Our Glorious Mystery

By Teri Whittaker

I once told a friend that if our Mary Claire were a Mystery of the Rosary, she’d be a Glorious Mystery. As Catholics, you know we had to pass through the Joyful and Sorrowful Mysteries first, in order to get to the Glory. Here is the story of our journey.

The Joy

On Christmas morning 2000, my husband Thomas and I were out of town staying with my parents, sleeping on their fold-out coach in the living room. We both woke up at 4:00 in the morning and could not go back to sleep. With nothing else to do, Thomas turned on the T.V. There before our eyes was a most beautiful site: Christmas Mass celebrated by John Paul II broadcast on EWTN. Although we did not know at the time what was going on with the other, we both had a profound conversion experience that would lead us on a journey we could never have imagined.

I was a fallen-away Catholic in my early thirties; Thomas a fallen-away Protestant. After 14 years of marriage and two children, we were on the brink of divorce. EWTN saved our marriage. We watched and watched. We read and read. We took NFP classes in March and suddenly were blessed not only with an openness to life, but also a desire for the gift of more children. We were married in the Catholic Church in June and went on our second honeymoon, during which we conceived our “love child,” as we called her. Thomas entered the Church in September 2001.

Our Sorrow and the Seven Sorrows of the Blessed Virgin Mary

During this whirlwind in the early months of our conversion, two quotes from one of those books I had read kept coming back to me: Lent will be a time of suffering; and See how good is your God. He will make your greatest suffering your greatest joy.

The Prophecy of Simeon.

Lent started early for us that year. In October 2001, we learned that our daughter, due in March, had Down syndrome and related heart defects. I remember sitting in my OB’s office, tears streaming down my face as he told me that the life expectancy for our daughter was about 20 years. He already knew we would not have an abortion, and to his credit he did not once try to change our minds.

Other people, however, some barely even acquaintances, felt it necessary to suggest that we could save ourselves and our daughter a lot of trouble if I “just” had an abortion. One of these people was a close relative who considered herself prolife. When she said, “Maybe everyone really would be better off,” I reacted strongly. “Why would I ask some “doctor” to rip my little girl into pieces and throw her into a trash can just because our lives are going to be different than we expected? God did not create her for me to destroy.” I wish now that I had added, “I love her,” but, in any event , that was the end of that conversation.

Although I was anguished over my daughter’s prognosis, I cannot say I was surprised. I grew up down the street from Madonna Day School, a Catholic school for learning-disabled children, many of whom had Down syndrome. Something had always told me that I would one day have a child with Down syndrome myself. I had always had a special love and reverence for these children at Madonna Day School. Nevertheless, I worried: Will I love her the way I love my other children? Will I be a good mother to her, the mother that she deserves? Will I still be a good mother to my other children? Will others love her? Will she be happy? How much will she suffer?

I spent the next four months reading about parenting children with Down syndrome and driving to St. Petersburg, FL, for biweekly visits to a pediatric cardiac surgeon and a perinatal specialist at All Children’s Hospital. Our daughter, whom we named Mary Claire, had a complete AVSD, which basically meant that her heart was not formed properly. But her prognosis was good: the surgery to correct this defect was 93% successful. We got used to the idea of becoming good friends with doctors and nurses, and started considering moving back to my hometown so Mary Claire could attend Madonna Day School. In short, we did all we could to get ready.

The Flight into Egypt.

But nothing could have prepared me for the day of Mary Claire’s birth, February 18, 2002, the first Monday of Lent. We traveled again to St. Petersburg, leaving our other two children at home with my parents. The three of us were all alone among strangers. When they wheeled me into the operating room for the C-section, there was an army of doctors and nurses waiting for us. They all kept reassuring us that everything was going to be okay. I had always thought it would be, until then. It was the first time I had any real understanding of the precariousness of Mary Claire’s condition.

The birth went perfectly. Even at 25 days early, Mary Claire was a plump 7 lb. 14 oz. She was beautiful. The moment I laid eyes on her, I did not see her as my daughter with Down syndrome. She was simply my beautiful daughter. In fact, everyone was drawn to her. There was something different about her, and it was not Down syndrome. Her eyes did not have that glazed-over look that newborns have. She looked at us. We have heard of people who had a remarkable presence: Mother Teresa, Pope John Paul II, etc. Mary Claire was one of those people. Cooing like a baby bird and watching every move we made, she exuded love and tenderness. I could not believe that the Lord had blessed us with such a gift.

Now that the doctors could perform an echocardiogram directly on her heart rather than in utero, they discovered that, in addition to the AVSD, she also had a PDA which had to be corrected right away. Since the AVSD correction was an open-heart bypass surgery, they decided to go in from the side under her arm and just fix the PDA, waiting until she was the preferred minimum age for the open-heart AVSD surgery, 4 to 6 months.

The Loss and Finding of the Child

But during the surgery to correct the PDA, the cardiac surgeon was able to see just how malformed her heart actually was. The blood vessels were a tangled, mismatched mess, and there was no way to fix her heart without open-heart surgery. He came out of surgery and told us we had to decide right then what to do. It was an all or nothing situation. Either he had to leave her heart alone until she was a few months older, risking that her heart would fail, or perform the bypass surgery on a week-old newborn. He is one of the most highly respected pediatric cardiac surgeons in the country, and he did not think her defective heart would make it 4 months. Since he had literally held Mary Claire’s heart in his hands, we decided to follow his advice. After hours and hours of waiting, we finally got the good news. The operation was a success, and we could see our little Mary Claire soon. They warned us, however, of the swelling and bruising that would occur after the trauma of open-heart surgery. By the time we were able to see her, however, the doctors and nurses were astounded: no swelling and no bruising. She was recovering better than they had ever hoped.

A week later, Mary Claire was off all the “machines” except for the respirator, which was scheduled to be removed the next day. I was on my last visit with the perinatal specialist, telling her how amazing Mary Claire’s recovery was, when we got the call. The one thing the doctors had told us could happen, happened. Mary Claire’s valve had burst open, and they had to go back in for a second open-heart surgery on a two-week old baby. Her chance of survival dropped to 50%.

Mary Claire made it through the second surgery, but it took a terrible toll. The swelling and bruising were so bad that the doctors could not close her chest. She was a tiny little thing lying on an adult-sized hospital bed hooked up to a room full of machines. They had fixed her heart, but now we had to wait for the rest of her body to get over the trauma. We had to sit back and helplessly watch our little baby suffer, not even able to hold her because of all the wires and tubes. After a week of ups and downs, the doctors had to make a critical choice: close her chest and risk her other organs failing, or leave her chest open and risk an infection which would likely be fatal. They were divided in their opinions, but the surgeon decided to protect her against a possible infection.

