A Fathers perspective (Faith)
I’m convinced that things happen in life for a reason. I still remember those words that your daughter shows some characteristics and that additional tests needs to be completed. In the beginning I was reserved because I did not understand what Trisomy 21 was.

It is now four years later and I’m happy to report that Faith is the light of my life. As she grows I grow. The little things make the difference with my little girl. We started Faith in school when she was three and it has done wonders for her. She likes to assist her teacher everyday in class and is always the little helper.

She was behind in her walking but now she walks around the house and school with a purpose. Once we started Gymnastics, Faith has made some major strides. She seems to enjoy tumbling, somersaults and bouncing up and down. We are now working toward helping her with her talking and reading.
Faith has a two year old sister and a newborn brother. Faith and her sister learn a lot from each other. I will do everything in my power to help her. I’m looking forward to witnessing the major accomplishments she has ahead of her.

Cristian
I will never forget the day that I found out that my oldest sister was pregnant. When she was having complications and they had to induce her 2 months early I really wasn’t worried, but I made sure that I went to the hospital to see my new nephew. My first image of him was with these tubes and monitors hooked up to him while he was in an incubator which was right before he was rushed off to Children’s’ Memorial Hospital. The nurse came in later after he left and said that they thought he had Down Syndrome. My heart sank and I immediately went into questioning how could this happen? Why would this happen to two of the most genuine, kind, and giving people that I have ever known? I left the hospital that night and I went home balling like a baby and still questioning why? I prayed that night for them to be wrong and for him to be “normal”.

Cristian came home on Valentines Day and I finally got to hold my nephew for the first time. And yes he had Downs but he was truly beautiful. He has faced many obstacles and has endured each one and came out of each experience with the same loving spirit. Our family mantra was not to treat him or have others treat him differently because he is still a child and needs to be nurtured and guided just like any other child. I have 2 kids now and I would make sure they were around which I thought would help with his development but honestly being around Cristian has taught US a lot and I wouldn’t have him any other way. For Cristian, there is no such thing as no or quit he tries his best at everything that he does. He may not get the first time but there is always an effort to try and honestly that is all that anyone can ask for and of course he loves the praise and attention when he completes his task, even his cousins get in to the encouraging him and it is so heartwarming. Cristian has a smile that is contagious and personality that leaves a lasting impression. On one particular day I was at the grocery store with my sister and Cristian said a big hello and smiled to this elderly man who was doing his shopping. This man stopped us and said that he was having a pretty bad day and Crisitan speaking to him was the best thing that happened to him on this particular day he made him smile. Cristian has been such a blessing to our lives and I can honestly say I now know the answer to my questions of why…Because GOD doesn’t make mistakes and he is as “normal” as you or I. On January 18th, 2003 a truly genuine star was born and his name is Darnell Cristian.

Samantha

Cristians’ Te-Te
C- Charismatic
R- Resilient
I- Inspirational
S- Sociable
T- Talented
I- Individuality
A- Active
N-Never gives up

Grace
Story on how Grace has impacted our lives………
Grace is truly the light in our lives. She is such a happy little girl and I could not imagine her being any other way. We call her “Little Honey” because she is sooooo sweet.

Her presence has influenced our outlook on life and has helped us keep life’s events in the proper perspective…….which has strengthened our family’s bond. But I am not just talking about the immediate family of Dad, Mom, and brother. Grace’s birth has brought the entire extended family closer….both emotionally and geographically. In fact, Aunt Anne + fiancé Jason David, and Aunt Whitney + Uncle Brian + Cousin Beckham all moved to Chicago (from San Francisco and Atlanta) before Grace turned 2. When she was born, those folks all realized what was most important in life……family. So they left their jobs, friends, and warm weather to re-establish their ties with their Chicagoland families. I am convinced that if Grace was born without Down Syndrome, the family would still be spread all over the country.
As Grace’s father, I feel that this little angel named Grace was truly sent from heaven.

