He is Ulysses, not Down Syndrome by Desiree Lowit

My son was born when I was 22 years old. He was conceived during one freezing winter in Lake Tahoe, CA.
When I discovered I was pregnant, my immediate reaction was that I was too young to have a baby and that I should have an abortion. When I spoke with Ethan, my boyfriend at the time and father-to-be, he did not share my concerns and thought having a baby was a great idea. Looking in a mirror, admiring my new, baby-full appearance, I considered what he said and immediately fell in love with our unborn child.
I got a great job as a waitress. I spent the entire summer eating healthy, taking my vitamins, practicing pre-natal yoga, hiking several miles every day, swimming in the lake, resting, reading and listening to beautiful music.
I went into labor approximately three weeks before the baby was due. I opted for a natural childbirth. On September 25th, 2000, my son was born with assistance from my doula at Tahoe Forest Hospital in Truckee, California. He was beautiful and perfect. I held him and immediately tried to nurse. He was not interested. He rested his little head on my chest while his father and I were overwhelmed with happiness and awe.
The nurses whisked him away to do some basic newborn tests. I took a much needed shower. An hour passed and my son was still not in the room. Some more time passed and he was returned. The nurse was flustered, exclaiming that his respiratory rates were high and erratic. She escorted my son and me into another room.
I tried to nurse and again he was not interested. When she gave him a bottle of electrolytes, he would not take it. Then the nurse asked "Did you do any drugs during your pregnancy"?
This was the turning point, when I knew something must be seriously wrong. Of course I said "no" and was upset with her comment. The nurse took him away again and told me to try to get some rest. Despite the growing concern for my son's health, I fell into a very deep sleep. I had not slept in over twenty-four hours.
At about three o'clock in the morning, I was awakened by the on-call pediatrician and a few nurses. The pediatrician tried to explain, "Excuse me... uh Ms. Lowit... we need to talk with you in regards to your son... we think your son may have a mild case of Down syndrome and he needs emergency open-heart surgery... so the life flight team from UCDMC will be here in twenty minutes to fly him down to Sacramento... they have wonderful surgeons there... hey, if I had to send my kid, this is where I would send him... I mean don't feel so bad about Down syndrome... there was this show a few years back... oh, with that guy Corky... yeah, its fine don't worry... "
I was in shock and didn't know what to say. I tried to diminish the impact of what the pediatrician had said, but there were no words and there was no possible way to lighten the gravity of the situation. This was very serious and this is what we had to accept. I awoke Ethan. We walked into the nursery to find our baby boy lost in an array of tubes and wires. We were not allowed to touch or hold him. His breathing was labored, he was suffering and in crisis! I went out into the hall to call my roommates and then I burst into tears.
What did this mean? What was happening? Did I do something wrong? Was he going to die? What was Down syndrome? Would my son be incapacitated his whole life? I honestly had no idea what this meant. It was obvious that other than the common medical needs and ailments that can inflict a person with Down syndrome, the hospital workers had no idea either.
The helicopter arrived and the medical staff intubated my son and then rushed him out the door. We packed our things and headed out to our car for the drive to Sacramento. I had fresh stitches from giving birth and was bleeding heavily. I never felt so helpless. He was gone and I was convinced he would have died by the time we got to him. Everything was happening too fast.
At the Neonatal Intensive Care Unit (NICU) we were required to wash our hands thoroughly, and wear hospital gowns over our clothing. In the nursery we saw him being fed by an NG Tube that had been placed through his nose and into his stomach. He had sticky pads on his chest connected to wires that gauged his heart rate, more wires attached to his fingers monitoring his oxygen and saturation levels, a Broviac (an IV line for multiple uses) placed in a vein in his forehead, a nasal catheter taped to his face and a huge tube that was placed down his throat so he could receive oxygen. We were afraid to pick him up or touch him in fear that we would disconnect a life-saving wire or some other device that would cause all sorts of alarms to go off, then panic and then certain death. So we just sat down. We were both dizzy with fear and anxiety.