Shortly thereafter, Mary Claire’s kidneys started to fail. The doctors tried dialysis, but the adult-sized tubes were too big and caused her condition to become dangerously unstable. The child-sized tubes that were used in Europe had not yet been approved by the FDA, so dialysis was no longer an option. Doctors told us to prepare for the worst. If her kidneys did not start working immediately, she would not make it. Her chance of survival then fell to 2%. We called the priest at the nearby St. Mary’s who had baptized her, who said that it would be morally permissible to take Mary Claire off life support. But I was not giving up.

I ran to the Church at 10:00 that night, banging on the doors until someone let me in. There was a Knights of Columbus meeting going on, and these dear men prayed with me for the life of my child. I begged the Lord to heal her and let me take on her suffering. I had prayed countless Rosaries, Chaplets of Divine Mercy, and novenas to St. Joseph and my patron St. Therese, and I knew They would save her. We would have an Easter miracle!

The Meeting on the Way of the Cross

After my visit, I returned to the hospital and ran into the mother of the nine-month-old baby boy in the intensive care unit next to Mary Claire. Her little Ryan was very ill, and she had not left his room in days and days. I sobbed that I could no longer stand not being able to comfort my baby. I thank God for this providential encounter, for it was the last time I would ever see her. Ryan died the next night. She told me to tell the doctors and nurses that I did not care what they had to do, but they would figure out a way for me to hold Mary Claire.

And that is what they did. The night nurse knew that Mary Claire’s best chance of survival was me, so she got permission from the SICU doctor on duty. It was an hour-long process, but she rearranged the wires and tubes so that I could climb into the bed and lie next to my baby.
The next day, miraculously, Mary Claire’s kidneys started to work. I will never forget the look on the face of the next SICU doctor on duty when he came in that morning. I could read his lips through the glass windows: “You have got to be kidding me!” We were all elated.

It was agreed that I should get into bed with Mary Claire every night, but only late at night when no other visitors were in the SICU, as this was not normal procedure. I will always cherish these moments with my dear little one. I told her to keep fighting, to tell Jesus, Mary, and her Guardian Angel to help her fight, that she wanted to live. I know without doubt that she could see Them, and I know without doubt that she understood every word I said. But after about a week of our nightly visits, Mary Claire was not getting any better or any worse. One night, by the grace of God, I suddenly had an epiphany. All along, Mary Claire had been fighting, for me. Yet I did not know what was best for “my” child. This precious little baby was, in fact, God’s child, and only He knew what was best for her. He could and would take care of her. The Good Lord gave me the grace to tell my sweet baby that I would be okay if I had to let her go. She did not have to keep fighting for me if she was ready. I trusted God to do whatever He knew was best.

The Crucifixion

A few days later, Mary Claire’s kidneys started failing again. It became too dangerous to move the wires and tubes around, and I was no longer able to lie next to her. We waited until every last one of her doctors said that there was absolutely no hope, and finally, reluctantly, they all did. We had been praying and crying for three days and nights at the foot of Mary Claire’s bed. Her body was beaten and bruised, her eyes were swollen shut, and her arms, too swollen to lie at her sides, were stretched out. We were standing at the foot of the Cross.

The Taking Down of the Body

On Holy Wednesday, March 27, 2002, the doctors finally removed all the tubes and wires that were artificially giving life to our daughter. For the first time since the first surgery, I was able to hold my baby in my arms. I was holding her when her she took her last breath and was taken to Heaven for all eternity.

I thank God for those wonderful doctors and nurses who so loved Mary Claire and fought for her against all hope. They had wanted an Easter miracle, too, but we were granted a miracle that I had not expected. The miracle had occurred in me. Mary Claire had been waiting for me to give her back to her Father. Through her intercession the Lord had filled me with an abundance of grace, and finally I surrendered my will to His. And our ever-loving and patient Lord had also waited for me: waited for me to offer my beloved child to Him, as he asked Abraham and the Blessed Mother to do so long ago. Then the Lord answered my prayer. He took away our daughter’s suffering and gave it to us.

The Burial and The Glory

On the day of Mary Claire’s funeral on Easter Tuesday, April 2, 2002, I cried until I had no tears left. Then I was filled with an elation that cannot be expressed. My daughter, my flesh and blood, was a Saint of God, with no suffering, no pain, no sorrow, praising His Name for all eternity and interceding for us until we meet again in Heaven. I realized what an incredible gift the Lord had given me, the enormous privilege of being in the presence of a great Saint and experiencing to some degree the glorious suffering the Blessed Mother endured during the Passion of her Son. And I remembered those words I had read only one year before: See how good is your God. He will make your greatest suffering your greatest joy.

Myths about a diagnosis of Trisomy 21...

I get emails or phone calls very often from families who have a new diagnosis of T21. Sometimes it is their friends or relatives who make the first contact. Then soon, the parents are emailing or calling. This has brought me a unique perspective of the entire process of receiving the news of Trisomy 21, Down syndrome, in utero. I would love to share some of the things that are said to me, and clear up any confusion.

Myth number 1: My child will die young, as individuals with Down syndrome do not live longer than the mid 20's. Reality: This is simply not true. Individuals are living well into their 50's and even longer, now that proper medical care is being given to treat heart or other life threatening conditions. Many individuals are capable of employment, living independently, and enjoy many hobbies and activites. See our T21 individuals in the news.

Myth number 2: Your child will suffer. Reality: Again, this could not be further from the truth. Many people in the world require corrective surgery. If your child needs surgery for any reason, the medical care given to individuals with Ds is wonderful. You can expect your child to do beautifully, and continue to thrive. While as many as 30-50% my have a heart condition, only approximately 5% will require open heart. The care of that 5%, by qualified pediatric cardiologists, is remarkable. The remaining 25-45% will have other less invasive procedures, or just be monitored. The cardiac care these days is absolutely amazing!! All other corrective surgery is also incredible. Any medical conditions can be treated today, unlike years ago when treatment was unknown. With proper medical care, individuals go on to live happy and wonderful lives!

Myth number 3: The physicians have told me that my child's Down syndrome is worse than other cases. Reality: This is simply impossible to tell in utero. Or even right at birth for that matter. Even children with many surgical needs have gone on to do amazing things. Karen Gaffney is an amazing example of an individual who needed much corrective surgery, and has gone on to do amazing things. She is not unique, this happens all over the world. I have met soo many families who have seen their family member through medical care, and the individual goes on to do beautifully in every way.

Myth number 4: The physicians have told me my child has a mild case of Down syndrome. Reality: While there are many different abilities for individuals with Down syndrome, a physican can not tell in utero or at birth, how a child will fare. Most instances where an individual has a more difficult time learning or behaving, is indication of a dual diagnosis. Typical children have this exact possiblity. If a child needs corrective surgery, that does not mean they will have severe developmental delays. Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.