Brett
Hi Everyone,

My name is Brett Howard. I wanted to tell you all about myself.
I was born on May 4, 2006. I couldn't understand on that day why all these people were looking at me with such sad eyes. Hey, it is just me, Brett. What do you mean I have Down Syndrome? Does that make a difference? I don't think so. I am a baby and I can show you a lot about living. Mama and Daddy sure were scared at first but I am showing them that Down Syndrome isn't as scary as it sounds. My sister and brother love me because I'm Brett. Down Syndrome doesn't make a difference to them. I hope some day everyone could feel that way! It's taking me longer to learn to walk and talk, but I will learn with the help of my therapists and Mama and Daddy. I'll go to the same school Leah does. Maybe Daddy wi ll even ;coach my football team like he did for Nathan. I smile at people everywhere I go. Surely they get the idea that if I am happy to be alive they should be too. I want the world to know that even though I have this thing called Down Syndrome I love, sleep, play, eat, laugh, cry just like everyone else. I'm really not that different.

Lily
Before I became pregnant with Lily, my husband and I felt like we had already lived a lifetime. Our first daughter Penny, had passed away suddenly when she was only 9 months old. She had a malignant brain tumor and died during the operation. Steve and I were devastated. We knew we wanted to have another baby, and only 1 month later I was pregant with Lily. We were so excited to know that we were going to be parents again.

The pregancy was a roller coaster. I was still grieving the loss of my daughter and wasn't really able to enjoy being pregnant. Then I started having contractions at 32 weeks and had to be on bed rest for the remainder of the pregnancy. My mom was able to care for me at home. She took me in for a level 3 ultrasound, but Steve wasn't able to be there. I went in and my mom waited outside. After the examination the doctor was going to let her in to see the baby's face. As the doctor was checking me, I noticed he started concentrating on one particular area. He seemed concerned and wouldn't say anything to me. Finally I asked what was wrong. He said that the baby had a heart defect and that there was a 60% chance that she had Down syndrome. The only word that came out of my mouth was "No!" I slowly started to cry and couldn't understand why this was happening to me. Before my mom came in the room the doctor asked if I wanted him to say anything to her, but I said no.

After the visit Steve was there to pick me up. He asked how it went and I said everything was fine. I didn't want to tell him in front of my mom. After we got in the car, I started crying and said, " there's a 60% chance Lily has Down Sydrome and she needs to have surgery to repair a heart defect." Steve began to comfort me and said "We are going to love her no matter what. Everythings going to be ok." A couple weeks later we decided to have a "family meeting" to let everyone know what was going on. We figured this would be easier on us so that we wouldn't have to say the same story 10 different times. Everyone seemed a little worried but they took the news pretty well.

On May 27, 2005 we finally got the joy back into our lives. At 36 weeks I gave birth to Lily. I wasn't given the chance to hold her because she had to be on monitors. It was only then that the doctors confirmed that Lily had Down syndrome. I looked and them and, "Okay." And everything did end up being okay. She stayed in the hospital for a little over 2 weeks and then came home. I knew that the worse part wasn't over yet. Doctor's wanted her to be at least 10 pounds before her heart surgery and she wasn't gaining weight fast enough. At 6 months old she was only 6 pounds 5 ounces. Doctors couldn't wait any longer and had to do the surgery. Nov 15, 2005 was the most nerve wracking day of my life. I hadn't been in a hospital waiting room since my first daughter's surgery. All of our family showed up to support us. After about 4 or 5 hours the nurse came in and told us the surg ery was over. We were all relieved. She was out of the hospital in 5 days. She was such a fighter. I couldn't imagine what it was like going through something like that.

Everyday she continues to amaze us. She has done things that people have said she'd never do until at a later age. She started walking at 18 months and at 2 1/2 yrs old she's already using the potty. She loves to have books read to her and colors on things that aren't only on paper. And when she doesn't what she wants, her little diva attitude pops up. She is exactly what our family was missing . Lily has made our days brighter with her beautiful smile. We may have been through alot, but we know her guardian angel is watching over her.

