Inspirational Stories

Click on one of the eleven stories or poems below or just scroll down to read more:

• Your Baby will give you Joy

• A Child

• Justifications for a Life for a Person with Down syndrome

• Blue Lobsters

• The Thanksgiving Tree

• What you Should Know about My Child

• My Anticipated Son

• Challenged

• You are not alone: For Parents When They Learn That Their Child Has A Disability.

• He is Ulysses, not Down Syndrome

• FAMILY FINDS FAITH, FORGIVENESS: Locks of Love for one another

Your Baby will give you Joy you Can't Imagine

A father's testimony of love- a multi-media presentation (have sound on)

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Justifications for a Life of a Person with Down Syndrome:

Hello all,

For the past few weeks, I've been contemplating
writing this thought in response to a few different
articles and ideas posted here, yet I hesitate for
fear of upsetting some of the writers of beautiful and
eloquent posts.

Yet, I feel this message is too important to suppress
now. Several weeks back, someone posted an article
here written by a Washington Post writer, I believe,
that documented the wonderful joys her daughter
brought to her life, and the postscript was that her
daughter was attending a post-high school education
program. She wrote a heart-warming and engaging piece
showing the world that DS shouldn't be a death
sentence and that it is the type of abortion that we
need to address as a society.  I was moved by that
article, but also troubled.

Then, as I logged on to see the new newspaper story
about the woman who chose to terminate a pregnancy
after a prenatal diagnosis, I see responses that call
out to say "WAIT! Children with DS can participate in
higher education, Boy Scouts, get married, etc!"  I
agree, messages celebrating the accomplishments of all
people with DS should be heard.

Personally, as a parent I am uplifted and joyous when
I read about college graduates, married couples,
public speakers, and outstanding athletes with an
extra chromosome.  I am also overcome with joy when I
hear about an adult who has significant support needs
reaching out to others in acts of friendship, 8 year
old children taking their first step, and high school
students mastering their times tables -- or addition
facts.

One thing that my life as "Maren's Mom" has taught me
is that we need to celebrate the beauty and
uniqueness, strengths and triumphs of each person in
life -- regardless of when it comes. In fact, I often
find myself cheering most for those victories that are
hardest fought and won. Like all people, each person
with an extra 21st chromosome has unique strengths and
challenges.
A word for some is more victorious than paragraphs for
the rest of us. While some lament the fact that our
children have communication delays, I sit at an
academic conference and realize much of our population
needs to learn when to stop talking ;-).

What is troubling to me is that in our attempt to
"fight" or "protest" abortion and termination stories
is that we are providing the rhetoric that clearly
buys into an able-ist set of assumptions. Of all
people, we should be the ones who say "The quality of
a person's life is not in their IQ score, but in their
humanity." Instead, I find us (me included) often
saying "children with DS can join x, graduate from y,
live independently, marry" and yes, some if not many
can!

However, I'm afraid by going down that path of
persuasive appeal it is still easy to turn around. Ah,
but some cannot! And, therein lies the fear for many
-- and the justification for termination. We should be
advocating for valuing all children and adults with
all levels of ability, not creating a justification
for non-termination for what people can do, but rather
because of who they are. In other words, I think we
should more deeply attack the idea that ability
creates worth -- I do think it is a dangerous road to
go down.

I hope this makes sense as I'm rambling from a laptop
on a computer far from home :-).  I just want to say,
perhaps we should stop saying "Kids with DS can be
'normal'" and buying into a set of cultural
assumptions that say "normal" is good and instead
start saying "Life is valuable. Life is unexpected.
The beauty lies in the mystery, in the humanity, in
the soul ... not in the degree, the certificate, or
the badge."

A favorite author of mine is an American mythologist
named Joseph Campbell. He has many quotes I use
regularly, but one that really speaks to my heart
about having a child with T21, "We must be willing to
let go of the life we have planned as to have the life
that is waiting for us."  So often I read the
undertones of the "termination" reasons, and they are
veiled by "I don't want my child to suffer," when
really the reason is "I don't want to change my life's
plans."  Eventually, all of us find out life's plans
rarely follow the map with our explicit instructions.

