Tell Me You're Kidding
By Prajna
The following prologue is an introduction to a book soon to be published. It is about a mom, love and life with her three daughters, two with special needs, and their journey together. The stories take place ten years after my initial spiritual awakening and are filled with universal heart opening themes laced with humor, tragedy, sweat, tears and a wisdom that delivers us to the space of true surrender, eternal peace and cosmic humor. You are welcome to respond with your interest in reading the entire book! Thank you, Prajna
Prologue
It’s late spring of 2004, and we are driving in our family Toyota van along the rolling hills of Montgomery County, Pennsylvania, lush green foliage surrounding us in the cool damp air, the sky a hazy blue. Nine-year old Autumn sits next to me in the front seat, her hands busy crocheting a green and yellow book bag, her eyes peeled, ready to spot the bold red heart on the Variety Camp sign, a charity-funded camp for children with special needs and medical conditions. I peek in the mirror and check on my twin daughters, Abby and Libby, who, if all goes well, will soon be spending ten days at the overnight camp at no cost to our family.
Imagine that. Ten days.
We’re not even there yet and already I am lost in a magical daydream—ten days free from Abby and Libby’s demanding therapeutic routines. Ten glorious days for me and Autumn, my one daughter whose only special need at the moment is to spend some alone time with her mother.
* * *
Libby is known in the medical world as having quadriplegia, a type of spasticity (cerebral palsy) that affects all of her limbs and every area of bodily function. She wears diapers. Pureed meals are fed to her five times a day by spoon and liquids are given through a gastro-intestinal tube.
Abby also has cerebral palsy, but to a lesser degree. Every area of her physical being is affected and she has developmental delays, primarily on the right side of her body. But she does not wear diapers, usually making it to the toilet on time. And she can feed herself, managing to get food at least near the vicinity of her mouth. Libby’s light reflex is weak; she sees no more than shadows. Abby can see can high contrasts and letters that are at least Font 36. For all intents and purposes, both girls are legally blind.
There is an ancient spiritual idiom that Christ taught: You need to lose yourself to find yourself. It is in losing our attachment to form (perceptions) that we find who we truly are, our formless essence. We become less, so we can become more. As Abby and Libby see less, they’ve taught me to see more.
There have been moments, flashes shorter than the time it takes a lightning bug to glow, when Libby has looked—yes, looked—deep into my eyes. And in those brief snaps I’ve been able to see a place, an exquisite peaceful place that I am pulled toward deep inside myself, while simultaneously I am removed from my self, my ego, and am able to perceive that vast mystery that we call “truth.”
I’d known the moments of stillness before, beginning at age of ten when my Godmother died and I was opened to life beyond form. I knew in my heart of hearts that something continued when her physical body died. I’ve not forgotten that subtle yet profound moment of stillness; indeed, it fueled what was to begin a life-long insatiable search for wisdom. Even when I was ten, I knew I had to uncover what lives beyond the veil of appearances. I would look into the mirror and wonder, “What is the light that shines through these eyes? Does it continue when the body dies? What is the source of love and life?”
For three decades, I’ve searched for deeper knowledge and wisdom, taking both traditional eastern and western paths. But it has been my children who have taught me what years of acquiring spiritual knowledge and practice did not. They took me off the conventional path of fulfillment to a place where the spiritual rubber meets the road—and handed me the one challenge that demolished the concepts of spiritual and profane to the direct perception of oneness. I have come to discover the divine essence with babies nursing on my lap, while changing their diapers, at the hospital or crying through the night. My girls have brought me down to ground zero where everything is the same, where everything is the infinite mystery; there is no separation. Through them I’ve come to accept life as it is—beyond appearances—beyond understanding—beyond anything I could ever imagine.
Since the birth of Abby and Libby, it is as if my eyes had a partial selective view of life. My entire being has been opened to a vertical reality with a 360-degree lens that is unable to close off. As a veteran spiritual seeker I believed that God, spirit, essence, could only be found in holy places like ashrams, temples, churches, mountaintops or remote caves in India, or by studying with priests, Rishis, and any number of profoundly wise humans. Abby and Libby’s precarious birth opened the gate to a tumultuous course in humility for me. In turn, their special challenges have become an antidote, a relentless balm for removing any remaining scales to the perception of God as something “other” or outside of our daily reach. As my eyes open, the ancient wisdom of one universal heart available right here, right now is blooming.
* * *
I have the squirrelly habit of driving with the rear view mirror positioned directly into the back seat. I need to know the moment Libby’s head tips and cuts off the flow of oxygen to her mouth. Libby is a mouth breather and always sits diagonally behind me. No matter how many straps, cushions or clothes I roll to prop her head up, she manages to slip her mouth beneath her neck harness, barely able to breathe. At any time I may have to pull over, unbuckle, swing my body right and free her air passage. As soon as we enter a busy highway, I up the risk of driving alone with my three girls. Which risk would I take? Tell Autumn to unbuckle and climb into the back to help Libby before she turned blue? Trust Abby to push her sister’s head up, not down; or skid across the highway at 70 miles an hour to pull over?