Katie
A Mother’s Story
Dave and I were married in Maryland the summer of 2001; our son Jack came along right away. When I was a couple of months pregnant, I received a phone call at work from the administrative staff of my ob that my triple screen test had come back positive for DS. The woman on the phone said that she had scheduled an emergency amniocentesis so that I would “know my options”. After actually talking to the doctor, I found out that anyone my age (37) would test positive and that my number wasn’t off that much given my age. I declined the amnio but I couldn’t un-ring the bell and I worried the entire pregnancy that Jack would have Downs. It turned out to be a false alarm.

In February of 2003, I realized I was pregnant again. We had just been transferred for the second time, this time to Kansas. Jack had just learned to walk, there were still boxes all over the place and Dave was traveling Monday through Friday every week. As glad as I was to be pregnant, I was having a hard time figuring out how it had happened. I was sure this was going to be my little girl and that she would complete our family. I was so sure that when I sent my parents flowers for a special occasion, I signed the card, Dave, Holly, Jack and Katie. Dad figured out that was my way of telling them I was pregnant; Mom wasn’t sure the florist hadn’t goofed!

I found a new ob in Kansas, because of my experience with Jack, on my first visit I told him to forget the triple screen; I wasn’t going to do it or an amnio. I did agree to the level 2 sonograms. I had a nice easy and normal pregnancy. Right from the start, Katie was easy and fit right in with the family. My third sonogram showed that Katie had arms on the very short side of normal, but that didn’t upset me at all. Dave has shorter arms and legs. I was scheduled for another sonogram but I never made it that far. At 34 weeks my pregnancy all of a sudden turned toxic and the doctors determined Katie and I would both be better off if she was born early.

True to form, Katie was an easy birth. Though it was an induction, she came faster than expected and she had all the staff scrambling at the last minute, poor Daddy got up to wash his hands and missed it. She was small for her age, only 3lbs 11oz but that was expected because of my toxemia. She got 9s on her APGARS and I was able to hold her briefly before they whisked her off to the NICU.

I ended up having emergency surgery after the birth so I didn’t see Katie again until she was about 10 hours old. Dave and a nurse put me in a wheelchair and took me to the NICU. Another nurse explained what all the equipment was for and how Katie was doing and then she said, “Also, we’ve ordered an additional test because we’re seeing some of the softer signs of Down syndrome.” She then proceeded to enumerate what signs Katie did and didn’t have and asked me if I knew of the risk at my age. She even showed me a graph. It made me feel like I had been irresponsible in getting pregnant. After hearing everything, Dave was sure the test would come back positive; I was sure they were just doctors running every test possible. The little things the nurse was talking about could be found in other family members and how could they tell anyway, she was such a little preemie?

Twenty-four hours later, the test did come back positive and we cried all day. How could God take our beautiful, perfect little girl and not make her smart too? Then we started to hear about all the potential medical problems and we realized we had even more to worry about. Katie’s heart appeared OK, but her platelets kept dropping and she had to have several transfusions. Of course the hospital sent all kinds of people in to talk to us. We were told that a year from now, we would look back and wonder what we were so upset about. We heard that though there was always “some retardation” there were all kinds of programs available to help Katie, and how she had the “Cadillac of disabilities” because it was a definitive diagnosis, so much was known about it and the insurance companies would pay for it. Everyone told us how happy she would be and what a great disposition she would have. I remember at one point, Dave said if another person told us how pleasant she would be he would shoot them, we weren’t choosing a puppy!

