India had a couple of really good years after my “come to Jesus” talk with the school. It’s not that she managed to learn much at school either academically or regarding her physical skills, but she was loved, appreciated, and included in everything. She learned to be a master manipulator; charming everyone with smiles and refining ways to avoid work. She learned to drive her power chair by herself and she became a total celebrity at school. In the meantime, we pulled her out of school a couple of times a year to participate in intensive physical therapy (4 hours a day) in Detroit, Michigan. She thrived as a result of the intense physical activity. Our spirits were high as she made huge strides physically, cognitively, and emotionally. The rewards of seeing a disabled child, your own disabled child thrive, are huge. The only thing I can possibly compare it to is the feeling performers describe when they are in front of thousands of cheering fans. But like in the past, our world came crashing down upon us yet again.
In August of 2004 I was in my office with two co-workers planning some new projects. I was feeling very refreshed and happy, we’d just returned for a great vacation to San Diego, Disneyland, and Santa Monica. It was a great getaway, probably one of the best we’d ever had as a family. Now that we were home, we were settling back into our daily routines. Veruca, India, and Harriett were at the girls’ piano lessons. They received lessons once a week from a really neat old guy who lived about twenty minutes north of town. Veruca regularly called me during the girls’ piano lessons so that I could hear them play. As I sat at the planning table in my office, Veruca called. I assumed she was calling to let me listen to the girls play or tell me about the session. I was wrong.
I answered the phone but before I could say hello, Veruca said, “India is having a massive seizure, it’s bad, really bad.” Up to this point India hadn’t had a seizure that we’d known of since she was a baby; we thought we were past this. Veruca went on to say she was at least twenty minutes away from the hospital, what should she do? By this point, I’d jumped out of my seat and was running to my vehicle. I told Veruca to go to the hospital as fast as she could, don’t stop for any reason. I told her to stay on the line with me, don’t hang up.
I arrived at the hospital within ten minutes of receiving the call from my wife. I raced into the emergency room and got the head nurse up to speed on what was happening, all the while listening to what was taking place in Veruca’ vehicle. To my horror, just as I finished talking to the head nurse, , my wife’s voice raised several octaves as she screamed, “Oh my God, she’s stopped breathing!” I could hear India’s little sister in the background saying, “Kake up India, wake up, please sissy!” It was a horribly cold and helpless feeling as I listened to Veruca crying, calling out to India to breath, her little sister pleading for her to wake up. All I could do was stand there and listen. Then Veruca started to scream, “Oh my God, oh my God, there’s foam coming out of her mouth, there’s blood.” I told Veruca to keep driving as fast as she could, and I did my best to speak to her in a calm voice, but I was panicking inside. Here was my little girl, seizing, not breathing, with foam and blood coming out of her mouth and my wife was still five minutes away from the hospital.
Standing at the emergency room ambulance bay door with the head nurse, my stepfather came running up. Somebody had called him. The relief I felt when he came up and put his hand on my shoulder was a lifesaver for me: I wasn’t alone anymore. He could hear Veruca crying on the phone, honking at cars to get out of her way. She screamed that she was stuck at a light with a bunch of traffic. I told her to start honking the horn, pull up on the sidewalk to get around the traffic, and run the red light. At this point I could hear the horn from Verucas’ car; she was close.
As she raced up to the awaiting medical team, I ran to the back door to get India out. To my horror, when I opened the door, my little girl was white and her lips were blue. There was a thick mixture of foam, vomit, and blood running down her chin onto her chest. India’s eyes were rolled back into her head, her legs and toes were pointed straight down, and her arms were rigid in the “Archers Position,” as a slow rhythmic beat pulsated through her little body. India’s little sister’s eyes were as wide a saucers, and tears were running down her face. She said to me “Daddy, India won’t wake up, she’s sick!”
The medical team rushed my daughter into a waiting triage room and began working on restoring her breathing and getting the seizures under control. Immediately, the doctor ordered a dose of anti-seizure medication but it didn’t work, she was still seizing. The doctor then ordered another higher dose, and this didn’t work either. Then the doctor pulled out a very powerful anti-seizure medication and began to calculate the dose based on my child’s weight and age. By this point, my stepfather had entered the room with Veruca and overheard the doctor’s calculations. My stepfather looked at the doctor, alarmed, and said “Your math is wrong.” The doctor took offense to this and said she knew what she was doing. Fortunately, one of the nurses overheard what my stepfather had said and double-checked the dose. The nurse then grabbed the doctor’s arm and said that she’d miscalculated the dose and would kill this little girl if she gave it to her. Another nurse then double checked the first two injection quantities given to my daughter and said that they had been miscalculated as well. My daughter had been overdosed and was in jeopardy of having her entire system shut down.