A wonderful nurse named Joyce came over to us and she welcomed us to the NICU and started to explain. Our son had the NICU staff very worried last night when he arrived. Fortunately things started to regulate for him and at the moment he was doing about as well as he could. Shortly after we met with Joyce they took out the ventilator and he was now on 50% oxygen with the nasal catheter.
Joyce explained that it was possible for us to hold our baby. We would have to wait while she ran out to get a rocking chair and some pillows. She came back and very carefully set us down and arranged the pillows for us. She swaddled him in two receiving blankets and blessed us with the long awaited opportunity to hold our baby. My body had been aching for him. Everything in my body was screaming to nurse.
Unfortunately, this would not be a possibility. He could not eat the natural way just yet; he had an NG tube and a nasal catheter for oxygen. He would undoubtedly have trouble learning to breastfeed anyway, as it was understood that kids with heart conditions have low energy. With the help of a breast pump he could receive breast milk, as this would be fed through an additional tube through the NG tube and then down into his stomach.
We remained at the NICU for four weeks. Our entire stay at the NICU was, needless to say, very trying. The medical lingo for Down syndrome was essentially etched into our minds. The nurses and medical staff were not always the most comforting group. Their job was to make it clear that our child was in fact very different, that our child was 'retarded' and that we should be pleased because as far as they knew he might not be that retarded.
The word 'retarded' brings tears to my eyes, because my son is not 'retarded.' Anyone who would use this word in relation to my son is lacking in education and sensitivity.
In the NICU, even the minor things that are common for newborns such as jaundice or diaper rash were attributed to my son not having been born "normal." In an environment like the NICU I never felt more discriminated against for my son's 'disability'. It seems that this sector of the hospital would be an arena full of 'professionals' more educated in the psychosocial realm of disability and healing for new parents. Apparently, no discourse or training has been designed for healthcare employees in this area of Western medicine.
I understand that hospitals are often under staffed with overworked and underpaid employees. It is the mentality of the system that perpetuates this old and conventional wisdom that reinforces discrimination. He was not in the NICU because he was born with Down syndrome; he was there because he was born with a heart condition. Granted there are medical issues that do come with Down syndrome -- a heart condition being one of them -- yet it is nothing so extreme that it would warrant our attention constantly being brought to his perceived 'disability'. Their approach to Down syndrome was as if my son were inflicted with some sort of horrible and contagious disease. My son is who he is and Down syndrome is something that he was born with, but it does not define him as a person.
Western medicine's definition of Down syndrome foresees an ominous future as nothing but despair for the individual who might have had the unfortunate chance -- as far as they are concerned -- to be given such a label. There is a stigma against any kind of 'anomaly' in the world of Western medicine. It is the nature of western science to be cut and dry and to the point. As a new parent to a child who was given such a label reading a clinicians' journal in search of some comfort amidst explanation and facts, one cannot help but feel overwhelmed by the pessimism. It is boring and depressing literature. There are better ways to clarify certain 'conditions'.
While we were incarcerated at medical center, I experienced some minor postpartum complications. Being so far away from home I couldn't see my doctor so I had to go the emergency room at the medical center. I waited for an hour or so before anyone could see me. The nurse came in and stuck me with an improperly inserted IV. I told her we were in the hospital because my son was born with Down syndrome and he had a heart condition. She was shocked and said, "Oh I am so sorry". I told her that having a child with Down syndrome does not warrant an apology. I told her that I am happy as my son is, and I love him as I would any child of mine. I was just upset that he had to have heart surgery.
Because of the physical pain she incurred with the IV combined with her insensitive and typical comment, I will never forget this moment. It was in this moment that I became an advocate for my son and all people like him.
By this time, my son's father and I were on a warpath. We would do anything to get out of the hospital. We even threatened to leave with our son without permission from the hospital. The nurse on call thought we might be serious and was prepared to call the police.
The weeks crept by. My son seemed to be getting worse and then better and then worse. Finally, after four grueling weeks at the medical center, we were officially discharged. We joyfully and frantically packed our things. We had to go through one final inspection to determine that we had installed our car seat properly. Then we literally ran out the door. We ran because we were honestly afraid that they would change their minds and make us come back. We ran outside into the sun and realized that this was the first time our son had ever been outside in fresh air under the sun.