Well, all those people were right; it just took us a while to be able to hear it. We did realize early on that we had to learn to take one day at a time. Most of the medical concerns turned out to be non-issues. If you look at the picture of Katie when she was a few hours old, you realize what a long way she has come. She is now 4 1⁄2 and she is happy. She goes to pre-school five days a week. She loves to color and read books. She is very social and a little instigator; she knows just how to get her big brother’s goat. She is a tomboy and she stands up for herself. There is no way Jack is going to get a treat to eat or do something fun and she isn’t going to get to eat it or do it too. If somehow she is displeased, she can give you the same evil eye that her great grandmother was known for. Since her brother is often too obtuse to read her moods and she realizes she can’t beat him up physically she has begun taking his possessions and throwing them somewhere out of his reach, like into the sump pump or behind the king size bed. Katie completes our family. We all love her so much and we are so proud of her. We can’t imagine, nor would we ever want life without her just as she is. It does take Katie a little longer to learn things than it took Jack but she is our last child and that just means we’re getting to enjoy each of those fun baby stages a little longer.

Right now, life is as close to perfect as it can be, but I still have long term worries for Katie. Will she have friends, will she fit in, will she be happy, will she be able to live on her own and support herself, what will happen when we’re gone? But I’ve come to realize they are the same worries all mothers have for all of their children, I just have them a little more. As her Daddy says, “No one has proved to me that Katie can’t do anything she wants, I have every confidence that she will drive, go to college and that someday, I will walk her down the aisle”.

Katie’s Mom
Holly

Kelvin
How my son with Down syndrome has impacted our life:
Three years ago the world changed for me and my family when Kelvin Christopher Mclaurin was born. Kelvin was diagnosed with Down syndrome two weeks after he was born after experiencing full repertory failure and spending four weeks in extensive care at Loyola Medical Center. This diagnosis was a shock for our family as we did not know anyone with Down syndrome and had no knowledge of the condition.
Our Christian faith and my education background has been the two assets which have helped us cope with Kelvin’s condition. When most people asked the question why is this happening to us, our family’s attitude has been from the beginning, we are the best family for Kelvin’s because of our Christian faith, my education background, our love for children and our financial status. These factors allow us to give Kelvin every opportunity for a loving, healthy and productive life.
Kelvin has truly been a gift from God for our family. We have taken the time to understand Down syndrome and the impact it has on Kelvin’s life. We installed a treadmill in our house to work on Kelvin’s low muscle tone by having him exercise for 20 minutes a day to his favorite music. We also purchased a wonderful program called Signing Time which taught Kelvin sign language in a fun and entertaining way. Both of these examples have impacted Kelvin growth and influenced our family’s development by increasing our level of exercise and improving our communication through learning sign language. We have also been enriched by meeting other parents with Down syndrome children through GIGI’s Playhouse and Independence School.
Kelvin has grown to be a feisty and independent three year old boy who loves learning, playing and spending time with his sisters Gabrielle (12) and Kelsey (9). Kelvin’s greatest gift to our family is teaching us that all God’s children are beautiful and that God loves us in spite of our flaws and imperfections. Kelvin instills a passion in all us to eliminate the terrible injustice in our culture that somehow people with Down syndrome are regarded as “less than”.
My husband and I have lived most of our lives believing that intellectual capacity and physical appearance are the most important factor to a healthy and productive life. Kelvin has broadened our perspective and enlarged our hearts. He shows us how little he cares about our intelligence and our physical appearance, how much he cares about the time we spend with him and the love we share as a family.
Robbie