I face choices like this on a daily basis, one choice always compromising another. One of the most important choices I’ve made is that I don’t give my daughters prescription drugs. Instead, I nurture their growth—brains and bodies both—using a special food diet, along with supplements and alternative therapies. For sure, this practice has caused many a western medical physician to raise an eyebrow and has made us all slaves to strict and structured routines, but it’s also freed me from the hassle of repeat doctor visits for refilling prescriptions, or having to trace down the possible causes of sudden side effects of excessive anxiety, crankiness, rashes, reflux, loss of functions and any number of unexplained behaviors, illnesses or seizure activity. I’m always relieved when I can skip over school or camp registration forms that ask me to list current medications, dosage, frequency, prescribing physician, and any adverse reactions. I relish the ease of writing N/A: NOT APPLICABLE.
And I relish knowing my daughters are not drugged.
* * *
Behind me, Abby—who has a sophisticated ear for song and story—is leaning out through her booster seat straps into Libby and loudly mimicking an episode from “The Berenstain Bears.” Even though she can’t track words visually, she replicates story lines of whatever she and her sisters are experiencing at the time. Today the theme is camp.
“Little sister went into the shallow end of the swimming pool with her new pink polka dot bathing suit on,’ said brother,” Abby declares. Libby hasn’t uttered a single audible word in the English language. She has a language of her own, enunciating consonants like ga, ka, hun; or vowels like eeeh, aaah connecting with her world through simple expressions. She pays rapt attention when her name is spoken; smiles or kicks in agreement; seals her lips to say “no” or “I’m all done,” and intones a variety of sounds for help, comfort, attention, hunger or just to amuse us. What Libby is not able to express with words, Abby makes up for in imagination, chic details and elaborate babble. Twins through and through.
“I see it, there’s the red heart!” exclaims my co-pilot Autumn. We’re here. “Good eye,” I say as I slowly turn into the long stone driveway. Even though the parking lot is empty except for a blue Ford wagon and a yellow beetle bug, it’s nice to know that wherever we go there is the exclusive privilege of a parking spot. I pull up to the politically incorrect “handicap parking only” rectangular sign and park between the designated blue lines, turn off the engine and place our shiny blue placard in the window.
“Can I push Libby’s chair? I want to push Libby,” bursts Abby. Abby doesn’t walk well. She is on constant alert for an opportunity to push her sister. Holding onto Libby’s chair gives her a little more stability and also the powerful feeling that comes with helping her twin sister. Libby squirms about in her chair aware that we have arrived, squealing and kicking to let us know she will not wait in the car nor be left out.
Autumn helps Abby out through the sliding side door while I lift Libby’s wheelchair out of the back of the van. Like an excited shaggy Labrador, Abby wags her way over to Libby’s chair, clumsily latches on ready to romp with no intention of letting go. Autumn coaches her to settle down. “You have to wait for Mom to get Libby,” she says with just a note a impatience in her voice. I know that she, like me, cannot wait to get the twins settled in so the two of us older girls can go on our adventure.
Abby slides her tongue back into her mouth still bouncing with anticipation. I undo Libby’s four straps and buckles. She immediately kicks herself up into my arms, bangs her head into my forehead, belting out an ear splitting squeal. I shake myself, pry Libby’s stiff legs open to straddle her 36 pounds of dense weight onto my broad left hip, and waddle over to her chair. “Autumn, is the brake on?” Autumn steps on the red lever that insures Libby’s chair will not budge. I shimmy her into her cushioned seat, slide her pelvis to the back of the seat, flip the black bolster between her tight knees, pull the harness over her torso, position her head on the neck cradle, lower her forehead strap, and pull tight the torso and waist belts. I decide not to strap her feet into the stirrups. She is rhythmically kicking to the tune of Abby’s exhilarated bouncing. Autumn instinctively wipes the dripping drool off my right arm as she hands me a fresh bib to lace around Libby’s front. My burgundy cotton t-shirt is wet with slobber.
I don’t care. I am fantasying about the unscheduled sunny days ahead—driving in a convertible along the northern coast of California—hair flying in the warm sea breeze and wearing my clean, un-drooled upon, spit-up free, dry coral blue summer dress that is tucked away in the back of my closet. Uncomplaining, Autumn is sitting beside me in denim shorts, yellow spaghetti-strapped top, sunglasses, and her sunhat, relishing her mother’s attention. Together we are singing her favorite songs from third grade, telling each other stories, solving riddles, drinking ice cold lemonade without a care in the world.
