeing the kids in the waiting room--Dylan's possible future--has rattled me. I look over Dylan's head and catch Ian's eyes. "I am going to throw up," I whisper weakly.
He sees that I am on the edge. "Honey, don't. Don't get upset until we hear what he has to say."
I close my eyes to try to hold back the tears, but it's too late.
Finally the doctor walks in. He is maybe in his fifties, with thick salt-and-pepper hair and a full beard. He is abrupt, all business. I'm glad. I sense that he will give it to me straight. This is exactly what I need.
"Why are you here today?"
"Our pediatrician sent us because he can't hold his palms up. See?" I show him. He looks down at Dylan's hands and makes a face. Confused? Annoyed? It's hard to tell.
"Ok. Let me ask you some questions first."
And so we go through it all, the story of Dylan's birth, the plummeting heart rate, the emergency c-section. "What was his Apgar score?"
"8-9."
"Did he go home with you?"
"Yes."
"When did he learn to sit up?" And on and on.
Then he asks us to take Dylan's shirt off and sit him on my lap. The doctor hands him a series of little toys and asks Dylan to squeeze them. Dylan is loving it. "Let's do another one!" He keeps saying. I can't help but smile.
"Ok, thank you," the doctor tells Dylan. Then he turns to his chart and makes a series of notes, clicks his pen shut, and turns to face us. I take a breath.
"There is nothing neurologically wrong with him."
The way he said it. Oh God, the lovely way he said it! The annunciation. It was so beautiful, so steadfast...like there were extra periods for emphasis. "There is nothing. Neurologically. Wrong with him." Like there was no doubt in his mind. No doubt in his mind!!!!! I hear myself exhale and feel myself grin. I turn to look at Ian--there are tears in his eyes. When I see them I realize there are tears streaming down my face. Ian manages to speak first. "You're sure?"
"Yes. His muscles are strong." To prove this point, he picks Dylan up by his legs so that Dylan has to walk on his hands. "You see? There is no weakness. He is smart and developing normally."
"But what about his hands?" I ask.
"It is perfectly lateral, the same on both sides," he said. "If it were muscle weakness, it wouldn't be perfectly lateral. This is just the way his bones grew in the womb. The next step for you will be orthopedics."
"What do you think they will do?"
"I don't know. Maybe some kind of bone adjustment surgery. Or maybe, since it hasn't hindered his development, they will do nothing."
Nothing!
We over-thank the doctor and he leaves. Ian and I collapse into each other's arms. Dylan, never one to pass up a hug, climbs onto a chair and throws his arms around us. "Awwww!" he says. "I love you guys!"
We dress Dylan and Ian starts to wipe my tears away. "You need to get it together, honey," he tells me gently. "Not all of the other parents out there in the waiting room have been so lucky."
And that is something we will never forget. The next day, we increased the amount of our monthly donation to United Way, an organization that raises funds for pediatric neurological research and the families affected by these illnesses. These children and their parents will always be in our hearts.
****
With one bullet dodged, we braced ourselves for the pediatric orthopedic specialist.
"Radioulnar synostosis," she tells us. "For most of us, the two bones in our forearm are held together by joints at the elbow and at the wrist. But up by his elbow, Dylan doesn't have a joint, and his bones are fused together. See here?" She points to the x-ray of his little arm. "He doesn't have full extension, either," she says, gently pulling out one of his arms. Sure enough, it doesn't straighten all the way.
"What caused it?" I asked.
She shrugged. "It's an anomaly. Just the way his bones grew in the womb. We simply don't know why."
"Is there treatment?"
"Unfortunately, no," she says. "There is no good surgery for it. We can't create a joint where there isn't one. But the good news," she adds brightly,"Is that it really shouldn't affect him too much. The day-to-day tasks--dressing himself, feeding himself, writing, keyboarding--will be fine. I have patients with this that play sports. It may prevent him from going pro, but how many kids go pro anyway? And he should be able to play an instrument...there may be a couple of instruments that aren't possible, such as the flute and the violin, but there are many others he can choose from."
It's not great news. There are going to be some challenges. Bowling, golfing, baseball (fielding, especially), reaching his hand out to receive treats at school, and later, change from a cashier. He will have to explain to his gym teacher why he can't do pull-ups. Even now, the way he preforms certain tasks is a bit awkward, but he always gets the job done. The doctor reassures us that this is not a health problem, just a bone malformation. Of course, it does hurt to hear that your child is going to have any limitations at all, no matter how slight. But this is a diagnosis we can live with. Our perfect baby boy is going to be OK. His brain is OK. I am walking on air.
Nothing is ever certain. You learn that early on as a parent, even before the baby is born. "Once we get past the first trimester, then I can stop worrying." Then the second trimester arrives, and you think, "Once we get to 20 weeks, then I can stop worrying, because that's when when the baby can possibly survive on its own." "Once he is a year old, b/c then we can stop worrying about SIDS." "Once we pass 3 years, b/c that's when we can stop worrying about autism." Like energy, the worrying never stops, it just changes form. The potential for painful news is always there, lurking around every corner. At any moment, your world can be shattered and you can experience a loss so unimaginable that you can't even allow your brain to go there.
All we can do is enjoy every moment. That morning after the neurologist, I took Dylan to the park. We chased each other, went down the slide, fed some geese. Then we went home and I dragged his art easel outside so he could be free to paint and make a mess while feeling the sun on his skin. Finally, we had our leisurely autumn day.
I will always be haunted but what could have been, but I will never sweat the small stuff again. We are alive. Alive and together.
We have a perfect little boy.
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uppahand's journal