Emilee
Although Emilee is only 6 months old, she has changed our lives just like any new baby would. To explain the change in our lives we would have to go back before she was born and the way we lived. We were a family of three, my wife worked part time so that she could spend more time with our son Andrew. My role was to take care of the family, so I worked many hours usually leaving the house at 4:00am and sometimes not returning until 7:00pm six days a week. You could say that I missed out on a lot of family time, but I thought this was okay as long as my wife could be home -- it was a trade off.
Then Emilee was born and she was instantly daddy’s little girl, I was so excited. We were told shortly thereafter that they suspected she might have Down Syndrome. We were devastated at the time. We didn’t know much about Down Syndrome and that’s were the journey began. After weeks of denial, confusion and worry, my wife and I put a plan into play which meant she would stay home so that we could give Emilee the best care possible. I cut my hours at work so I would be home by early afternoon to help out. I didn’t know if it was financially possible, but it had to be. On our search to find help and guidance we met so many people whose lives have been touched by Down Syndrome and how it changed many things for the better.
Then we started looking for support groups which is very limited in southeastern Wisconsin. We were somewhat discouraged until our Birth to Three Coordinator told us that GiGi’s Playhouse was thinking of opening a facility to serve Northern Illinois and Southeastern Wisconsin. We were so excited! My wife and I went to the first meeting regarding this and felt it was exactly what we needed for our family. We went home and looked at your website, did some research and decided to visit the Hoffman Estates location. When we walked in we were instantly welcomed and I felt a bond with people I just met. My wife has know become an advisory board member for the McHenry location and I am very proud of her.
My daughter has changed my life in so many ways. She has taught me to be more compassionate, loving, understanding, patient and to share quality time with my family. Keeping in mind she is only six months old I can only imagine what this adorable little girl, who has a smile and laugh that melts my heart, will teach me in her lifetime. Everyday I give thanks that god has blessed me with such a great family and for everyone who has been brought into our lives.Robert Sachs – Father of Emilee, 6 months old

Christina
For the past seven years we have been very blessed with our daughter Christina who has down syndrome.
This past birthday, we had a bowling party for Christina and her friends. It was Christina’s golden birthday. Her birthday is December 7, 2000. Christina and her friends had a good time. She’s a pretty good bowler.
Christina has made great strides this past year at school. She has been more talkative. I remember I could not wait for her to start talking more. And, here it is she is
doing it. She also has been reading a little bit more. We are so proud and happy that she is beginning to come this far.
She is one of the most sweetest and friendly little girl. She is a pom-pom girl for her schools’ basketball team. And she just loves it. The pom-pom squad does their dance routine to “You’re so fine Mickey.”When they do the routine Christina and the girls do a great job.
Christina also does hip-hop dance after school. And it is so cute to see Christina dance with her friends.
Her two little best friends are her brothers. They look out for her everyday and love to see her off in the morning when she is getting on the school bus. And before she gets on that bus, they make sure they give her a hug and kiss. And, they tell Christina have a good day. We love you.
They boys enjoy going to see Christina, when she does her pom-pom dance. Her brothers love her very much. After all she is the greatest big sister to twin brothers. They really have a good time together.
We are so proud of Christina. We are very blessed and very lucky to have a very beautiful girl with Down syndrome.
Nothing can and will stop her and other children with Down syndrome. They do and will success in life.
We thank God everyday for Christina for making her healthy and happy.
God Bless Christina and all other children and people with Down syndrome.

Teagan
The day my niece Teagan was born, our entire family changed. We didn’t know what to expect and our initial reaction was fear. I remember being afraid to leave the hospital that day in case she wasn’t a strong baby. Now when I look back, I realize how wrong I was. The only thing I knew for sure from the moment that I saw her was that she was going to have my heart forever. As the days turned into months, we marveled at what Teagan was accomplishing. She was inquisitive, strong and beautiful. I was looking forward to her first birthday to mark an incredible year for Teagan.
As she gets older, her personality is shining through. She is funny, SMART, a little stinker, mischievous, but it is much more than that. I know that I am not alone in when I say that I love spending time with her reading books, playing, looking at the way she marvels at things, cuddling, and basically watching her grow into an incredible person. She is a very bright light in our lives and it is a privilege for me to be her aunt and godmother.
Teagan, although she is only 2 1⁄2, makes me want to be a better person, and I see great things to come for her. She has made us realize that change is not only good, it is unbelievable!

