Is No News Actually Good News?

After four MRIs and seven doctor visits in the past three weeks, there is still no explanation for my son’s vomiting and headaches, which did not start until four months after his brain surgery. Since the vomiting has almost completely subsided and the headaches have decreased in frequency, duration and intensity, the neurosurgeon will not be placing an external drain in his head at this time. Instead, observation at home will continue for three weeks, and he will then return for yet another MRI. At that time, we will discover if excessive brain fluid and pressure are the causes of his malaise.

I guess it could be considered good news that we will not be at the hospital Thanksgiving week like we anticipated, but we will all still be living in uncertainty. It does not matter where we eat our turkey if we are all together and moving towards medical resolution for my son. But for now, we will continue to live in certain uncertainty and take small bites of our yams and bread stuffing with a healthy dose of anxiety.

600 Kisses

Today, I will wake up my six-year-old on his birthday with 600 kisses, just like I should everyday. We will celebrate not just the day of his birth but every day of his life. Just six-months ago, my husband and I did not know if our son would see his sixth birthday. His diagnosis was grim: Rasmussen's Syndrome, a rare neurological that induces seizures that eventually leads to paralysis and mental retardation. The only cure is brain surgery.

In June, he survived an eight-hour brain surgery that turned off half of his brain. Today, his body doesn't work quite the same but his mind is still clever and bright. My boy with half a brain is not only thriving, but he is doing better than many of the whole-brained children in his kindergarten class.

Today, we celebrate the birthday of our amazing boy with a trip to the zoo.

Skin

“Is he right-handed?" The teacher asked the proud parents who are assisting their oldest child with the start of his kindergarten career.

“We don’t know. He uses both hands. So, how should we manage that issue,” said the father.

“You don’t have to do anything,” said the teacher. “The brain is very good at self-management.”

Yes, my son and I have returned to the land of healthy children where parents must invent problems and ask the most insipid questions that make their concerns seem relevant. To avoid shooting looks of contempt at the beautiful smiling couple and their healthy child, I focused on my son who kept his left arm frozen and tight against his chest as he neatly and happily colored despite the paper squirming all over the table. He has no choices when it comes to handedness; his choices were cut away with the scalpel during his brain surgery. I wonder if they can feel my contempt and jealously.

When I looked down at my hands, I saw that I was wearing my mother’s skin. Skin that was worn, beaten and broken open. Her long battle, her many years of fighting for a special needs child turned her optimism into bitterness and her love into scorn. She grew to loathe and detest everyone who was typically developed even her own normally developed children. She could never see past the unfairness and cruelty that made her daughter’s life hard. My sister forgave those who teased and taunted her; found unconditional love, and made a life of her own while our mother remained angry at a cruel and unjust universe.

“I love kindergarten,” my son said.

I leaned over to give him a kiss on the cheek and to touch his shoulder. My skin returned.

The Hug

Today, I hugged that man who rescued my son when God failed my family. While others prayed to a deity who allowed my child to be afflicted by continual seizures that ravaged the left side of his body, only one man laid hands and a scalpel on my child to end the seizures. The hand of God did not make an appearance and my son’s seemingly miraculous medical turnaround is not a miracle. It is the result of phenomenal technology, innovative medical research and the craftsmanship of one extraordinary surgeon. For months, my faith has been in doubt. My doubts have now vanished and I am once again a believer – a believer in science.