Myth number 5: Your chances of having a child with Down syndrome increases greatly after age 35. Reality: Yes, indeed your chances increase. But let's discuss the word greatly. When we see the estimated rates in the books, you may see that at age 20 it is 1/1231. At age 25 it is 1/887. At age 30 it is 1/685. At age 35 it is 1/274. And finally at age 40 it is 1/78. So, yes, your chance does increase with age. And boy, when you put it that way, it sure does look like it increases greatly. However, if you were to look at these numbers in percentages, they look a little more interesting. Age 20: .08%. Age 30: .15%. Age 35: .36%. Age 40: 1%. So as one physician said to us, "Leave the guilt at the door", because at age 39, our estimated risk was 1/100. That means there was a 1% chance of having a child with Down syndrome. That means we had a 99% chance of not having a child with Down syndrome. He went on to add, "Who would think to not have a child if you have a 99% chance of this not happening?" Now, to set the record straight, this was the way he put it. We say, "Wow, what a miracle. We had a 99% chance of not having this gift from God. Whew, that was close!" We don't ever want to imagine what our life would be like with our our beautiful daughter. So indeed, the numbers do increase. However, when you look at it from a percentage view point, it sure makes this drastic rise, that many professionals talk about, seem pretty insignificant doesn't it? You have a better chance of having other things happen to you. In fact, there are a lot of ailments we all have a greater chance of having than the chance of being blessed with a child with Down syndrome. One additional point to add to this; 80% of all children born with Ds are born to mothers 35 and under. Many think this happens only to older mothers, since there is an increase. However, as you can see, the great increase is not as great as is told, so with the decrease in women having children at older ages, this makes the number of children with Down syndrome being born more often to younger moms. Numbers are interesting aren't they?

Myth number 6: Bringing a child who has Down syndrome into your family will be harmful to your other children. Reality: Again, just not true! In fact it is just the opposite. Your other children actually have a higher chance of becoming more compassionate and accepting of other people. The benefits have been a best kept secret until Dr. Brian Skotko did a study on the affects of having a sibling with Down syndrome. Another unexpected blessing. Read here for more information. Dr. Brian Skotko's study.

Myth number 7: There is a higher divorce rate for families who have a child with Down syndrome. Reality: While divorce can happen in any family, the studies are actually showing it is currently lower in the families who have a member who happens to have Trisomy 21. Perhaps it has something to do with the many lessons they teach us about life. Click here to see more on this.

Myth number 8: This will ruin your life. Reality: Continue down this page to see how this has affected the families who have chosen to write about their experiences. I am sure you will see that this has done anything but ruin their lives. It has indeed been a new journey for all of our families, and one that can require many graces at times. (Show me parenting that doesn't need more at some times!) But ruining our lives... that is simply not happening! An extra chromosome is all it is. The fear of that, is much more paralyzing than the reality. Enjoy your pregnancy! Enjoy your baby!

A precious gift from God, our little Ryan

Becoming a mother is truly one of the best gifts God could have given me. Deep in my heart it’s something I’ve always known I wanted; however, I got very busy with education and my career for many years. So, when I found myself getting married at the “advanced maternal age” of 36, I knew there was a chance my dream of motherhood may be different from what I imagined. Our first son, Evan, came into the world when I was 39, and he is a perfectly beautiful and rambunctious little boy. I loved the whole experience so much, I wanted nature to takes its course and give him a sibling. My siblings have always been an important part of my life.

When my son was nearly 2, I miscarried twins (early in the pregnancy), and my heart ached. Several months later, I had “that dizzy feeling” again, and sure enough the pregnancy test came up positive. I was ecstatic, yet scared—how would I handle two children, what if something went wrong? I felt very blessed though--could I really be fortunate enough to be pregnant again . . . and at the age of 42? Sure, why not? My life has generally gone the way I wanted it to, so I just knew this was going to be a perfect, little girl and complete our family—one boy and one girl. That way I can experience football games AND dance recitals and all that comes with each gender!

My husband and I agreed the alpha-fetoprotein blood test would help us know if the pregnancy was healthy, and of course, we wanted to prepare ourselves if there was anything out of the ordinary. Well, it indicated I had a one in 36 chance of having a child with Down syndrome. When the ultrasound doctor told us our baby has an “absent nasal bone” (one of the markers), we sobbed, and I told him I needed to know for sure--do an amniocentesis; something I never thought I’d do. I did not even feel the needle go into my womb, and I thought, please don’t hurt my precious baby who moves so lovingly inside me. I was only 18 weeks along, and I’d been feeling him amazingly since around 12 weeks. How could there by anything wrong with my tiny baby who kicks so strongly in my womb?

The genetic counselor called a few days later to tell us our baby has an extra chromosome, Trisomy 21. How could this be happening to us? How can I handle all the extra doctor appointments and therapy sessions our child will need? I don’t want to be “those people” in the neighborhood with the child who has disabilities! This is not in my plan. Boy, did I have a lot to learn. Now, I know, we are NOT “those people” with the child who has Down syndrome. We are still the same people, and I can honestly say each family member, friend, neighbor and co-worker has been nothing but accepting and loving towards our little Ryan. Everyone who meets him is touched by our son, and we are stronger knowing we are giving him the best life possible. He gives us joy and a special peace, just like my obstetrician told me he would.

Little Ryan Thomas came into the world nearly 3 weeks early weighing 5 pounds 12 ounces. I was knocked out since the spinal was not working during my c-section, so unfortunately I did not hear his first cry. However, when they brought my darling baby over to me, all swaddled up, one look at his sweet face, and I was in love. I told everyone, he’s beautiful isn’t he. He is absolutely beautiful. He was asleep and so angelic. As I looked at his tiny little body and held him close to my heart, I realized completely, he is a gift from God and deserves all the world can offer him. He has 10 little fingers and toes, bright eyes, alert ears, a brain, pumping heart and feelings just like any other person.

The pediatric cardiologist called me in my hospital room 12 hours after he was born and told us wonderful news. His heart is normal. So, one major hurdle was behind us. Due to his low muscle tone and low birth weight, he needed oxygen for about 2 months. It was a pain and affected nursing, but it was what he needed to grow and be healthy. He is now 12 months old, and we’ve learned so much. All of the appointments keep us busy, and we work them in like we work in anything else in our busy schedule.

Ryan is a perfect little boy who happens to need a little bit of help in some areas. I know speech will most likely be his biggest hurdle, so we pay special attention to it. He goes to physical, occupational and speech therapy once a week, and the therapists are very helpful. I love it when they tell me how strong he is in so many areas, and of course it breaks my heart when an evaluation indicates a skill is “out of normal range.” I remind myself we just need to give him more time! He recently cut his first tooth, and crawling is right around the corner, which will be wonderful to see. He is eager to move and grab his brother’s toys! He has a sweet disposition, contagious smile, and keeps on a very regular eating and sleeping schedule. He goes to bed easily around 8pm and wakes up at 7am cooing and “talking.” It’s a wonderful sound to hear throughout the house.

God has blessed me with two beautiful sons that give me great joy and pride. While we were expecting Ryan, our pastor reminded us to try and not look too far into the future since we do not know God’s plan, and he often speaks about how only God can make a mother. Now that my son is here and I can hold him, play with him, and look into his eyes, I know Ryan is exactly the child I was supposed to have. I cherish my motherhood, and I’m honored to be the mother of both my sons.