Daniella
From the teacher:
When Daniella and I met last year at our preschool open house, she was very shy. She would not even look at me! As the year progressed, so did our relationship. Now I am greeted everyday with a “Hi Miss Maggio!” and a big hug. Her favorite places to play are the pretend center and the book corner. I cannot even count the number of times she has made me spaghetti and meatballs and later read Chicka Chicka Boom Boom aloud to me! Her love of music is infectious to everyone around her. Our favorite songs are Hot Po tato (Wiggles), Alphardy (Dr. Jean) and Wiggle Your Hips (Tots Rock). Daniella is such a loving, caring, and energetic child! As her teacher, it has been very rewarding watching Daniella grow over the past year. She is an amazing young girl that has a special place in my heart forever.
Miss Maggio

Jacob
It's hard to fathom how much Jacob has enriched my life since he was born almost a decade ago. "My bud" has an irrepressible spirit that serves as a constant reminder to enjoy life. "My tiger" demonstrates a determination (some might say stubbornness!) that reminds me that my obstacles in life are almost trivial by comparison. I never imagined that anyone could look up to me and feel as attached to me as the little guy I often call "Sir" or "Mister" clearly does (no slight intended to the two females in my immediate family). When he hugs me it's probably the best feeling in the whole world. His giggles when we have "Yo-Yo" time are just fantastic. We are truly, to use Jacob's own words, "Best Pals"!
It warms my heart to watch Jacob interact with others and see how he so easily makes them smile and laugh. I'm sad when he can't go grocery shopping with me, as I miss the many greetings he gets from the employees who know him by name (and love to slip him a couple slices of salami or let him run some groceries through the scanner). I can see it in the faces of his teachers (including his mom and sister) how proud they are of him and how rewarding it is for them to facilitate and witness his many accomplishments. I'm not sure which of the two of us gets more excited when he is able to read a book or shoot a basket or play a piano piece successfully! I'm sure Jacob has taught me to be a more patient and caring person than I ever would have been without him.
Jacob's presence serves as a constant reminder that "It's a Wonderful Life"! I very much look forward to spending our next decade together.
Joel

Michael
You can teach an old dog new tricks!
Or… you can teach your 90 year old Grandmas that children with Down Syndrome are just children too. M.J.’s Great Grandmas are both the sweetest old large hearted Christian ladies you would ever meet. However, when it comes to their experience with Down Syndrome they have limited knowledge and a scared kind of love.
Grandma Mor Mor and Grandma Jet, both love to tell stories, often the same story over and over. And they like to tell us just how it is with people with Down Syndrome. In their world, they knew of a lady who had a daughter with Down Syndrome and she had all she could handle to get the girl out of the ‘home’ and bring her to church on Sunday. She didn’t really do much or say much or have a personality for that matter, she just was. This was a long time ago… nearly 60 years since they have had experience with a person with Down Syndrome. So it was understandable to us their reaction as we explained about our baby, M.J., and his diagnosis of Down Syndrome.
FAST FORWARD…
As M.J. grew from a tiny infant surviving heart surgery to the big strong toddler he is now, the Grandma’s have joined the entire family celebrating his many milestones. Monthly family gatherings have gone from stories of fret to smiles of inspiration. M.J. is all that they thought he wouldn’t be and much more. The stories surrounding the term Down Syndrome have shifted from, “oh this one girl at church who we don’t think lived very long” to, “what wonderful thing is M.J. doing now?” This is amazing!
With every hug and every prayer the now 92 year old Great Grandma’s have learned that nothing is more special than our little boy with Down Syndrome, or really that he is just that; our little boy.
By Mom, Jackie