Together, the four of us roll with Libby’s chair toward the Director’s office, Abby pushing Libby’s chair with determination. Autumn walks to the left of the chair secretly steering Libby over sidewalk cracks, bumps and around corners. I‘m at the right supporting Libby’s head with my right hand, my left hand braced to grab the chair and smiling at Autumn’s finesse as she gingerly misses every puddle and manages the pace of our course.
We are warmly greeted by Jennifer, the acting assistant to the director. She’s a slight athletic woman in her mid to late twenties and has on navy blue sweat pants and a white Variety Camp t-shirt with a bright red heart. She is standing in front of a sign that reads VARIETY CAMP HAS BEEN SERVING MEDICALLY FRAGILE AND DISABLED CHILDREN SINCE 1949. After she introduces herself and gets a rambunctious introduction from Abby and Libby in return, Autumn coyly offers a hello. Jennifer asks if we need anything before our tour of the camp. Since I never know how long a jovial mood will last I say quickly, “No, let’s go.”
Jennifer does most of the talking as we stroll past the mess hall and kitchen. Autumn and I are focused on keeping both Abby and Libby’s chair out of the mud. Jennifer tells us that the camp expects to have 70 children this summer spread out in 22 rustic cabins-- each with an accessible toilet and shower!—nestled together in perfect rows that square an outdoor swimming pool. We learn about the camp’s philosophy to provide a fun, safe recreational experience designed to foster greater independence and to provide an opportunity to participate in adaptive, age-appropriate peer-group educational programs. A hint of relief stirs in my heart because I want to believe that Libby can participate in camp regardless of her limited abilities.
We enter a colorful arts and crafts center, where Abby shouts, “I love to paint!” “So does Libby,” adds Autumn. Do I mention that Libby paints with her right foot? This past year she learned to hold a fat paintbrush between her big and second toe.
We choose not to tour the greenhouse, nature trails, or the outdoor amphitheater as it was off-season and the mud was thick. The building that amazes us the most is the state of the arts Olympic-size indoor warm water swimming pool. As we approach the water Libby’s uncanny ability to smell chlorine automatically causes her to kick and squeal, which in turn ignites Abby. I have to physically stop her from catapulting us into the deep end.
The last building Jennifer points out is the fully-equipped medical building where the children receive their routine medications either once, twice or three times a day. I take a deep breath and mention that Abby and Libby do not need medications. “Oh really?” she asks. “You don’t give them medication for their cerebral palsy? All of our campers have at least one medication. How is this possible? Isn’t that unsafe?”
And the dance begins anew. “No,” I reply. “Actually I'm totally relieved not to deal with the side effects of medications. Libby is much more alert, happy, able to eat pureed foods and she almost sleeps through the night because neurologically she is more organized.” I go on to explain how since taking them off medications, Abby is a different child ten times over. The dark color of her skin cleared up, she doesn’t have temper tantrums, she can follow 5-step instructions, rarely stimulates herself with continuous lip flipping anymore, and her functioning has increased in every area.
“Really. How strange, I’ve never heard of this. What do you do?”
She, like so many other people—from other parents with special-needs children to diploma-flooded medical professionals—is incredulous. It’s been seven years since I delivered Abby and Libby through emergency C-section. Seven years of explaining my choices over and over again, every time there is a transition to a new nurse, caregiver, helper in the home, school, camp, therapist, or specialist. I am worn by the constant reminder that the route I’ve chosen for my children is “outside” the norm. I am tired of always looking for that one special school that will support me in my choices and sustain Abby and Libby’s progress.
I could shut my eyes and vow not to begin again, but we are here at this wondrous camp and it is an extremely beautiful day.
“Jennifer,” I begin, “we’ve tried so many approaches over the past seven years. We’re lucky to be from Santa Cruz, California, where there are lots of great health options. We collaborated with a Neurological Acupuncturist, Osteopath and Cranial Sacral Therapist. They’ve all shown us that we don’t need medications.”
“Tell her about the hyperbaric oxygen chamber and Carol and Mathew,” boasts Abby.
“Oh yeah. Here in Pennsylvania we found The Family Hope Center where Carol and Mathew have helped us so much with treating the brain injury directly rather than the symptoms with organized movement, hyperbaric oxygen, and sensory integration. Abby is walking and seeing. Libby eats and sees much better. Every part of their functioning is better.”
“Really?”
“Really. They tested my girls for allergies and researched all of the best foods to support their growing brains and bodies like lean proteins, essential fats like omega 3 fish oils and cod liver oil.”
“Cod liver oil! These little girls take cod liver oil?”