Not An Ordinary Spa

Succulent salmon with fresh lemon wedges, lightly seasoned rice pilaf, a baked sweet potato with butter and brown sugar. Chocolate cake for dessert and a mixed fruit smoothie as a beverage for me. For my son, veggie quesadillas with sour cream and mild picante sauce, French fries and carrots with a brownie and a root beer float – all delivered by room service. A delicious meal prior to our trip the luxurious game room complete with X-Box, Wii, air hockey, loads of toys ranging from cars to dolls to Legos to Lincoln Logs to plastic dinosaurs. One cabinet full of games—Rummikub, Guess Who?, Uno, Monopoly, Memory, Connect Four —another cabinet loaded with arts and crafts—ceramics, foam project kits, beads, sequins, wiggly eyes, yarn, thread, acrylics, water colors, pastels, markers, crayons, colored pencils. My son paints ceramics while I pretend to be Lee Krasner on a small canvas beside him. While our works of art dry, we play air hockey. The boy wins four to one over his mother three times. We grab some Skip-O, Hit the Deck and Spiderman Uno and return to our room, where we order some snacks on demand. Our specially designated dietitian helps us pick out a few items to put some weight on my thirty-three pound five-year-old, who weighs less than his two-year-old brother. An Apple pie, blueberry muffins, mozzarella cheese sticks, Breeze juice boxes that contain extra protein, and a few fruit roll-ups are delivered to our room just in time for an impassioned game of Spiderman Uno on our red floor mat in our private room. The boy continues his winning streak until bedtime and climbs into his adjustable bed that is almost as fun as a roller coaster. He falls into a deep slumber with no shaking or trembling. His morning begins with cartoons and French Toast in the multi-purpose room with the other five-year-olds on the floor. The kids who are able to talk make jokes as they get ready for another day of working out with their personal trainers and masseuses. My son plays volleyball and soccer with his trainers until he is exhausted and ready for a nap. An afternoon snooze is always a perk until scrub- wearing staff wakes him for a procedure or two. They perform the tasks quickly, and he gets to dip into the Toy Treasure Chest filled with stuffed animals, Styrofoam footballs, Hot Wheels, and multi-packs of Play Doh – this isn’t your typical plastic toy filled junk drawer found at local dentist offices and public libraries. The boy tends to pick cars but also grabs a few Beanie Babies for his little brother, a stuff animal connoisseur. When all his workouts and procedures are done for the day, we visit the wagon corral—a vast sea filled with a plethora of Red Radio Flyer wagons. We grab a wagon and leave for a stroll around the grounds, stopping for a dinner picnic on the lawn and an impromptu mother-son soccer game. After our scenic saunter, we visit the on-site family library and grab a few Dr. Seuss books and a healthy supply of Laura Numeroff and Todd Parr. We also pick up some movies and X-Box games, and make a quick stop at the gift shop for candy bars and flamboyant furry slippers. Red slippers for the boy that look like Elmo is dancing on his feet and bright rainbow strips for his mother that remind me of sherbet that has been in the freezer so long that it collects fur. On our return trip to the sixth floor, we ride the elevator with some of the guests from the seventh floor. My son smiles and talks to them. I keep my eyes averted to try not to see their bald heads, sterile face masks, isolation gowns and IV cords. Shameful, I confess. Too much to swallow, knowing that some those sweet baby faces will never step off the elevator, walk out of the building and get into their parents cars for good like my son will, despite his left-side weakness and vision deficit. When the arrival bell dings, we exit and veer left to retrieve our clean clothes from the laundry room. We return to our suite to begin our evening routine all over again. Occasionally, we are bothered by concierges with the fancy title of Child Life Specialists, who give us brochures on swimming, horseback riding, basketball, dancing, pottery, fly fishing and piano lessons. The pamphlets have lush pictures with smiling children galloping through fields and striving for Carnegie Hall. The fine print on the bottom of the dark green brochure reads: “Activities for children with disabilities.” We ignore the fine print like we do on every other document and plan a summer filled with horseback riding and swimming. We also discuss his eventual return to the soccer field. In the midst of our scheduling, a lady dressed in pink Minnie Mouse scrubs interrupts us with some important news. “You are going home tomorrow.” My son and I look at her with surprise. They are throwing us back to our regular life three weeks early. We are joyful that we will be reunited with our four other family members, but we are sad that our wonderful mother-son vacation has come to an end. The next day, we fill the red wagon with our suitcases, 13 stuff animals, 11 Hot Wheels, a bag full of new toys, and enough Mylar balloons that my son could be Fort Collins’ next balloon boy (minus the freakish father). I load the car with my child and our belongings. I make adjustments to the balloons, clear my rear-view mirror, and start rolling out of the parking garage, looking forward to the road ahead.

Exceeding Expectations

The doctors said he would be in Pediatric Intensive Care Unit for four to six days after his brain surgery. He was there for a day. They said he would be paralyzed on his left side for a month. He was walking after six days. They said his hand would be nothing more than an inactive helper hand (a.k.a. paper weight extremity). He picks up objects and stretches his fingers. They said he would be seizure free. He is seizure free!

Time to Wash the Clothes

"I don't what I would do without laundry facilities here," said the woman, holding a clear trash bag of little boy clothes. "My son pulled out his feeding tube three times today."

"I hear ya. My son just threw up on his blanket and his friends," I said. Normally, I shy away from or dry heave during any mention of vomit. But, puke stories seemed to be part of my initiation. No sorority sisters in sight, just a group of moms with brain damaged children.

As I lifted the washing machine lid and threw in Foxy Fox and Red Panda, I asked the woman if she needed a dryer sheet. She replied: "No thanks. I just never expected to be here. We are now on day 26."

"Really?"