Heather
Heather’s Story
The Birth of an Angel
The phone rings; it is Sunday morning. I stare at the number on the caller ID, barely able to breathe. I use all of my strength to keep my voice steady as I say, “Hello.” I begin to hear bits and pieces of a conversation I never imagined I would have. “Your daughter…Down syndrome…chromosomes…two kinds…I’m sorry…if there is anything I can do.” My doctor did the best he could to explain. I did the best I could to listen.
My entire body is numb, melting away like the snowman on a sunny day. I can’t feel it and yet a voice inside my head is screaming to be let out. This can’t possibly be happening. Maybe if I sit by myself for a while, I will be able to feel my body again. Maybe I will be able to think clearly. I am waiting, nothing is happening. Oh, no! Here comes my husband; he will want to know what happened. I can’t possibly repeat that conversation; I can’t possibly say those words out loud.
My mouth is moving, but my voice is silent. It has gone away and has been replaced by a struggle to breathe. Will it ever come back? I can’t help but wonder if I will ever be able to speak again. Slowly, ever so slowly, I start to breathe. My body has feeling and I can try to speak. My voice is quivering and I am gasping for air as I repeat that conversation to my husband. I stop several times; it seems like an eternity has passed since I began speaking.
“Well, now we have our girl,” I hear my husband say. These words seem so normal, so ordinary and yet they move me as if I am hearing an inspirational speaker. A girl. What does that mean? A girl with Down syndrome?
I am now obsessed. I must find out everything there is to know about Down syndrome. I start looking through websites. There are so many…which ones tell the truth? My mind is a storm drain after the most violent storm. The information comes pouring in faster that it can be absorbed. There are so many words and phrases out there I do not want to see: mental retardation, heart surgery, hearing loss, vision loss, low tone, unintelligible speech, digestion problems. How on earth will we be able to cope with this? This is Sunday; hopefully Monday will be better.
Time goes on, and I still wonder what is in store for this child. How will she look? I have a vivid memory of a picture of a boy with Down syndrome in one of my college textbooks. He was standing next to a wall looking so lost and lonely. It reminded me of a mug shot, yet I knew he had committed no crime other than being an outcast of society. This picture stuck with me over the years; I could never figure out how I felt about it. Did I feel sorry for him? Did I want to save him? Why had they put him in an institution? These questions haunted me for a long time, even before that Sunday.
Will she have health problems? It is so hard to care for a child without health problems. Will I be able to take care of her the way that she needs? I think about the day my husband and I decided that two boys were enough and we were not going to have any more children. I had the strangest feeling of relief. It was a surprisingly physical sensation, starting in my head and stopping in my heart. I had a nagging feeling that I would be missing something important with this decision. Then I forgot all about it, until that Sunday.
As I explain to my seven-year-old that his sister will have Down syndrome and she will need extra help learning he looks at me with the face of an elder. “Isn’t that the way all babies are mom? Don’t we have to help all of them learn?” Wise beyond his years and dispensing better advice than any expert. The fear that is paralyzing my heart is beginning to lose its grip, at least for the moment.

Jimmy
If there was one thing I could say to an expectant mother about their child having Down Syndrome I would say, “Wow! You must have done something right in your life for god to have blessed you with such a gift!” I am the PROUD mother of Jimmy Raff. I am not the typical stereotypical age of a mother who has a child with DS. I got pregnant with Jimmy when I was 27, gave birth at 28. My doctor was very old school, and every time he would give me news regarding the standard tests, and statistics it always seemed to reek of negativity. Instead of educating me on the amazing possibilities, and goals my child could achieve he opted to take the grim medical delivery. For my age statistics always were the exact opposite of what they should have been…should have been? That is the exact thinking I am perturbed by! He made me feel like there was something wrong with me and my unborn child, all because of test results. Well I am here to tell you I am not the typical stereotype, children and individuals with DS aren’t the typical stereotypes…society is the typical. Our world needs to change, mothers out there need to know that a child with DS, is a life of happiness and lessons, not a flaw, not a downfall, not a burden to their life, but just the exact opposite. It is because of my son I know strength! He overcame heart surgery, and every week of his young life thus far attends therapies, in which he always inputs 150% no matter his mood. It is because of my son I know patience. Everyday of his life I will let him know how grateful I am to be his mother. Every day I will let him know that I look up to him, and that he is my HERO!
-Erica-