Peace,
Carol (in Alabama and mom to Maren Flannery)

Blue Lobsters

Daughter's a rarity to treasure
By David Falcone
Boston Herald
Saturday, August 6, 2005

Couple of interesting items in the news the past few days that might have
slipped under the radar but are worth further review.
Both rarities for sure: blue lobsters and Billy Mueller.
The blue lobster - one in 2 million - results from a genetic anomaly. An
extra protein creates the cerulean hue. Like a golfer's hole in one, a blue
lobster is cherished by any fisherman lucky enough to pull one out of the
sea. A prince among lobsters, if you will, and often thrown back out of
reverence.
And Billy Mueller, the soft-spoken third basemen for the Red Sox. He works
hard and produces and then goes home to his family and forgets he's a
baseball player. He never complains. He does not seek attention by growing
his hair too long or asking out of a game because he's having a bad day. He
brings honor to a gathering of fools. What are the odds of that?
And so I dream of what I will tell my 2-year-old daughter one day. How
special she is. How rare - one in 1,000. An extra chromosome making three
where there is usually a pair. A total of 47 in a cell where there are
usually 46. An extra chromosome of perfectly good genetic material. An extra
bit of life entwined on a helix that continues to mystify us all.
How will I tell her that babies with Down syndrome every day are determined
by doctors and mothers and fathers to be a ``mistake,'' a ``burden,'' a
malevolence that must be eliminated.
In fact, the American Journal of Obstetrics and Gynecology tells us that
many pregnant women receive only negative information from doctors when a
prenatal screening indicates the possibility of Down syndrome. Other studies
show that the abortion rate of babies with Down syndrome is as high as 90
percent after such screenings. More babies with Down syndrome are being
aborted than are being born.
Out of ignorance we are killing angels. The knowing and loving gaze of these
children with beautiful almond-shaped eyes is seen less and less because
they will not see the light of day.
That's why I sit with my daughter and watch baseball. Happy that she's alive
and learning the greatest game ever invented, a perfectly beautiful game,
with all its mistaken measurements and odd configurations, played by rare
individuals.
I read her books and teach her colors, such as blue, for instance. The sky
is blue and the sea reflects its hope and promise. And beneath the sea's
dappled reflections, an occasional rare creature that is a symbol of wonder
and beauty we preserve rather than destroy.
What will I tell my daughter when she is old enough to understand?
I will tell her about blue lobsters and Billy Mueller.
Just my thought. Our kids are fine it is the perception of them that is the
problem.

You are not alone: For Parents When They Learn That Their Child Has A Disability.

Taken from:  http://www.ndss.org/content.cfm?fuseaction=CommFFP.NewArticle&article=420

By: Patty McGill Smith

If you have recently learned that your child is developmentally delayed or has a disability, which either is or is not completely defined, this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.

When parents learn about any difficulty or problem in their child's development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated - and so confused that I recall little else about those first days other than the heartbreak. Another parent described this event as a "black sack" being pulled down over her head, blocking her ability to hear, see and think in normal ways. Another parent described the trauma as "having a knife stuck" in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents' minds and hearts when they receive any bad news about their child.

Many things can be done to help a parent through this period of trauma. That is what this paper is all about. In order to talk about some of the good things that can happen to alleviate the anxiety, let us first take a look at some of the reactions that occur.

Common Reactions

On learning that their child may have a disability, most parents react in ways that have been shared by all parents before them who have also been faced with this disappointment and with this enormous challenge. One of the first reactions is that of denial - "This cannot be happening to me, to my child, to our family." Denial rapidly merges with anger, which may be directed toward the medical personnel who were involved in providing the information about the child's problem. Anger can also color communication between husband and wife or with grandparents or significant others in the family. Early on, it seems that the anger is so intense that it touches almost anyone, because it is triggered by the feelings of grief and inexplicable loss that one does not know how to explain, nor how do deal with.

Fear is the most immediate response. People often fear the unknown more than they fear the known. Having the complete diagnosis and future prospects can be easier than uncertainty. In either case, however, fear of the future is common emotion: "What is going to happen with this child when he is five years old when he is 12, when he is 21? What is going to happen to this child when I am gone?" Then other questions arise: "Will he ever learn? Will he ever go to college? Will he or she have capability of loving and living and laughing and doing all the things that we had planned?"

Other unknowns also inspire fear. Parents fear that the child's condition will be the very worst that it possibly could be. Over the years, I have spoken with so many parents who said their first thoughts were totally bleak. One expects the worst. Memories return of persons with disabilities one has known. Sometimes there is guilt over some slight committed years before toward a person with a disability. There is also fear of society's rejection, fears about how brothers and sisters will be affected, questions as to whether there will be any more brothers or sisters in this family and concerns about whether the husband or wife will love this child. These fears can almost immobilize some parents.

Then there is guilt - guilt and concern about whether the parents themselves have caused the problem: "Did I do something to cause this? Am I being punished for having done this? Did I take care of myself when I was pregnant? Did my wife take good enough care of herself when she was pregnant?" For myself, I remember thinking that surely my daughter had slipped from the bed when she was very young and hit her head, or that perhaps one of her brothers or sisters had inadvertently let her drop and didn't tell me. Much self-reproach and remorse can stem from questioning the causes of the disability.