Ryan's Mom~ Mary Lynne

What Blondel Taught Me

What Blondel taught me – and I only learned 20 years later.... When I studied at university 20 years ago we read Blondel. Blondel was a French Catholic philosopher. One of his major works is "L'action". Blondel studied the connection between thought and human action as a consequence of thinking. So, not only what you think or believe is important, but also how a person acts as a result of their thinking.

One of the professor's assistants, Laura R., a young lady from Italy, with a very sharp accent, continuously repeated during class,"This is what Blondel teaches you: you have to act to understand." I, for myself, thought this summary of Blondel's ideas was odd. I mostly had to read to understand, to listen and perhaps,yes, this is also an action, but still quite abstract, I had to write to understand. I am definitely not very interested in sports. I can swim, ride a bike and I like to go for long walks, but I definitely never trained in any sport. So, sports did not give me a practical clue to Blondel. I sometimes found Blondel and the assistant were right, when I was cooking. Yes I, had to cook to understand the recipe. I could not imagine what the outcome of some recipes would be.

When we had Agnes and Josephine I forgot completely about Blondel and the assistant. We explained to our daughters what we thought they had to know. And both understood easily,as a result, Agnes is as theoretical as her parents, and while she is probably able to order spaghetti in Latin, which nobody will understand, she will fall over her feet before she gets her plate to the table. (I exaggerate.).

Then came Cecilie, and now I think about Blondel and Laura R. almost every day. I can recall Laura's accent and I love these memories. Cecilie has to act to understand and the best thing is, she understands really, while she acts. I sometimes fear, that Agnes only gets the idea of a thing, while Cecilie really gets the thing itself. Frankly speaking, I sometimes wish, that she had more capacity to understand abstract ideas, but if I am honest to myself, Cecilie, so far, lives happily without that understanding.

Cecilie acts to understand language, she acts to understand colours, she acts to understand numbers, she acts to understand her world. And it is a joy for us to see how differently, but still successfully and sometimes more intensely she gets along.

Acting makes teaching easy for Cecilie and us, when it comes to reading and speaking, because we have early reading. It makes the world of colours and numbers (we talk about 1-5) interesting, because we have differently shaped and coloured wooden blocks, that we match, select, count, whatever.

Cecilie's approach to understanding her world makes life more difficult, because abstract things like special times of the year (birthday, spring, summer, autumn, winter or advent, christmas or easter) have to be lived and not explained.

But that again makes life for us joyful and interesting. Yes, we have been to see farms with Agnes and Josephine because everybody did and it was nice for them to see real pigs, cows etc. They knew before which animals would be on a farm and which would not. But Cecilie goes there to learn the idea of a farm and which animals live there.

While, when Agnes and Josephine were small our constant thought was, which books we would have to buy for them to learn more, we now discuss what we will next DO with Cecilie. She also loves books, but – at least so far- they are not as important for her as they were for her sisters. Yesterday we spent the afternoon in the woods behind our house, we talked about the yellow, red and green of the leaves because she is just approaching colours, we sang about autumn and our Miss was sitting on the ground, covered by leaves enjoying herself. I am sure she understood what autumn is about. We'll probably go out side, when the storms come in November and we´ll learn more about autumn.

20 years ago I liked our philosophy class, I liked Laura's teaching (not her testing) and I liked Blondel, because his approach was different from what we had read before. Today I try to understand.

Written by Cecilie's mom~Friederike

Sal's Story

Our journey with Down syndrome began in January 2007. Already blessed with two beautiful, healthy children, we were expecting our third to arrive in July. We were not expecting that fateful phone call from the Ob-Gyn's office. My AFP blood work revealed an increased chance for Down syndrome. I was shocked and devastated; my initial reaction is not one that I am proud of. I was terrified and very angry. I worried that having a special-needs sibling would somehow impede Sabrina and Michael's future. I panicked that my husband, who had suffered with bouts of depression, would not be able to handle a less than perfect child. Mostly, I was afraid of the unknown. I had very little prior knowledge of Down syndrome and no experience with special needs children. I did not consider myself qualified for this task.

I was reassured by many that the test was likely a false-positive. After all, I was only 30 years old so this was surely a mistake. Against my husband's wishes I decided to have an amniocentesis. Mike was prepared to welcome whatever child the Lord gave us, and he didn't like the risks associated with the amnio. But I was adamant; it was the only way I could be sure of the baby's diagnosis and I was convinced that I HAD to know, I had to prepare myself.

Well, it turned out that God didn't want me to know just yet. As I lay on the table and the perinatologist began the amnio, I prayed the Our Father repeatedly. Thy will be done, I thought. It's really hard to let go and pray that way, to stop my own request and to simply accept God's plan. But it was at that moment I heard God's voice clearer than I had in my entire life: let go of your fear and trust me. Thy will be done, I prayed, just give me the strength, Father. After two tries, my amnio was unsuccessful- the doctor could not withdraw any fluid. Apparently, this is a very rare situation because my doctors were puzzled as to why she could not collect any sample of the amniotic fluid. As a certain feeling of peace washed over me, I decided not to repeat the procedure. Thy will be done, and its time for me to trust God.

I decided to enjoy my pregnancy. We remained very hopeful that the baby would not have Down syndrome as my sonograms remained inconclusive. I did not think about the DS or in any way try to prepare myself. Unbeknownst to me, God was working to prepare me for my son. Before my diagnosis I had never encountered anyone with Down syndrome. I had a very outdated perspective of the condition and had no knowledge of what people with Down syndrome were able to accomplish. However, the Lord put two very special children in my path during my pregnancy. One was a little boy with DS who joined my daughter's soccer team. I could not take my eyes off this handsome, spunky boy! I watched his proud parents cheer and take pictures and thought, gee, that doesn't look so bad. I also met an amazing teenage girl with DS who took ballet at the studio where my daughter studied ballet. She drove, had friends, and danced as beautifully as any of the other girls in about ten different performances at the recital!

We decided to name our little boy Salvatore, a strong, old-fashioned Italian name. His arrival was three weeks earlier than expected. At a routine sonogram on June 18, 2007 the perinatologist was alarmed to discover that Sal's heart rate had dropped significantly due to fluid in one of his lungs. She sent me directly to the hospital for an emergency C-section. I was allowed only a quick glace at my new baby boy before he was rushed off to the NICU. Mike and I waited for what seemed like hours to speak to a doctor. When the neonatologist arrived he brought the good news that the baby was breathing on his own and that once drained, the fluid would probably not collect again in his lung. He also told us that he suspected Salvatore had Down syndrome.

That first night in the hospital was a very difficult night. I cried and prayed all night long. But the next morning, I got to hold my little Salvatore and my strength was restored. I fell in love with that baby instantly, and so does everyone else who meets him.