I smile because even the thought of fish oil, growing in popularity among adults, raises doubts. “It doesn’t taste bad. I take it too. We buy the lemon or strawberry flavor.”
Jennifer fiddles at the string on her sweatpants and crinkles up her small nose. “Don’t children just want to eat peanut butter and jelly sandwiches, macaroni and cheese, pretzels or ice cream?”
Can I bang her head against the side of that cabin or would that be too mean? “Of course they’ll eat that food if it’s all we offer them. They don’t know any better. But believe me, and I speak from experience”—oh, yes, do I ever—“children love nutritious food, and they feel more alive when they eat well. And drink well. Don’t forget about lots of water.”
“Now water, I can handle. I’m always drinking water.” I strike a nerve. A small one, but it’s a start.
“Me too,” says Autumn.
“Me too,” says Abby.
“A Whole Foods opened up a couple of blocks from where I live. I’ve only been there once but I loved trying all the different food samples. I could really taste the difference in the organic fruit.”
“We have Kimberton Whole Foods market close to our home too,” Autumn says proudly, as if she were telling Jennifer about her swimming medals.
“And you think eating organic food makes a huge difference.”
“We used to all get sinus infections but we stopped getting them since we eliminated dairy and wheat. Abby and Libby have longer attention spans and more energy to work on functional skills.” I could have gone on for another ten minutes but time was precious today. “And no one in our family caught the terrible flu that hit so many people this past winter.”
Jennifer seems to be listening. “That’s amazing! I try to run everyday. I’m in training for my first marathon. I had that terrible bug for six weeks, which totally killed my chances to keep up with my training goals.”
“I want to run!” interjects Abby. She wants us to get us back on track.
“You will run,” say Autumn and I at the same time.
“Summer is next week and I’m just getting my strength back. Damn, maybe I need to look at my diet. It’s no fun getting sick,” continues Jennifer.
Abby and Libby never miss the slightest swear word and start giggling hysterically. Abby’s dead weight flops over my lap. I ignore the fresh puddle of pee beneath her feet. Jennifer catches Libby’s contagious snorts, and Autumn breaks out into a full comedy routine. She snags an orange cone shaped cylinder up off the floor puts it to her mouth like a microphone. Marching in place she announces, “Attention campers, please return to your bunk house. It’s time to sing songs.”
Hearing this familiar voice Libby becomes still. Abby is mesmerized. I am torn between cleaning up the mess and relaxing back into my chair to enjoy the light moment.
Autumn starts to sing. “I know a girl her name is Libby, hey-la-de-la-de-do, when she eats food, it falls on her bibby. Hey la-de-la-de-do.” As soon as I join in, Abby busts in with high-pitched volume. “Sing about me, sing about me!”
Jennifer starts to wheel Libby around in a circle. Abby yells, “Me too, me too!”
Abby’s squeezes my left hand with her right indicating she wants to jump. I grit my teeth amazed at the strength of her tone. I gently pry her hand open, gather her and her backpack and make a dash to the restroom.
When we return. Abby tells Jennifer, “I can walk by myself. Watch me.”
Abby makes her best effort to stride across the room unassisted. Her right arm bent at the elbow and fixed at the chest, right heel almost touching the floor. We all clap.
Autumn and I exchange glances. We both know this is going to be a great place for the twins. Now just one more hurdle: “Jennifer,” I say, “can I have a sample of the daily menu? I want to plan in advance what I need to pack for camp.”
“Sure. Our cook Lucy isn’t in. She won’t mind if I make a photocopy so you can take it with you.”
As soon as Jennifer leaves the office Autumn runs over to my left side and whispers in my ear. “Mom, she’s really nice. Abby and Libby are going to like it here.”
I breathe a deep smile and whisper back, “Autumn, I think you’re right. This is going to be a very good summer camp for your sisters. You and I will have a special vacation together.”
Autumn dances off singing, “Black socks they never get dirty, the longer you wear them the blacker they get.”
Jennifer strides in and hands me two weeks of planned menus. Abby immediately grabs the papers, pulls them an inch from her eyes shouting, “I can read it!”
Feeling right at home Autumn asks, “Do you use organic ingredients?”
I know from our conversation just now that there is no way organic ingredients make it into the cafeteria here, but I will not let that stop us.
Jennifer echoes my thoughts. “I’m sure we don’t but your Mom can pack organic food for your sisters.”
Autumn skips away in a big circle arms stretched out like a big winged bird.
Jennifer catches her on the rebound holds up both hands with finger and thumbs forming a big O. Abby and Libby’s first camp experience is going to be A-OK.
“Mrs. Ginty, please take the menus home, supplement where you need to and let me know if you need anything else.”
Deeply encouraged by this meeting, I realize suddenly that my body has fallen half asleep in the chair. I don’t want to get up. “This is too good to be true,” I tell Jennifer.