Guilt feelings may also be manifested in spiritual and religious interpretations of blame and punishment. When they cry, "Why me?" or "Why my child?" many parents are also saying, "Why has God done this to me?" How often have we raised our eyes to heaven and asked: "What did I ever do to deserve this?" One young mother said, "I feel so guilty because all of my life I had never had a hardship and now God has decided to give me a hardship."

Confusion also marks this traumatic period. As a result of not fully understanding what is happening and what will happen, confusion reveals itself in sleeplessness, inability to make decisions and mental overload. In the midst of such trauma, information can seem garbled and distorted. You hear new words that you never heard before, terms that describe something that you cannot understand. You want to find out what it is all about, yet it seems that you cannot make sense of all of the information you are receiving. Often parents are just not on the same wavelength as the person who is trying to communicate with them about their child's disability.

Powerlessness to change what is happening is very difficult to accept. You cannot change the fact that your child has a disability, yet parents want to feel competent and capable of handling their own life situations. It is extremely hard to be forced to reply on the judgments, opinions and recommendations of others. Compounding the problem is that these others are often strangers with whom no bond of trust has yet been established.

Disappointment that a child is not perfect poses a threat to many parents' egos and a challenge to their value system. This jolt to previous expectations can create reluctance to accept one's child as a valuable, developing person.

Rejection is another reaction that parents experience. Rejection can be directed toward the child or toward the medical personnel or toward other family members. One of the more serious forms of rejection, and not that uncommon, is a "death wish" for the child - a feeling that many parents report at their deepest points of depression.

During this period of time when so many different feelings can flood the mind and heart, there is no way to measure how intensely a parent may experience this constellation of emotions. Not all parents go through these stages, but it is important for parents to identify with all of the potentially troublesome feelings that can arise, so that they will know that they are not alone. There are many constructive actions that you can take immediately, and there are many sources of help, communication and reassurance.

Seeking the Assistance of another Parent

There was a parent who helped me. Twenty-two hours after my own child's diagnosis, he made a statement that I have never forgotten: "You may not realize it today, but there may come a time in your life when you will find that having a daughter with a disability is a blessing." I can remember being puzzled by these words, which were nonetheless an invaluable gift that lit the first light of hope for me. This parent spoke of hope for the future. He assured me that there would be programs, there would be progress and there would be help of many kinds from many sources. And he was the father of a boy with mental retardation.

My first recommendation is to try and find another parent of a child with a disability, preferably one who has chosen to be a parent helper, and seek his or her assistance. All over the United States and over the world, there are Parent-Helping-Parent Programs. The National Information Center for Children and Youth with Disabilities (NICHCY) has listings of parent groups that will reach out and help you. If you cannot find your local parent organization, write to NICHCY to get local information.

Talk with Your Mate

Over the years, I have discovered that many parents don't communicate their feelings regarding the problems their children have. One spouse is often concerned about not being a source of strength for the other mate. The more couples can communicate at difficult times like these, the greater their collective strength.

If there are other children, talk with them, too. Be aware of their needs. If you are not emotionally capable of talking with your children or seeing to their emotional needs at this time, identify others within your family structure who can establish a special communicative bond with them. Talk with significant others in your life - your best friend, your own parents. For many people, the temptation to close up emotionally is great at this point, but it can be so beneficial to have reliable friends and relatives who can help carry the emotional burden.

Do Not Be Afraid to Show Emotion

So many parents, especially dads, repress their emotions because they believe it to be a sign of weakness to let people know how badly they are feeling. The strongest fathers of children with disabilities whom I know are not afraid to show their emotions. They understand that revealing feelings does not diminish one's strength.

Learn to Deal with Bitterness and Anger

Ultimately, bitterness and anger will hurt you a great deal more than they will affect those toward whom the anger is directed. It is very valuable to be able to recognize your anger and then let go of it. It is understandable that parents will be bitter and angry and disappointed to learn that their child has a serious problem. When you realize that these negative responses tend to hurt you and make you less effective with your child, you can decide to do something about them. Life is better when you are feeling positive. You will be better equipped to meet new challenges when bitter feelings are no longer draining your energies and initiative.

Adopt a Grateful Attitude

It is hard to remain angry when one is grateful. Sometimes, when everything seems to be going wrong, it is difficult to find a cause for gratitude. However, in the scheme of things, if you look around and count your blessings, perhaps positive feelings can overtake the more negative ones.

Maintain a Positive Outlook

A positive attitude will be one of your genuinely valuable tools for dealing with problems. There is truly always a positive side to whatever is occurring. For example, when my child was found to have a disability, one of the other things pointed out to me was that she was (and still is) a very healthy child. The fact that she has had no physical impairments has been a great blessing over the years; she has been the healthiest child I have ever raised.