Sal is now 7 months old and he is the absolute joy of our family. We are truly blessed that Sal has not had any medical concerns, and he is progressing beautifully with the help of physical and speech therapy. I need not have worried about my husband; Mike lights up at the sight of Sal and affectionately calls him "the happy maker." Sabrina and Michael are completely in love with their little brother, and I'm now convinced that having Sal in their lives will truly enrich them as they mature. As for me, I learn a little more everyday. I’m learning from doctors, therapists, research, new friends in the DS community, but mostly I'm learning from Sal. He is the hidden treasure I never expected.

Written by Sal's mommy~ Kristy

An Answered Prayer

Months before Erin was born, our family started adding in a little extra prayer when we prayed our family rosary. The prayer was this: "Lord, help us to love better". It is a simple prayer, but one that is easier said than done. My husband had taught our children that most of the little difficulties in their lives could be improved if they could just learn to love others better. He had started praying that little prayer himself, throughout his day, as well. Of course God answers all of our prayers, in one way or another, whether we know it or not. For our family, He answered this little prayer of ours in a very profound way.

On the first day of March, 2007, our seventh baby came into the world. Erin Camille was a beautiful baby. As we met her for the first time, I noticed, at first glance, that Erin had slightly slanted eyes and a very small button nose. As I held her for the first time she seemed a bit floppy. I was pretty sure that she had Down syndrome. I remember putting that little bit of information into the back of my mind, even in that split second, because I wanted to enjoy her first, and deal with the Down syndrome second. I remember being amazed at how calm I was even when Erin was not breathing. The doctors and nurses quickly took her over to the warming bed to try to get her breathing. With some vigorous stimulation, she was soon breathing fine, but still not crying. In fact, the room was eerily quite. My husband kept glancing at me, wondering why the room was so silent. The doctors and nurses were whispering and there was not a single smile in the room. This was not at all how we remembered our other six joyful births. Finally, after several minutes, my OB doctor kindly explained to us what I already knew. Erin had characteristics of Trisomy 21, and he asked our permission to do the genetic testing which would confirm the diagnosis.

As we took in this new and unexpected information, we had many questions. I remember being most concerned with how my other children would handle the news. I wondered how difficult it would be for them, if they would feel disappointed, and how a new sibling with a disability would affect our family. My husband worked through his emotions with lightning speed; in the course of about 10 seconds he felt sad, then guilty for feeling sad, and then incredibly blessed. He felt Jesus was in the room. As these thoughts raced through our minds, it became clear to us how much we did not know about Trisomy 21. One thing we knew for certain, however, was that God was speaking directly to us through the gift of our beautiful daughter. We knew the odds of conceiving a child with Ds was only about 1 out of 100; even in my "advanced maternal age" (I was 39). With those odds we knew we had won some sort of lottery. While we didn’t know what it all meant at the time, we did know that God had planned for Erin to join our family.

Long before the day of Erin‘s birth, we had internalized our beautiful Catholic teaching that each child is made in the image and likeness of God. We believe with all of our hearts that Erin was created with an extra 21st chromosome, on purpose, in His perfect plan. We believe that God does not make mistakes. When you believe this from the bottom of your hearts, you can then celebrate your child, born with Trisomy 21, as you would any of your other children. And that is exactly what we did, even as we stepped into a whole new unfamiliar world.

On the second day of Erin’s life she had a "dusky" episode, which means she turned slightly blue. This little incident landed her in the NICU. On top of that, she was also having some feeding difficulties. For a mom who has loved nursing her six other babies, this was a huge disappointment. We soon found ourselves surrounded by silence or words of unwelcomed pity from well-meaning medical staff. We spent a lot of time consoling them. I started to wonder how in the world I was ever going to feed my baby while keeping up with the demands of our household, which included home schooling the other children. By the third day after Erin‘s birth, I was exhausted. After no sleep, after not being able to hold Erin because she was hooked up to monitors, after hearing virtually nothing but words of pity from hospital staff, after meetings with various therapist who would explain to me how Erin’s development would be delayed, and after having no end in sight as to when she would be leaving the NICU, my emotions hit rock bottom. I felt completely overwhelmed. In tears, I turned to my husband, wondering how I was going to climb the mountain that was in front of me. It was at that moment that God spoke to me in a very real way. In this worse moment, I heard a little knock at the door of my hospital room. Without waiting to be let in, a little elderly lady came shuffling into the room, holding Jesus in the Blessed Sacrament. There He was… Body, Blood, Soul and Divinity, in her little hands. This kind, little, elderly woman had come to give us Holy Communion. At that moment I knew everything was going to be fine. He was there, with us, walking us through every step of the way.

After our week long NICU stay, we settled in at home. I laugh now at the worrisome thoughts I had about how our other children would react to Erin. The only immediate problem we had to deal with was the bickering over who got to hold Erin first. I soon realized that young children do not see disabilities. All they wanted to do was love their new sister. Because of Erin, our children have grown in ways we could never have taught them ourselves. They not only love Erin dearly, but they want to defend her and help care for her the rest of their lives. She has taught them how to love unconditionally at a young age. Instead of waiting and watching for each stage of her development to emerge naturally, my kids have learned to be therapists, beckoning their sister’s development along with great cheer and enthusiasm. They experience the little things with joy. I’ll never forget when Erin signed "bottle" for the first time. This simple task, which would seem so ordinary for others, brought shouts of joy from my children because they had been intimately involved in coaxing this little milestone along. Her accomplishments are their triumphs. They take such pride in Erin and God has indeed blessed them with their sweet sister.

As Erin neared three months of age, we discovered that her heart came with a little extra something too - a hole. At least we finally had an answer for her feeding difficulties. It was a very intense summer, with many heart medications and doctor visits. As Erin lost all energy to take a bottle, we learned how to feed her with an ng tube, which is a temporary tube that goes through the nose and into the stomach. At one point, I was spending six hours a day trying to get enough calories into her. In our difficulties we once again relied on, and took comfort in, our Catholic faith. We prayed countless memoraries, I sang the rosary to Erin as I attempted to feed her with the bottle, and we became friends with the late Dr. Jerome Legeune, the Catholic geneticist who discovered Trisomy 21, and whose cause for canonization was started by his friend, Pope John Paul II.

On September 19th, at six months of age, Erin went off to open-heart surgery, while we, her parents, went on a powerful spiritual retreat. Both were located at Children’s Hospital of Milwaukee. Once again, God was good. While He was leading the surgeon’s hand, He was also leading my husband and me closer to Him. Our first meditation took place in the waiting room of the OR, and the remaining meditations took place on the PICU floor. It was not our favorite retreat but it was certainly the most powerful and the most rewarding. The main spiritual exercise for this retreat consisted of handing our six month old baby over to a complete stranger who would hold her heart in his hands. Through it all, we relied on these words: "Jesus, I trust in you." Erin came through the surgery with flying colors and remains a very healthy baby, who eats like a champ, to this day.