I like her. And I like her reassurance about our choices. We leave the camp knowing that Libby and Abby will be able to participate in every aspect of camp without restraint because of their medical conditions or nutritional supplements. Autumn and I will soon be on an airplane to our previous home in California.
* * *
At home I chuckle as I read over the menu. Jennifer was right: the typical childhood fare of hotdogs, pizza and macaroni and cheese in a variety of forms. Where are the fruits and vegetables? This is going to be a huge packing job.
It is almost 11 pm by the time I finish reading to Abby and Libby for a second time. Now all three girls are fast asleep. I turn on the tea pot, sit down to prepare a shopping list and organize the intricate details of their specific diet. I need to order more magnesium and calcium citrate overnight express. We’re low on elderberry syrup. I knocked over Abby’s digestive enzymes into the sink late last night while scrubbing out that nasty pot. Burnt encrusted oatmeal. Ten boxes, one for each day with instructions for each meal. I’ll type up each step and tape their menu to the outside of each little box. I can cook their meals in advance, puree Libby’s, store them in glass jars, and freeze them until camp begins. I’ll measure out the morning and evening capsules into a sandwich baggies. The oils will need to be refrigerated. I’ll use sticky notes for that. I’ll open Libby’s capsules in advance, store them in a tiny Tupperware, label “just dissolve with water and plunge through her GI tube.” Forget the sage oil rubs, skin brushing, and Abby’s colon massage. They’ll survive for ten days without those. I have to pack their blender. They can’t go without their afternoon high protein smoothie. This is going to work. I will make every detail crystal clear.
* * *
When Sunday morning comes around I am ready to load up the Toyota and take the 45 minute drive east to Worcester Township, not far from Philadelphia. New friends and 80-acres of camp fun.
Last night Autumn and I made a check list of everything that needed to go in the van. Now she stands at the edge of our stone driveway like the Skipper taking roll call. Diapers, check. Wipes, check. Plastic gloves, Bibs, check. Meals, check. Toiletries, check. Green wedge, check. Extensions tubes, check. Back up mic-key G.I. button, check. Tumble form seat and bolster, check.
After loading the two plastic bins of food and supplements there isn’t any room left for Libby or her wheelchair. Abby is already in the car and we want to arrive in time for lunch. Our caregiver Rachel arrives just then. She’ll stay at home with Autumn so I can give my full attention to transitioning Abby and Libby to the counselors. She, thank God, helps me reorganize the van so everything fits.
The sisters say goodbye to each other. I hug Autumn and we drive off. The twins are unusually quiet in the back seat perhaps contemplating the adventure ahead. I turn on the radio hoping it will help keep me awake.
The campgrounds look more like a carnival. The parking lot is full of mini and oversized vans. Naturally, the handicap spots are all taken. I follow the lead of the Dodge van in front of me and parked on the grass. Children are spread about the campus. Two dark skinned boys race around the perimeter of the pool in motorized wheelchairs. Aromas of French fires, popcorn and cotton candy drift out the windows of the cafeteria. I hurry out, open the rear door, lift out Libby’s chair and swiftly maneuver her out of her car seat and into her wheelchair. When I lift Abby down to the ground and turn I see a short stocky girl with slanted eyes holding Libby’s hand and smiling at her. “Who are you?” asks Abby.
“I’m Katie. I’m a camper.”
Together, the four of us roll into the Directors office.
“Hey Katie, are you greeting our new campers?”
“Yep, Mr. Wilcott. It’s Libby, she don’t talk.” Libby lets out a serene squeal in disagreement. Mr. Wilcott asks me to sign a few waivers permitting Abby and Libby to participate in every aspect of the camp with supervision. I had previously arranged for a nurse to work the standard 8-5 shift each day with Libby: her GI feeding tube, history of seizures and inability to save herself required this.
“Okay then,” the Director says with less of a smile than I expect. “Looks like you have her nursing shifts covered. We’re in good shape. Take the girls back to your car and go ahead and drive over the grass to cabin 8 to meet their counselors.”
I thank him and turn to leave. “Oh, one more thing,” he says to my back. “After you bring Abby and Libby to the cabin, head over to the nurse’s station to check in and drop off their medications.”
“Ah, I don’t have any medications.” He should know this. Jennifer signed off on it. “I know. You have to check in with the nurse anyway. She needs to be familiar with every child here.”
Oh.
Sarah, Liz and Monica are waiting on the porch beneath a rainbow painted banner that stretches across the full length of the cabin announcing WELCOME ABBY, LIBBY, MARIE, JODI, ROZY AND EMMA TO CABIN 8. Emma arrives before us. She runs up to Abby and stands directly in her face. “I’m nine. My cabin. You can’t come in!”