Horrified, I stood there as the head nurse pushed the doctor out of the way and began to take preventative measures. The doctor was clearly flustered; she had no idea what to do, she was incompetent. I grabbed one of the nurses, made her look me in the eye and asked if there was a better hospital for my daughter to be at right now. Everybody in the room was quiet as I repeated myself. The nurse looked around said, “This little girl needs to be at University of New Mexico Hospital Pediatric Unit in Albuquerque, we’re not equipped for this.” I spun around to look at the head nurse and said that I wanted my little girl on “Life Flight” immediately to get her to Albuquerque, 240 miles away, as quickly as possible. The head nurse nodded her head, made a call, and began to prep my daughter for the flight.
The emergency aircraft was too small for all of us to come along so we decided that mom would go in the airplane while I drove our youngest daughter up to Albuquerque to meet them. As they were putting my daughter in the ambulance to transport her to the waiting aircraft, I jumped in my vehicle and headed north, only stopping to fill up the gas tank. It was a long drive and I spent most of the time fielding questions from my youngest daughter about what had happened because she was traumatized. All the while, I was out of communication with Veruca. I didn’t know if India was alive or dead and it was a living nightmare.
When I arrived at the hospital in Albuquerque, I found my wife in tears and my daughter on life support. I was reliving the horror of what we experienced when she was hospitalized as an infant. I stood there looking at my little girl who’d been so healthy just hours before not to mention all the progress she’d made over the past few years. Would this seizure cause more brain damage? Would she lose all that she’d gained? Would she survive this? Would she be a vegetable?
There I was again, sitting next to my baby girl 24 hours a day, praying and hoping for the best. I held her little hand, talking and singing to her in the hopes she could hear me and know I was there. There are no words that can explain how I was feeling and I hope you never have to be in this position, whoever you are.
The doctors took my daughter off of life support about two days after we first arrived. India was still non-responsive and the doctors were very hesitant to say if she would be ok or not; it was a waiting game. Somehow, I had gotten my hands on a cute little stuffed bluebird. I kept it next to India on her bed along with some other stuffed animals. Hospitals are such sanitized, depressing places; I wanted some life and color around my child.
Late on the third day I was sitting next to India when she started to move. I jumped up and started talking to her, trying to get a response. She was clearly confused but I didn’t know if that was from massive brain damage or just her waking up after being under for three days. I kept talking to her, even sang a song and she just blankly looked around the room. I was devastated. I began to weep, my forehead on hers, all I could say is “I’m sorry, I’m so sorry.” I lifted my head, picked up the bluebird, and held it over to my daughter. Crying, I told her, “Look what I got you, baby girl, what color is it?” Before this seizure, she was able to identify and verbalize many of the basic colors. I asked her several more times what color the bird was but she was just staring up at the ceiling with an endless gaze. My world was crumbling to the ground and I was devastated. I leaned over, kissed her on the forehead, placed the bluebird on her chest, and turned to go give Veruca the bad news. I stood there for a moment, wondering how the hell I was going to tell her mother that India had lost her mental facilities, she was a vegetable.
Just as I began to walk out of the room, I heard India’s little voice say Bblue.” I spun around to see her looking at me and ran back to her bedside just in time for her to say “blue” again. I started crying, stroking her cheek, telling my baby girl how much I loved her and welcome back. I held up the stuffed bluebird and this time India gave a small smile and said “blue.” I felt an unworldly sense of relief. I lifted her up and held her in my arms, thankful that she was responsive.
It would still remain to be seen if she’d fully recover but for now, I was a happy father with my beautiful daughter.
* Here is list of what India participated in an 11 year period. I now know that some of these were a bad choice and a waste of time for my daughter and my family, but I didn’t know anything at that time, I was just holding out hope and accepted it from everyone who offered it. While not all items on this list are wise choices, all of them got here out of love and devotion for my daughter.
The Advanced Magnetic Research Institute “AMRI”: Michigan (provides treatments for a variety of disorders using a new device, the MME (Magnetic Molecular Energizer) which is similar to an MRI scanner). EXTREMELY EXPENSIVE – SIMPLISTIC THEORY – NO RESULTS WHATSOEVER.
Hippo Therapy: New Mexico (promotes the use of the movement of the horse as a treatment strategy in physical, occupational and speech-language therapy sessions for people living with disabilities). AFFORDABLE – MAKES SENSE, IT’S AN ACTIVITY – FUN.
Euro-Peds: Michigan (Unique and intense physical therapy treatment for children with Neuromotor disorders). EXTREMELY EXPENSIVE – WORKS GREAT AS IT IS PHYSICAL THERAPY IN A LARGE QUANTITY.
Massage Therapy: Canada, Michigan, New Mexico and California. PRICE VARIES – RELAXES HER AND MAKES HER FEEL GOOD.
Chiropractic Treatments: Canada, Michigan, New Mexico and California. PRICE VARIES –INDIA ENJOYS IT, MIGHT HELP A BIT, CAN BE DANGEROUS.