As we celebrate Erin’s first year, I think of everything this little girl has taught us. While we don't know what the future will hold, we do know that Erin will face her accomplishments and challenges in her own way and in her own time, just as our other children do. We are certain that as time goes by, Erin will continue to teach us more than we will teach her. We are truly thankful for the gift of Erin! By the grace of God, she has transformed our hearts with more faith, hope and charity than we knew before. We have learned that to accept our daughter just as she is, with Trisomy 21, is also to accept our real selves just as we are, with all of our imperfections. Most of all, Erin is a beautiful child of God, and an answer to our little prayer…"Lord, help us to love better".
Written by Erin's mom~ Kris

So Beautiful, So Precious, So Small

In hindsight, my husband and I always knew that if any of our siblings were to have a child with special needs, it would be us. Abby, our first, was born to us so beautiful, so precious, so small, in the late afternoon of October 2003. In the wee morning hours, when my husband and I could finally enjoy her all to ourselves, I giggled and said, "Abby looks like she has Down’s eyes." We laughed it off and never thought about it again. Until six hours later, when the pediatrician came in to tell us his thoughts, findings, and to ask our permission for genetic testing.

I was devastated. My little girl. As I wept for the child I thought I had, my husband stepped up and took on the initial challenges that would face our little one. He told all of our family and friends of Abby’s diagnosis. And once stated, he went on to say that we do not wish to hear negativity surrounding the diagnosis. If anyone would like to talk to us regarding her diagnosis, or progress, they were more than welcome. He expressed our hopes and dreams for her, to thrive, to be loved, to be cherished for she was an angel sent to us. I honestly don’t know where my husband found this courage or mindset, but once established, nothing could make him waver. He was my rock. I have to laugh now, he told everyone in those first few months that she will go to college, she will have a career and if she wants, she will have everything her heart desires: everything. And you know, anything that she chooses to try, she is given that opportunity.

For me, it took a great time of healing. My healing came through prayer and through the positive example set by my husband. He was there to protect me, to protect Abby, and to offer his prayers in the health and future of our beautiful, precious little girl. He pulled us through, he brought us closer, and He gave us the greatest gifts! Together, as a united front, my husband and I are Abby’s biggest advocates. And together our faith has been firmly established and built upon in a trusting, loving, and caring sacrament of marriage. Without my husband, I truly shudder to think where Abby and I would be today…

Written by Abby's mom~Eli

A Special Mother Is Born

“God would never send us a special child”, I mused, caressing my pregnant belly, “our marriage isn’t strong enough.” I was deliriously happy to be pregnant at 39, for three of my five pregnancies had ended in miscarriage, and my younger daughter, Isabella was an independent four year old. Last summer, I had returned from a homeschool conference with an aching heart, longing for a translucent-skinned newborn nuzzling my neck. When my pregnancy lasted past my danger zone, I was ecstatic, and refused the triple screen blood test.” There’s nothing you can tell me that will make me end my baby’s life”, I told the doctor, putting the subject of prenatal diagnosis to rest. Or so I thought.

Five months along, I was at Sunday Mass, absent-mindedly watching the parishioners with Down Syndrome from a local group home when, from out of the blue, an internal voice said, “You’re going to have a child with Down Syndrome”. Astounded, I tried to dismiss it as a hormonal fixation, until, in line for Communion, the voice ‘spoke’ again, “I want you to accept this child as a gift from My Hand, when you receive Me.” Now I knew there was no escape. Jesus had a call for my life. How would I respond? I choked, “yes, Lord, as long as you bring my husband along for the ride”, and received His Body in tears.

My husband Francisco was floored, thinking that I had finally gone over the edge, and I myself began to doubt this message, since there had been so many normal sonograms. “And besides, Lord, I’ve seen these mothers of special children, they’re saints, you could NEVER compare my impetuous personality with theirs.” That, I decided, was the clincher. God gave special children to saintly women. I was safe.
Never tell God is what He is capable of doing. During the remaining months, I struggled with self-pity, and even, for one instant, regretted my pregnancy, while unknown to me, His grace was molding my heart.

The time came for little Christina Maria’s arrival. At her birth, the delivery room fell deathly silent. Alarmed, I glanced over at the pink, wriggling baby in the isolette, and asked “What’s the problem?” The doctor didn’t respond. Francisco tried to tell me in Spanish that Christina was a “mongolita” (Spanish for Mongoloid), but I didn’t understand, so, on the way to my room, the nurses circled my gurney, and said, “We regret to tell you that this child has symptoms consistent with Down Syndrome”. I was ready with my response, “this child will never take drugs, go Goth, or shoot up a schoolroom. She’ll learn the Faith, and keep it her whole life. She’s my best chance at getting a daughter to Heaven, and I consider her a special blessing from God”. My answer came from a book, Pregnancy Diary by Mary Arnold, which I had read regularly for inspiration.

But words are cheap. What cost me dearly was watching the other newborns in the nursery and comparing Christina’s weakness to their vitality. I resented the happy chatter of the other Moms in the ward. I was haunted by dark thoughts, and self-pity took hold of me.

Just then, the phone calls began. My mother and homeschooling friends had summoned support from around the country, and I was encircled in love. I spoke with a mother from my parish who told me what it was like to raise her youngest daughter with Down Syndrome, and answered many of my anxious questions. Another friend, the mother of 11, sent an Elizabeth Ministry package for special babies, with the CD and book set entitled, Sometimes Miracles Hide, Stirring Letters from Those Who Discovered God’s Blessings in a Special Child by Bruce Carroll. That was a constant companion, reminding me that regardless of how inadequate I felt, God had indeed chosen me to mother Christina, and that she would be my means of attaining holiness down the road. God’s favorite road, the Via Dolorosa.

On Mother’s Day, at Christina’s Baptism, we shared that song with the over 100 guests who crowded the Church. My heart swelled with gratitude for God’s choice of my family to raise her, and when her Godmother asked what she should pray for, I didn’t ask for Christina’s cure from Down Syndrome. I was beginning to understand that her ‘condition’ was a blessing, not a curse. Perhaps, as Fr. McCartney had said, Christina pities us, for not having the purity of heart to see what she sees.

After four years of specialists, therapists, and conferences, our family has grown in acceptance of her halting development, yet often, we are awed by Christina’s perception of that which escapes us. One day I brought her with me to Adoration. Entering the chapel, she waved enthusiastically to the Monstrance and called, “Hi, Jesus!” I was congratulating myself for having communicated that Jesus was present, although unseen. She promptly put me in my place, for, as we were leaving, she waved again, saying, “Bye Jesus!” as if He was as visible as Grandpa standing in front of her!

You know, I believe she did see Jesus, and what’s more, they already have a friendship.

This article was published in Faith and Family magazine in May/June 2007.