Abby shifts awkwardly wringing my hand. Liz immediately takes Emma by the hand. “This is Emma. This is her third year at camp; she’s being a bit territorial, but she’ll calm down. After lunch she’s due for another med. Hi Abby. I’m Liz, I’m one of your counselors. I’m glad to meet you.”
Emma appears fairly typical to me, a bit aggressive. Her situation isn’t my business. I just pray she doesn’t hit Abby or Libby while they’re sleeping.
The counselors are in their early twenties, super friendly and eager to accept my charges for the 10-day fair. They help us unpack the van. We easily go through particularities along the way. I show them my four lists of instructions, numbered one to thirty-one—bullet points, stars, and red underlines to highlight the important points. I spent two days packaging each meal item with post-its in baggies marked “Day 1,” “Day 2,” and so forth, all the way to “Day 10.” Sticky notes read, “Refrigerate after opening.”
We chat a good hour about my girls before I go to the nurse’s office. The counselors are smart athletic college girls undaunted by lengthy instructions. “No big deal,” claims Liz, the lead counselor. “We’ll manage just fine, won’t we, Abby and Libby?” They are well on their way to bonding with the twins.
I walk out of the cabin, the caravan of vans now gone. A handful of moms are left at two of the three tables signing off their medically-fragile children. I watch a large woman lean over the top of her daughter’s wheelchair to hug her head and then dash off with a quick “See you in two weeks!” The girl is unresponsive; she looks half dead staring out, jaw wide open, drool running down her chin, alone in the middle of the room. I look at the stacks of large plastic zip lock bags sealed with opaque brown bottles. My stomach feels queasy, a knot forming.
At that moment I’m not sure who is more exhausted: me or the nurse. Without looking up she asks me to put our medications in a big plastic bag. “Sign here and fill out the emergency release forms and you can leave.”
“I don’t have any medications.”
Her head pops up with a stern glare through her glasses. Suddenly I feel like an alien.
“You don’t have medications? Let’s see here. Twins with cerebral palsy and you don’t have any medications? Libby has a seizure disorder and no meds!”
“Libby hasn’t had any seizure activity for three years.” I knock on her wooden table, hoping it will shake her mood. “Both of my daughters are on special diets. I made previous arrangements with Jennifer and Mr. Wilcott. The counselors have everything they need.”
“What do you mean? What do they need? They must have medications! And what is this – they haven’t been immunized.”
I feel a numbing pulse rushing into my arms. I’m scared I might faint. I’m glad Autumn isn’t with me. One of us is not going to make it out of here alive. I can feel it.
I meekly ask her if I can call in the Director. She agrees. They have a rather long chat with arms flying up in the air. Ten minutes later he walks over and tells me I can leave.
I stagger back to the cabin. The counselors already have the girls in the mess hall for lunch. One is feeding Libby her pureed meal. Another is holding Abby’s hand asking her to eat. Abby is entranced with a large boy at the next table who is banging his cup on the table and snorting like a pig. I stay until a big guy in a white t-shirt with a red heart on it stands up on a platform and starts yelling.
“Which cabin table can make the most noise? Let’s hear cabin 6!” All at once the place is in an uproar. Libby kicks the dish out of her counselor’s hand. Abby bolts forward with a non-sensible screech into a pool of catsup. A French fry just misses my head. I decide to disappear before the fall-out gets any worse.
I am ten minutes away from home when my cell phone rings. “Hello, Mrs. Ginty? This is Mr. Wilcott. We need you to come back to camp. We’re not going to be able to keep your daughters here.”
I almost skid off the road. “Tell me you’re kidding!”
He explains that the intake nurse is not comfortable with Libby’s medical needs and that she doesn’t have any medications for her seizure disorder.
“What? But she doesn’t have a seizure disorder anymore!”
“You have to come back. I can’t override standard medical practices.”
Tears are already pouring down my face. What am I supposed to tell Autumn? We have a plane to catch at 6 am. Come hell or high water we were getting on that plane.
I turn around and drive back to camp.
* * *
In the past seven years I’ve met plenty of lunatics (not to say that I haven’t also met a few very balanced and open-minded medical personnel, each trained to do what they have learned is the best for a given situation).But this nurse takes the cake. For some strange reason I name her Nurse Bullwrinkle.
I come up the ramp. Nurse Bullwrinkle is sitting in a chair next to a triple decked tray that is lined up with medications. I can see the wrinkles in her face as she squints over a pile of prescriptions.
As soon as she sees me, steam pours out of her ears. She stands up, kicks her feet back a few times as if to gain traction, and races at me with syringes in either hand.
“I told you. You can’t leave these girls here without their medication! Where’s their medication?”
“And I told you. They don’t have medication. They are doing well without it.”