We were so nervous and worried because we didn't know what it would be like to handle our son without supervision. We drove some three hours back to Tahoe and finally brought our baby home. He weighed 6 lbs. and he was so tiny. I slept with him for the first time. We slept on the floor on a comfy array of blankets. I couldn't sleep. I was up constantly to make sure he was breathing. The nurses told me how to check if he wasn't getting enough oxygen to see that his mouth was blue or not. I couldn't tell; his mouth always looked blue to me so I kept calling the pediatrician.
Every two weeks we would drive down to Sacramento to see the cardiologist. The doctors were unsure as to when he should have open-heart surgery. On my 23rd birthday, the doctors called with a date. Two weeks later, we were in Sacramento handing our little son over to the surgeon for life-saving heart surgery. After an hour of pacing in the waiting area, the doctors and staff informed us that they would have to cancel the surgery because my son had a bad rash which could lead to more serious infection internally if they proceeded with the surgery. We were relieved yet strangely let down. We had waited and waited to have this surgery and just wanted to get it over with. We carried our little son and drove home back to Tahoe.
Three weeks passed and we were given another date. We arrived at the hospital and waited twelve hours before they could start the surgery. We paced in the waiting room for eleven hours. We waited, watched television, chatted maniacally on the telephone, and comforted each other. Ethan and I were all we had. There was no one else there with us. Too nervous to eat or think, we were stunned and overwhelmed, worried and scared.
The surgeon walked in to report that the surgery went well and that the medical team would be delivering our son to the PICU. We could see him in half an hour. We breathed a sigh of relief and found comfort in knowing that he was alive. This was all we wanted.
At the PICU our son had tubes coming out of his stomach, his nose, his arms, his toes, his ears, his mouth and several IVs connected on both arms. He was heavily sedated with anesthesia. He had a huge red incision (which had been sealed with glue instead of stitches) running down his chest. I couldn't say it at the time but I was thinking that this was what he would look like if he were dead. Fortunately this was not the case. His body was adjusting rapidly. The details are hard to revisit.
According to the latest statistical analysis, 90-98% of children born with Down syndrome who have a congenital heart defect undergo this surgery successfully. Fifteen years ago, children with DS had maybe a 10% chance of surviving surgery.
My son is fine now. He developed other post-operative complications that have since been worked out. I would say that it took him about a full year to truly recover spiritually and emotionally from the surgery. Anatomically speaking, it took about three months. I took him to an acupuncturist and cranio-sacral therapist for several months after to assist his natural healing process.
Now he is a happy little boy, so full of life, love, and curiosity. He is four years old and he is truly the most precious gift. He makes every morning feel like Christmas. When he wakes up and smiles and coos, I couldn't fathom life without him.
My life with my son is the same as any other life with a four year old. He has the typical defiance, curiosity, and precious qualities that any parent would appreciate and struggle with. He wakes up and brushes his teeth and eats breakfast. He gets dressed and is thinking about using the toilet one day, but right now prefers his training pants. We go to the park and pre-school, vacations and other adventures. He loves his dog, music, books, spaghetti, festivals, and school. He learns like other kids, and like other kids, he learns at his own pace. Yet he does learn as he is a smart little boy. The only thing different for my son is that we have extra help in areas like speech where he sees a speech therapist twice a week and an occupational therapist once a week.
Ulysses is my first child. This is our life and it is fruitful and full of interesting activities, people, and experiences. I love my son and would never want for him to be any other way. My son is an individual. He is a person. There is no need or desire to fix or change him. He is perfect.
Fortunately, most people who have met my son can look past the labels and see what a beautiful, charming, and mischievous little boy he is. We can only keep friendships with people who are truly interested and respectful of him, friends who embrace him as Ulysses and not as Down syndrome. Since we cannot befriend the whole world and help them to understand that there is no tragedy in having a child with Down syndrome, or any perceived 'disability' for that matter, I have devoted my time and efforts towards work that will educate the general public. In joint efforts with other organizations, we can extend this education and change in conventional wisdom to the rest of the world.
I hope that by the time that my son is an adult, he will live in a liberated society that does not impose limitations on him based on his appearance and perceived 'learning differences.'