Written by Christina's mom~ Leticia
Catholic Down Syndrome Society

She Is Who God Made Her

When I was ten years old, my family moved to South Carolina. My mom was expecting and due in three weeks when we moved in. We had no idea what was in store for us.

On the day Emmy was born, I woke up at 6:00 AM. I was very excited, knowing that my parents were going to the hospital to have the baby. We waited patiently for the good news of our new sibling. We just sat down to eat lunch, and my dad called to tell us that the baby was born. We were so excited! I think I was the most happy girl in the world. I had always wanted a sister, and now I finally had one. A little while later, my dad called again to tell us that he was coming to pick us up and bring us to the hospital. When he got to the house, we were all ready to get in the car, but he said we had to talk first. The first thing that went through my mind was, "Is my mom ok?" My dad reassured us that mom was fine, it was the baby. He said that the doctors think the baby has something called Down syndrome. At that time I did not know what to think. I knew a little about Down syndrome, but so many questions kept going through my mind. What's going to happen? How is this going to affect me? We got to the hospital and went to the room. We said hi to our mom and the nurse brought Emmy in. My dad asked me if I wanted to be the first one to hold her. I said yes. My dad put her in my arms. She looked fine. She didn't seem any different than any other baby I have seen. I started to feel a little better.

My mom and Emmy came home two days after. I loved Emmy so much, but I was still scared for us and for her. Within the next few months I learned and changed so much! I learned the three different kinds of Down syndrome. I learnd the signs that show that someone has Down syndrome. I learned more than any book could teach me. I learned to accept all things even if they are different. It's amazing to watch Emmy grow and learn. It's different because every little milestone that you wouldn't think much of with a typical baby/kid is so much more special!

When Emmy was four months old, we found out that she had to get open-heart surgery. Then I started to get scared again. I loved her so much, I did not want anything to happen to her. All I wanted to do is be near her. My parents let me go with them to almost every doctor appointment, because I did not want to stay home wondering if she was going to be ok. We had to wait till she was six months old to have her heart fixed.

When the big day finally came, my aunt came to take care of us. We walked all around the beautiful city of Charleston to pass the time. When we got to the hospital, they said the surgery was successful. The next day we got to see her. It was really hard to see her laying there all hooked up. She did not look like Emmy. Everytime I saw her, I wanted to leave. Every time I left, I wanted to go back and see her. We slowly watched her come back to her joyful, spunky self. That night my dad brought us back home. The next day, we found out that Emmy was well enough to come back home! We were so happy. Our Grandma helped us make a cake and helped us decorate the whole house to get ready for the celebration. When they arrived, we ran to the car. We saw Emmy, she was happy and surprised to see us!

Emmy changed me in so many ways. I don't know how somebody could not see the love and joy in her as she walks around in her "cute shoes" and a purse on one arm and a baby in the other! I would not change one thing about my sister! Emmy would not be Emmy with out Down syndrome. She is who God made her!

Written by Emmy's big sister~ M (13 years old)

My Baby Sister With the Designer Genes

Erin came into the world on a snowy Thursday evening, March 1st, 2007. I was thirteen, almost fourteen, and was woken up, at about two in the morning, to the phone being paged. Both cordless phones were in my room. My dad came in saying, "There they are"...I said, "Dad it’s two in the morning! What are you doing looking for the phones AT TWO IN THE MORNING!?!?!" Dad said, "Just go back to sleep, I'll wake you up if something happens." Obviously I was completely oblivious (it being the hour it was) that my mom's due date was in about a week, and that she had been having some contractions the past day. I almost went back to sleep. Just as I was about to doze back off, it hit me! "AHHHH!!!" I ran to the top of the stairs where I sat and listened. I heard my mom on the phone, "...yeah, my water broke about half a hour ago..." And I'm thinking, "Oh my goodness! The baby is going to be born in the living room!!!” I was still sitting at the top of the stairs when my mom came up very casually. I said "YOU’D BETTER HURRY!" She calmly said, "Oh, I'm going to take a shower and pack some clothes.” So she took her shower and I helped get the clothes together. They left at about three A.M. I didn't sleep the rest of the night.

Later that morning, my siblings finally woke up. I told them what was going on and they all went crazy! I sent out a couple emails asking for prayers. At about eight that morning my aunt and uncle came over with some food and excited spirits. Hours passed.

My aunt came back that afternoon and brought my siblings and me to our cousins’ house.... still no baby. Then at about 7:45 P.M., my dad called and asked to speak to Molly Grace, my 3-year-old sister. Molly Grace announced to the excited room of eleven curious kids and my aunt and uncle, "It’s a girl...her name is Erin!" Everyone was so happy and a little surprised; Erin was the seventh kid and sixth girl in our family, with only one boy in the middle! Everyone had been thinking it was going to be a boy. I made a couple calls to my friends, and my grandparents in Michigan, telling them my mom was doing fine and Erin was healthy, weighing 7 pounds 3 ounces. I couldn’t wait to see her!

When my dad picked us up at the cousins the next morning (about one hour later than he said he would), he said that Erin had turned blue and was rushed to the NICU earlier that morning. Therefore, we probably wouldn’t be able to see her that day.

On the ride to our house the car was filled with questions: "Does she cry a lot?"..."Does she look like me?"..."What color eyes does she have?" I noticed my dad got a little teared-up, then he said, "Erin is a very patient baby”. Right when he said that my heart was crushed! Without being told, I knew Erin had Down syndrome. I had never thought that my new little sibling would have Down syndrome, or anything like it. I would have been happy at that moment to have a healthy, 7 pound 3 ounce sister with light brown hair. But I felt mad and upset...I didn’t want to see her or get to know her. I didn’t want her to be my sister. I cried and cried and cried.

After we had eaten (me eating very little) that morning and dropped my siblings off at my cousin’s house, my dad and I went to the hospital. When we got to the hospital we went to my mom’s room and then to the NICU. When we walked around the corner into the room, I saw there were four babies in there and I wondered which one was Erin. My parents walked straight to the crib with a big heat lamp over it. There was Erin. I saw that she was connected to all kinds of monitors and oxygen tubes. Then I took in her eyes, slanted slightly upwards at the sides, her little button nose, and her mouth with a BIG pout. Her bottom lip was sticking straight out in the biggest pout I had ever seen. The nurse said with a bit of friendly sarcasm, "I don’t think she likes it here”. If her pout could talk it would say, with a sassy little voice, "Pick me up!!! I don’t like being here with all these monitors, and especially with this oxygen tube, UGH!" We started talking to her and I noticed her pout gradually got smaller.

When I held Erin for the first time she just melted my heart. All the anger and unwillingness to accept her just melted away. I was trying so hard not to cry with all the nurses there. She was so cute and helpless. At that moment I was, and still am, determined to help her the rest of my life.