She points to the list of supplements I typed up for the counselors. “What is this? What is this? Calcium, magnesium and elderberry syrup aren’t medications. Anything that goes into your child’s mouth that isn’t food requires a prescription. Where’s your prescription? And what if your child has a seizure and we do not have a prescription to give her Valium? What then?”
“Valium! You’re not giving my child Valium.”
“All of the children with seizures get Valium or Phenobarbital.”
I want to wave a red cape in front of her, try to dizzy her like a matador. “Libby used to take those drugs and she got deathly ill. We’re not doing that anymore. She’s healthy and seizure free. We have a tried and true treatment plan.”
“You need medications to treat illnesses. And what’s with all this special food? We serve three meals a day. No other families send food. We can’t take this. We don’t know what it is!”
I mutter idiot under my breath. “The counselors already took the list. They said it would be no trouble. They’re doing fine. I wrote up very detailed instructions. They’re happy to do it.”
By now scores of children are being rolled up the ramp. The rest are being corralled to get in line.
Nurse Bullwrinkle tells me to go sit in the other room. “Don’t leave,” she barks.
I cannot sit. I pace. I call home and explain to Rachel what is happening. I am too upset to speak with Autumn. I just want to cry but instead I raise my voice in frustration. Bullwrinkle’s puffy head looms through the door. “Please keep you voice down. I have 60 more children to get through this line before bed. They need their medications.”
Slam.
I need to duct tape my lips before I retaliate with something I will regret. This is crazy. She’s holding me captive. I still have to drive home, pack my bag, and get up at three in the morning with Autumn for our flight.
After an hour of pacing I decide to slip out the back door to see how Abby and Libby are doing. One of the counselors, Liz, sees me coming and steps outside. “Sarah is reading bedtime stories, they’re almost asleep. Your girls are a riot. Thanks for bringing them here.”
I want to fall into her arms. “The Director called me back. The nurse won’t let me leave because I don’t have seizure meds for Libby and I need a prescription for the supplements. I wish they told me this when we came for our visit.”
“Oh no. I bet it’s because our regular nurse cancelled out at last minute, some kind of family emergency. She’s a sub. She sounds like the nurse from hell. I’m sorry she’s putting you through this. I better get back inside. Don’t worry about your girls. We’ll take care of them.”
I can only hope that Liz gets the chance to take care of them.
I slip back to find Nurse Bullwrinkle waving two stacks of paper in front of my face. “Mrs. Ginty. You need to fill out these forms. List each supplement, dose, frequency, and any precautions. Your Doctor has to sign off on each prescription.”
My stomach clenches. “These are not drugs. And I can’t get a hold of our Doctor on a Sunday night.”
I had already provided this on a supplemental form during the interview. She was making me do it again. I want to knock her glasses off and ram her right back into a corner.
“Oh my God,” I yelp. “Tell me you’re kidding! I’ve been sitting out here for the past three hours waiting for you to dispense drugs and now you’re asking me to fill out more forms.” Could I get through this without strangling her? I scribble through the pages feeling intense pressure in my head. What next?
She charges at me again. “I can’t get a hold of your nursing agency. Before you can leave they need to fax us a schedule with the names and phone numbers of the nurses that will be here with Libby during the day. And if one of those nurses doesn’t show up I’m calling you and you will come and pick up your child.”
It’s getting dark outside and the heat isn’t letting up. How the hell am I going to get a signed schedule on a Sunday night? I see fangs rising out of her mouth. Where’s the duct tape? I best shut up. She hates me. She hates my daughters and she hasn’t even met them. She hates Autumn. She doesn’t want us to have a vacation.
I pace around the room frantically pushing numbers on my cell phone. What Doctor will be around on a Sunday night?
Twenty minutes later I get a call back from our nursing agency; it’s Mike, the supervisor.
He’s already privy to Abby and Libby’s alternative treatment approach. We’ve received respite nursing services from his agency for the past year. He tells me he’ll talk to Nurse Bullwrinkle and get everything worked out. He’ll have the Doctor fax over his signature the next morning.
I want to jump through the phone and smother him with kisses.
It’s now 11:15 P.M. Nurse Bullwrinkle strolls through the door. “Mrs. Ginty,” she snorts. “You can leave now. But I swear if one of those nurses is more than fifteen minutes late. I’m calling you and you better get here as fast as possible.”
Ay, ay!
It is 2 a.m. when I fall into bed. The alarm sounds one hour later.
* * *
I am tired, grumpy and internally battle-scarred from yet another clash with the bloody horns of western medicine. Victorious or not, I still carry the burden of feeling at odds with the institutionalized protocol of mainstream culture. Again, the best-laid plans ended in a drag-down exhausting confrontation. And my prolonged lack of sleep isn’t easy to shut off. I want to switch on a button that will refresh my spirits and let me give my full attention over to young playful Autumn.