"I was just playing in the park with my five-year-old and a three-hundred pound concrete statue fell on him. He had a severe, blunt traumatic brain injury. He has a metal plate in his head, cannot talk, eat or swallow. We will be here most of the summer."

Before I had a chance to reply, Erica, who is two doors down from us on the hall, came back to get a blanket that she washed for her fifteen-year-old son, who has had seizures since he was three. They drove from Montana to have her son's head cut open by one of the best pediatric surgeons in the country.  A section of his skull was removed and 236 electrical wires were placed directly onto his brain to map seizure activity and determine an exact location for brain matter removal. Two weeks later, he still hasn't had a seizure.

"I folded it for you," I said.

"Thanks. See you at breakfast in the morning," she said.

She left and the buzzer went off. Time to move the fury friends from the washer to the dryer. No time to fuss and dwell on what has been lost when there is so much laundry to do.

Sleep

Doctor Dog sleeps upside down with his puffy black nose pressed under a velvety monkey blanket and his left paw against the boy’s left leg. The boy, who is in the soccer pajamas, can barely be seen underneath Little Monkey, Big Monkey, Matt the Jaguar, and Gar Gar the Leopard and his new red panda with a raccoon tail that has yet to be named. Beneath the plush zoo rests an intricate jig-jaw puzzle of flesh and bone pieced together with zigzag stitches, tinged in young blood. From below his earlobe around to the back of his head, straight up to the tip of his forehead, until a lightning bolt accents his purplish-bluish-greenish skin. He is not Harry Potter. His story is real. A story that will grow as he grows. Motorcycle accident? Knife fight? Thrown from horse? Trampled by soccer cleats? As many possibilities, as there are stitches. The stories will be sewn and woven in time, but for now, he sleeps. No shakes, seizures, twitches, trembles, shudders, shivers, quivers or quavers. A body at peace, at last.

Payment Is Expected at the Time of Service

“It is a cure with a cost,” said the doctor.”

“I am not very fond of my son’s left hand being the payment. Think of another form of less precious tender and get back to me,” said the mother.

An Extremity to Spare

Making breakfast with only one hand is slow and messy; waffles veer to the right while being slathered in cream cheese and jelly. Pulling up underwear and jeans is possible. Buttons require patient maneuvering . It only takes one extremity to brush hair and teeth. Typing is a breeze, and so is doing laundry if imprecise folding is allowed.

Life with one hand is difficult, but it is doable. I am ready. Trust me when I say, someone as lazy as me doesn’t need two hands. Whether I use one hand, two hands or both my feet to clean my house, the results are the same. If you take a close look at my hair and make-up, you would think both of my hands were removed years ago. Plus, I could be a perfectly functioning, delightful one-handed librarian; I don’t need two hands to wake up homeless people, give pre-pubescent boys The Diary of a Wimpy Kid, or help patrons with their Facebook accounts. If anyone ever had an extremity spare, it is me.

So, here I am and ready to offer my left hand. Take mine and spare my son’s, please.

Hope

Author’s Note: I am still struggling with how to get accurate information to our friends as well as chronicling how we are coping with our son’s diagnosis without revealing too much personal information about our son and family. It seems incongruous to place true accounts on such a grave matter amongst excessive Prince posts and low-brow humor. But for now, allowing my blog to mirror the sprawling, anxiety-filled state of my mind seems organic.

A good feature news story captures the imagination with interesting information and pulls at your heart strings. This is exactly what a recent story about a little girl who traveled from North Carolina to Johns Hopkins Hospital in Baltimore, Maryland to have half of her brain removed to stop debilitating seizures, restore her cognitive abilities and, ultimately, to save her life. With half of a brain, she is a happy and functional child, which is an inspiring story of overcoming adversity.

But for our family, Cameron Mott’s journey is more than a feel-good story to watch on a morning show while drinking coffee and getting the kids ready for school. We discovered this story about six days after receiving the news that our five-year-old son has Rasmussen’s Syndrome, a devastating disease that causes destruction to one side of the brain, single-side paralysis, and mental retardation if the condition is allowed to progress. The only cure is a life-altering brain surgery known as a hemispherectomy, where one side of the brain is either removed or turned off.

Brain surgery followed by intensive physical therapy will most likely occur in a few weeks for my son. Albeit terrifying, we accepted the surgery as a positive that will prevent us from losing our son to mental retardation. During this arduous time for our family, seeing Cameron Mott’s story gave us hope when we didn’t think there was any to be found.