Fast forward to today. Erin is six months old (weighs 11 lbs 7 oz) and is as happy as ever!!! So are we!!! She is very alert and affectionate, and she babbles, “da da da da da”. She does all the things that typical babies do; she just may do them a little bit slower, at her own pace. She especially loves for us to sing to her! She likes any song, sung with any voice. And never once that I can remember, since she has learned how, has she not smiled back when one of us smiles at her, whether it is one of her smiles so big that her eyes are squinting, or just a little grin when she is about to doze off. Never once since I held her in the NICU did I wish that she did not have Down syndrome.

On Sept. 19th, Erin is going to be having open heat surgery to close up her VSD. It just breaks my heart to think such a sweet little girl has to go through something like open-heart surgery.

I have felt guilty about how upset and selfish I was when I first heard that Erin had Down syndrome. I now realized that I just needed to learn a little more about Down syndrome. Now I know that when God gave my sister an extra chromosome…...he was just showin’ off! LOL! Erin is such a blessing. She is the light of my life. I know that God formed her, just as she is, and I know she’ll touch many lives as she grows up……just as she has mine.

Written by Erin's big sister~ Moira

Raising Joey

It was October 2005 that we found out that Joey has Down syndrome. There I was, only a couple months pregnant, pregnant with our first child, and went in for my First Trimester ultrasound. The ultrasound technician was such a pleasant lady showing me different parts of my baby's body when she suddenly got this look of concern on her face. She finished up the ultrasound and left the room. I laid there on the bed confused, "why did she make a face like that? I heard my baby's heartbeat and saw it moving, what could be wrong?" She came back in with the doctor a couple minutes later and the doctor started doing another ultrasound. He went directly to the neck then the face. The doctor looked at me and told me that my baby had a cystic hygroma on it's neck which was a fluid filled sac and that it's nose was smaller than most babies' noses at that gestation. I was so confused, he then proceeded to tell me that there was a good chance that my baby has Down syndrome and that I should go talk to their genetic counselor.I laid there on the table confused and started to cry. I knew when he told me that, that my baby had Down syndrome. I just had a feeling. I was shaking and didn't know what to do. The ultrasound technician led me into the genetic counselor's office. I sat there in the chair and waited for her to come in. Once she arrived, she proceeded to advice me on getting my baby tested through CVS or amniocentesis. She also advised me that if my baby did have Down syndrome that I had the option of terminating my pregnancy. I didn't even have the diagnosis yet and they were already talking about ABORTION! There was no way I would ever abort a child. I told the counselor that I needed to go home and talk with my husband before I made any decisions on testing.

I left with a pile of various articles on genetic testing, and down syndrome. When I got out to my car, I went into hysterics. This was going to be our first child and it most likely has down syndrome. I thought that only older woman had babies with DS. I was only 24 years old! I called my boss since I was suppose to go back into work and told her what happened. She told me to go home and take it easy. Then I called my husband and told him, then called my mom and really lost it. I finally calmed down enough to drive home. I walked in our house and was greeted by our dog. I sat on the couch and I don't think I did much else until my husband got home. We sat down after he got home and talked. We knew the risks with genetic testing but since this was our first child, we decided to go ahead with the CVS. I went in around the first of October and had the procedure done. And BOY DID THAT NEEDLE HURT!!!It took less than a week for the results to come in. I had just gotten home from work when the phone rang. My husband wasn't even home yet. I looked at the Caller ID and saw that it was my OB and he was calling from his home. I knew before I picked up the phone what he was going to tell me. He told me that my baby had Trisomy 21 and that it was a boy.

I hung up with the doctor and sat still for a minute before I reacted. I went into complete hysterics. I was uncontrollable. I tried calling my husband, no answer. So I called my mom clear out in Ohio. She made me call my in-laws right down the road so I wouldn't be alone and then tried to calm me down. I finally calmed down a little and got my husband on the phone. In the mean time, my father in law and sister in law came over so I wasn't alone. My husband finally got home and the four us of us sat there and didn't know what to do or say. I got online and started looking up websites on Down syndrome.

A huge part of what got me through Joey's prenatal diagnosis was my faith in God and knowing that he would lead me through whatever was going to happen. After my doctor called and told us that Joey has Down syndrome, I sat and prayed for an answer. The answer I got was that Joey was meant to be ours and that things were going to be just fine. The more I thought about it, the less upset I was and I started getting excited, then I realized, "IT'S A BOY!!!" We wanted a boy so bad and we were getting him! Down syndrome or not, it was going to be a boy! We had picked out the name Joseph Patrick after my father in law. He had actually asked me if we were still going to use his name, I asked him if he still wanted us to and he said, "of course!"

My father in law has always been our number one supporter and adores Joey with all of his heart. I couldn't ask for better in laws. I love them dearly! I started reading more and more on Down syndrome. I wanted to educate myself, along with our families as much as I could before Joey was born. I read every article I could find and bought every book I could find. (Of course, I look at those books now and laugh- most of the time, they're useless. All of our children are so different, the books barley did any good. I found the Connecticut Down Syndrome Congress and we joined immediately. Luckily, we hadn't missed that year's convention yet. We registered and went to it a month later. That day we met so many other parents of children with Down syndrome and realized we weren't alone. Right after I had Joey, a couple of other moms from the T-21 message board found my blog and that leads me to now. I've made so many online friends through this blog that I can relate with. Thank you ladies for finding me!!!!! I look back on how silly I acted, almost thinking that it was the end of the world and almost laugh at myself. God chose us to have Joey and I wouldn't have in any other way. I have started to dedicate my life in becoming an advocate on Down syndrome and to being the best mom I can be for Joey and future children we will have. I love Joey with all my heart, extra chromosomes and all!

Written by Joey's mom~ Jessica

Big Brother's 21 things he wants you to know about ME

The month of October is Down syndrome Awareness month. Last October, ME's big brother , decided to write 21 things about her, to join the fun of raising awareness about Trisomy 21. ME was two when he wrote this. It is quite sweet. Here is his list...Enjoy!

Big brother's 21 things about ME..

I had to join my mom in this. I thought it might be cool to have a brother's view on this.

1. ME is the only person I know who can terrrorize my room and look cute while doing it.

2. ME genuflects when she enters the pew at church.

3. ME is the first person to dance when music is on.

4. ME is a pro at trick-or-treating.

5. ME loves to pray the rosary with us.

6. ME can make friends with anyone even when they are not being nice to her.

7. ME had open heart at six months and was released after three days.

8. ME likes to crawl on the floor and make cat noises. She is very good at pretending.

9. ME can get up onto any chair in our house no matter what the height.

10. ME can make babble sound like an official language.

11. ME loves to have books read to her.

12. ME has over four nicknames including Emmy, ME, squeakers, and Babe Sis.

13. ME knows how and when to say "Shhhh."

14. ME isn't afraid of much but when she is, she runs to me, her big brother!

15. ME has met Chris Burke.

17. ME loves baby dolls and strollers.

18. ME won't go anywhere without her purse.

19. ME is very photogenic.

20. ME gives out awesome hugs.

21. ME shows us everyday that she is special (but that has nothing to do with Down Syndrome).