Our friend Bill gets us to the airport in time. Autumn wants to read books together and draw pictures but I can’t keep my eyes open. When we get to California, we rent a convertible as planned. Autumn wants the top down. I want everything closed tight. I want to crawl into a ball of sorrow and cry about unfairness. I want my life back before twins. I ache for a good night’s sleep. A week before, I’d been certain that whatever Autumn wanted to do, I’d be game. But I repeatedly hear myself yell, “Oh my God, is that what nine-year-olds listen to?”
Gradually, a sense of spontaneity returns, and we have what we have. Our time isn’t as cozy and joyful as I wanted it to be, but it is our time to be together. We stay at Marin Headlands, hike along the coast, make sand castles, and chase each other. At the end of the day I poop out long before Autumn. We visit a few good friends in Santa Cruz, go to the boardwalk, and spend a night at Kiva Retreat hot tubs. We visit Grandma Alice and charge into her swimming pool. We splash into a game of tea party under water. We play follow the leader off the diving board. We dunk each other under water and do belly flops off the side of the pool.
I happily picture Abby and Libby doing the same thousands of miles away.
One day Autumn catches me staring off into space, my mouth turned into a frown. I am reliving that day I dropped the twins at camp and don’t realize it shows. “Mom. Are you still stressed about that nurse?” my daughter asks me.
I lift my head and her eyes squarely catch mine. “You know,” she says. “You can let it go. Just let it go.”
You know you can let it go. My belly softens. Can I let go? Can I let it all go?
For a moment I get it. I can let go of my endless agendas to fix the twins, to heal their brain injuries, to make life easier by appearing more graceful, alive, less dependent on others to help us. I can let go of the wish to have life look the way my mind thinks it should look—to have my three daughters playing together in the sand gathering coral shells in the warm sea breeze.
Part of letting go is agreeing to write this book. From a religious upbringing in the home of an alcoholic father, to University and Ashram life, to an ancient calling to live in service of universal truth, to the birth of my babies at twenty-six weeks, my heart is ready to let loose its secrets. I want to stay true to what I’ve always known in the depths of my heart, realized time and again, and have become established in through the raising of my daughters. I want to share this journey of the feminine heart.
In the following pages I will share many stories of how I arrived in such a place as this and the revelations and ordeals I encountered along the way, each offering a new jewel of wisdom. My wish is to show you the common threads of our spiritual journey amongst an array of differences. If I do this well, your heart will be touched as mine has been touched over and over again by the magic that lies in the souls of all children—all people. Your eyes will open with a ray of possibility that narrows the difference between you and me, right and wrong, should and should not, and embraces the rapidly growing population of children—people with special needs, learning differences or emotional challenges. You will feel inspired to look beneath the surface of circumstances, labels, character types, treatment plans, or western medical paradigms, to the way of love that is so natural to children. A way that is actually natural for all of us when we listen beneath words to what is truly wanted. Then, when you or I see a child who appears differently than what we expect or arrive at a circumstance that is not what we think it should be, the tendency to recoil, shut down or turn away in fear will dissolve. Instead, we can pause and let that child or that circumstance crack open our heart and teach us a new response, a new way of being. Perhaps that response is love—the true nourishment that all people yearn for.
Go to other publications:
- Feminine Flow of Wisdom
- Stop Turning
- Mommy, Can I Nurse?
- Insight Magazine with Suzie Daggett
- Interview with KMVR
- Interview with Elaine Huang
- KVMR with Alan Stahler
“I love your writing and the story is so touching… I am pulled in by the spiritual openings your girls give and I want to read more to learn how you were able to transform this situation and not give up in front of such a impossible task.”
~ Helena Montelius, Author and Meditation Teacher North San Juan, CA
“Congratulations. This is a very important book that you are crafting with brilliance and heart. Your poignant story telling touches us with universal themes … love, empathy, forgiveness, struggle, and humor… Your resolve to complete this good work is a gift of encouragement and hope filled with possibility.”
~ Paul l. Jaffe LCSW Nevada City, CA
“What a wealth of jewels—such captivating vignettes—you demask the raging archetypal oppositions—daring the knowingness to taste the facets—calming the children scared of shadows—I so much enjoy your creative radiance—your vision and heart-warming affirmation.”
~ Peter Cohen, Oregon House, CA
“Hello Prajna, You have a heartfelt and authentic human voice. Your writing compels us and teaches us how to see life with new eyes. This is solid good writing that flows well and speaks to all of us. Congratulations! You are on your way with an invaluable book on healing with love. I see you on Oprah now, sharing your gift with the world.”
~ Tom Wilson, PhD Sacramento, CA