Keep in Touch with Reality.

To stay in touch with reality is to accept life the way it is. To stay in touch with reality is also to recognize that there are some things that we can change and other things that we cannot change. The task for all of us is learning which things we can change and then set about doing that.

Remember that Time is on Your Side

Time heals many wounds. This does not mean living with and a raising a child who has problems will be easy, but it is fair to say that, as time passes, a great deal can be done to alleviate the problem. Therefore, time does help!

Find Programs for Your Child

Even for those living in isolated areas of the country, assistance is available to help you with whatever problems you are having. While finding programs for your child with a disability, keep in mind that programs are also available for the rest of your family, too.

Rely on Positive Sources in Your Life

One positive source of strength and wisdom might be your minister, priest or rabbi. Another may be a good friend or a counselor. Go to those who have been a strength before in your life. Find new sources that you need now.

A very fine counselor once gave me the recipe for living through a crisis: "Each morning, when you arise, recognize your powerlessness over the situation at hand, turn this problem over to God, as you understand Him, and begin your day."

Whenever your feelings are painful, you must reach out and contact someone. Call or write or get into your car and contact a real person who will talk with you and share that pain. Pain divided is not nearly so hard to bear as is pain in isolation. Sometimes professional counseling is warranted; if you feel that this might help you, do not be reluctant to seek this avenue of assistance.

Take One Day at a Time

Fears of the future can immobilize one. Living with the reality of the day which is at hand is made more manageable if we throw out the "what if's" and "what then's" of the future. Good things continue to happen each day. Take time to "smell the roses."

Learn the Terminology

When you are introduced to new terminology, you should not be hesitant to ask what it means. Whenever someone uses a word that you don't understand, stop the conversation for a minute and ask the person to explain the meaning.

Seek Information

Some parents seek virtually "tons" of information; others are not so persistent. The important thing is that you request accurate information. You should not be afraid to ask questions, because asking questions will be your first step in beginning to understand more about your child. Learning how to formulate questions is an art that will make life a lot easier for you in the future. A good method is to write down your questions before entering appointments or meetings, and write down further questions as you think of them during the meeting. Get written copies of all documentation from physicians, teachers and therapists regarding the your child. It is a good idea to buy a three-ring notebook in which to save all information that is given to you. In the future, there will be many uses for information that you have recorded and filed; keep it in a safe place. Again, remember to always ask for copies of evaluations, diagnostic reports and progress reports.

Do Not Be Intimidated

Many parents feel inadequate in the presence of people from the medical or educational professions because of their credentials. Do not be intimidated by the educational backgrounds of these and other personnel who may be involved in treating or helping your child. You do not have to apologize for wanting to know what is occurring. Do not be concerned that you are being a bother or are asking too many questions. Remember, this is your child, and the situation has a profound effect on your life and on your child's future. Therefore, it is important that you learn as much as you can about your situation.

Take Care of Yourself

In times of stress, each person reacts in his or her own way. A few universal recommendations may help: Get sufficient rest; eat as well as you can; take time for yourself; reach out to others for emotional support.

Avoid Pity

Self-pity, the experience of pity from others, or pity for your child are actually disabling. Pity is not what is needed. Empathy, which is the ability to feel with another person, is the attitude to be encouraged.

Avoid Judgments

During this period, parents may become judgmental about the way people are reacting toward them or toward their child. Many people's reactions to serious problems are based on a lack of understanding, fear of knowing what to say or fear of the unknown. Therefore, others may sometimes react inappropriately, but you need not use too much energy in being concerned over those who are not able to respond in ways that you might prefer.

Keep Daily Routines as Normal as Possible

My mother once told me, "When a problem arises and you don't know what to do, then you do whatever it was that you were going to do anyway." Practicing this habit seems to produce some normalcy and consistency when life becomes hectic.

Remember That This is Your Child

This person is your child, first and foremost. Granted, your child's development may be different from that of other children, but this does not make your child less valuable, less human, less important or in less need of your love and parenting. Love and enjoy your child. The child comes first; the disability comes second. If you can relax and take the positive steps outlined, one at a time, you will do the best you can, your child will benefit, and you can look forward to the future with hope.

Recognize That You Are Not Alone

The feeling of isolation at the time of diagnosis is almost a universal feeling among parents. In this paper, there are many recommendations to help diminish those feelings of separateness and isolation. You can diminish these feelings by recognizing that they have been experienced by many, many others, that understanding and constructive help are available to you and your child and that you are not alone.

He is Ulysses, not Down Syndrome
by Desiree Lowit

Taken From: http://www.hipmama.com/

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.’