Here is the link:

http://today.msnbc.msn.com/id/36032653/ns/today-today_health/

A Radical Proposition

Author's Note: This piece is not written in the voice of Garbageman's Daughter but instead the real voice of a worried mother, and the content here is not exaggerated as in most of my other entries.

My son has 20 seizures a day. He has bruises all over his face from all of the falls, and he is losing the use of the left side of his body. He must wear a helmet when we leave the house. This once soccer star and pre-school switch hitter with extraordinary speed and overall athletic ability has been reduced to being a sit-all-day, movie watching, video game playing kid.

We thought he would be diagnosed with Epilepsy, take some medicine for a few years and eventually out grow the seizures. This is not the case. My five-year-old has Rasmussen’s Syndrome, which is a rare progressive neurologic disorder that causes deterioration of one side of the brain, single-side paralysis and eventual mental retardation.

Fortunately, there is a now radical procedure called a hemispherectomy that stops the seizures forever, prevents mental retardation and eliminates most of the paralysis. This surgery involves removing half of the brain. In my son’s case, the right side of his brain will be turned off but not actually detached and taken out of the body as previously done with early occurrences of the surgery.

Wow, my son is going to have half of a brain. I think I am still in shock. Four weeks ago, he was a perfectly happy five-year-old, and then he just started falling down for no reason. This syndrome has aggressively and swiftly attacked his body without giving him much of an opportunity to fight back—no recourse but to have half of his brain turned off.

The good news is the brain is phenomenally adaptable and will rewire itself. Most of the functions once performed by the right brain will be taken over by the left side. He will not lose any cognitive ability. He’ll be able walk and even run (with a slight limp) and use his left hand a little (although fine motor skills in that hand will elude him). But, lots of people live limited use in one hand and this is a small price to pay to not lose our child to mental retardation or something worse.

Our third child will have more challenges in his life than his three siblings, and it seems so unfair. But since he is so young, he will have no memory of ever climbing play equipment with both hands or swinging a baseball from both sides. Fortunately, time will make him forget the anger and pain he feels when we tell him that he cannot play soccer or baseball. These losses will just make him find new ways to express himself. He will not lose his creativity and his sharp-wit. And some day, this grandson of a garbageman could even have his own blog to write highly inappropriate jokes about having half of a brain. He will be okay…someday.

Don’t Ask Me….You Don’t Want To Know

You say: “How are you?”

I say: “Fine. Thank you.”

But, I am not fine.

I am angry. I am scared. I am sad. I hate God if I even believe there is a God. I am jealous of your healthy children. I want to cry so hard that I’ll cleanse myself from the inside out. I am exhausted. I am tired of putting a positive spin on the fact my kid is sick. That is how I am.

Glad you asked?

Just Another Day in the Children's Ward

X-Box, movies, cartoons, Gameboy, coloring books, ceramics, Webkinz on mom’s laptop, many stuffed animals, and root beer floats for lunch while hanging out in an adjustable bed.  The scene looks like something out of Home Alone 2.  The starring role belongs to a handsome five-year-old brunette who rivals, if not surpasses, Macaulay Culkin in both cuteness and charm.

But, he is not in a hotel gorging on candy. He isn’t on vacation although he does enjoy all the gifts and junk food that must not be shared with his two brothers and sister.  His holiday fails to be restful and pleasurable as poking and prodding continually interrupts his Phineas and Ferb marathon. Electrical wires on his head to monitor the activity of his brain are only a minor nuisance for a Super Mario Brothers champion.

No amount of needles and medical devices can slow down a practical joker. Physical limitations only make the mind sharper, meaner and more imaginative. He soon discovers there are no shortage of ways to mess with nurses and doctors like moving the bed up and down during examinations, sticking out his tongue, or doing the standard same answer to everything trick. “Does it hurt?” Yes. “Does it not hurt?” Yes.    

His standard answer is easily dismissed as him not understanding the questions and prompts little response from his caregivers.  So, he tweaks his answers. “How are you feeling?” Poo-poo. “Can I examine you?” Poo-poo.  “Where did you get those dimples?”  In your butt.

One could call him a hostile patient or just an inconvenienced five-year-old who really doesn’t have time in his busy schedule of coloring, Gameboy playing and mischief making to be interrupted. Other than the annoyance of a weak left hand and a partial seizure here and there that sometimes makes him fall or causes his leg or arm to shake for a few seconds, he goes about his life and resumes his activities whether he is playing Wii or Kung-Fu fighting with his younger brother. He fails to know that his trip to the hospital has forever changed his paradigm of normal. X-Box, movies, cartoons, Gameboy, coloring books, ceramics, Webkinz on mom’s laptop will never be quite the same.