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.

Position and Perspective

Opinions on healthcare are proportionally related to the health and well-being of the person forming the opinion. The physically and financially healthy conservative middle class can afford to complain about the burden of healthcare on their wallets after they come home from their staple high paying jobs complete with 401Ks and Cadillac insurance plans and tuck their healthy children in nice warm beds, draped in comforters from Kids Pottery Barn.

So, what happens when they lose their jobs along with their insurance, and someone in the family gets cancer or needs heart surgery? Bet, then, they’ll be thankful for ObamaCare.

Perhaps the fiscal conservatives should drink a few less Starbuck cappuccinos, run around the block instead of going to Bally Total Fitness to see the hotties, and reduce their contributions to Focus on the Family and the Christian Coalition. With those reductions in spending, they won’t even notice a small increase in their taxes to benefit humankind, which should appeal to all those good Christians out there if they are not too busy making posters to save unborn children opposed to helping kids who are already here and are in need.

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. 

A Child's View of Healthcare

No matter what questions the nurses and doctors ask, the child responds: “Poo. Poo.”

He then tells his parents: “You can’t give a kid in the hospital a spanking or time-out.

A Spoon Full Medicine for the Politicians and Pundits to Choke On

I am not a political blogger.

I am not a Democrat and certainly am not a Republican.

I don’t understand the business of medicine and the politics of medicine confound me much more. Why is life and death even up for debate? I don’t the answer.

I am just a mom. A mom with a sick kid.

My child should not be politicized, and his health certainly isn’t fodder for debate.

Please do not treat my child’s life like a commodity.

He is more than your bottom line.