Physical Therapy: Michigan and New Mexico EXTREMELY EXPENSIVE WITHOUT INSURANCE – BASIC NEED, HAVE TO HAVE IT REGULARLY.
Occupational Therapy: New Mexico EXTREMELY EXPENSIVE WITHOUT INSURANCE – BASIC NEED, HAVE TO HAVE IT REGULARLY.
Recreational Therapy: New Mexico and California AFFORDABLE – GREAT FUN.
Speech and Language Pathology: New Mexico and Arizona (Speech-language pathologists work with people who cannot produce speech sounds or cannot produce them clearly) TERRIBLY EXPENSIVE WITHOUT INSURANCE – BASIC NEED, SHOULD HAVE IT ALL THE TIME.
Sensory Integration: New Mexico CAN BE AFFORDABLE – NOT SURE ABOUT THE RESULTS, BUT FUN.
Behavioral Therapy: New Mexico CHEAP – EXCELLENT RESULTS.
Swim Therapy: New Mexico CHEAP – EXCELLENT RESULTS, GREAT ACTIVITY And GREAT FUN.
Music Therapy: New Mexico CHEAP – GREAT FUN.
Craniosacral Therapy: New Mexico, Michigan, California (A Craniosacral Therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the Craniosacral System. The practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia. In this way, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spinal cord is said to be optimized, and misaligned bones are said to be restored to their proper position). EXPENSIVE – NO RESULTS WHATSOEVER.
Rolfing: New Mexico, Michigan, Colorado and California (is a system of connective tissue manipulation based on the theory that rebalancing and realigning the body with the earth's gravitational force results in more energy, increased breathing capacity, and alleviation of chronic pain.) EXPENSIVE – NOT SURE WHAT’S THE POINT – PT DOES THIS ANYWAY.
Yoga: New Mexico and Illinois CHEAP - GOOD RESULTS.
Botox: New Mexico (Botox injection benefits include ease in stretching, improvement in child’s range of motion, tolerance to wearing braces and developmental improvements in crawling, standing, or gait changes) AFFORDABLE – FIRST IT WORKED, LATER IT DIDN’T (AS STANDARD).
Feldenkrais Method: New Mexico (the Feldenkrais method is designed to improve movement repertoire, aiming to expand and refine the use of the self through awareness, in order to reduce pain or limitations in movement, and promote general well-being), EXPENSIVE – NO RESULTS WHATSOEVER – REGULAR PT WITH A GOOD THERAPIST IS WAY BETTER.
Hyperbaric Chamber: Canada (HBO therapy is a medical treatment that uses the administration of 100 percent oxygen at controlled pressure (greater than sea level) for a prescribed amount of time—usually 60 to 90 minutes). TERRIBLY EXPENSIVE – NO RESULTS WHATSOEVER.
Orthopedic Surgery: New Mexico (Soft tissue lengthening) TERRIBLY EXPENSIVE WITHOUT INSURANCE – WE’VE DONE IT TOO EARLY, AS WE DIDN’T KNOW ANY BETTER AT THE TIME.
Conductive Education, New Mexico, Canada, California and Colorado. AFFORDABLE, NOT A THERAPY – REQUIRES APPROACH AND LIFESTYLE CHANGES BUT IT TOOK YEARS TO UNDERSTAND WHY AND HOW. IF I UNDERSTOOD THE IMPORTANCE AND EFFECT OF SIMPLE LIFESTYLE AND ROUTINE CHANGES FROM THE BEGINNING, I COULD HAVE GONE SPENDING THE MONEY AND EFFORT I PUT INTO USELESS THERAPIES INTO FAMILY VACATIONS OR SOME OTHER USEFUL THING, AND INDIA WOULD HAVE ENDED UP AT A MUCH BETTER PLACE PHYSICALLY, COGNITIVELY AND EMOTIONALLY
India also attended some wonderful camps for children with disabilities.
Camp at the Bay: San Diego, California (Summer camp for children with disabilities, includes: jet skiing, water skiing, tubing, sailing, kayaking, baseball, swimming, ball games, cycling and hand cycling).
Camp Wet and Wild: San Diego, California (Summer camp for children with disabilities, includes: kayaking, snorkeling, surfing, crafts, special exhibits and field trips). BOTH OF THESE ARE AWESOME, AWESOME, AWESOME FUN, GREAT ACTIVITIES.
SAzU Pine Canyon Camp: Arizona (Mountain Cabin camp for children with disabilities).
Neil Young’s’ “The Bridge School” AAC by the Bay: Hillsborough, California (Provides a summer camp experience for people with complex communication needs).http://donniebrainard.blogspot.com/2010/04/our-day-in-hell-part-1.htmlhttp://donniebrainard.blogspot.com/2010/04/picu-our-day-in-hell-part-2.html