Grace
Written by Rick, Grace’s Dad:
For the first time parent, having a child can change your life and your perspective on life. Having a child with a different-ability can profoundly your change life and viewpoint. Every aspect of the health and development of our daughter has taken on a heightened importance from echocardiograms to rosy cheeks and first words to identifying body parts. You devour information and spend nights worrying if you are doing enough for her. This stress is added to everyday stress and can become daunting.
Then I come home from work or a business trip and walk through the door and this two and a half foot high beam of light comes hurtling towards me from across the room, face scrunched in a broad grin, eyes tightly closed with arms wide open. I bend down like a catcher waiting for the next pitch and she slams into me, giggling. I pick her up and everything else in the world melts away. She hugs me closely and I’m in heaven. There is no better feeling in the world.
Over time you come to deal with the health and development issues. Progress is made. Old worries and fears dissipate, replaced by new ones. You find solutions and compromises to problems and obstacles. But my perspective has changed. We take joy in the victories and little things and have patience for slower progress and set backs. We have also discovered this great community of same-situation people from all walks of life. We have moved beyond coping to thriving.
As life changes and moves forward, the one thing that I hope never changes is that ‘feeling’, that ‘magic’ that happens when I’m touched by my daughter’s pure, unconditional love.
Written by Mika Schindewolf, Grace’s Mom:
So much has changed in me in the last two years. I never felt that Down syndrome was something to mourn. I never felt Down syndrome was something to hide, be ashamed of or define myself or my daughter by – but in the last year my perspective has changed a bit. Although I still don’t feel DS defines my daughter, I embrace it more fully as something to celebrate. Grace is an amazing spokesperson for Down syndrome, just like many of the children we’ve met at GiGi’s Playhouse are. She proves every day that she is just like any other child – full of love, excitement, frustration, joy, intelligence and she takes this into the world and shows other people that she’s no different than any other child. With every person that comments to me about how amazing Grace is, with every day that passes and Grace challenges and amazes me with what she can do – I realize that our additional chromosome is something to be thankful for as it has given me a purpose in my life that I never expected.
Our family will be relocating this year to Boise, Idaho. I’ve been very sad about leaving the GiGi’s community and the work that’s being done by my friend, Sue DuBois, to open the McHenry location. However, I’ve come to realize that I’m not leaving our GiGi’s Playhouse family behind. Perhaps it’s meant to happen this way so Grace and I can take the GiGi’s mission and message, OUR message now, to Boise and spread the love in Idaho. I now look forward to the opportunity to open another location on my own (with the help of others, I hope) and keep the positive message alive in our family and in another community. I’ve been mourning what I’m losing but now believe that more will be gained if we can help take this message to other places – and this is the purpose GiGi’s Playhouse and my daughter have given me. I’m not leaving anything behind, I’m taking it all with me and someday, Idahoans will know, like so many here in Illinois know – that our kids are not less, in fact they are more – and there are no limits to their lives.

Hannah
I have a wonderful little 2 1/2 year old girl named Hannah. She has taught me many things in her young life. She has taught me to try to see everything with renewed awe. Every time a bird flies by it is not just another bird but a wonderful event. Every new person that comes down the lane in the grocery store is not just another shopper but someone you should greet with a warm smile. When your favorite song comes on the radio it really is ok to sing and dance. Some how we are all taught as we grow up not to feel these things. We are taught to live inside the lines. Hannah has taught me it really is ok to feel these feelings all the time.
She has also taught me that by being persistent you can over come your fears. Hannah had to go through hours upon hours of physical therapy to learn to crawl. It was something that was not happening. Little by little she began to get comfortable and on her second birthday she crawled across the floor. She is now just as persistent with walking. You can see the fear in eyes but it does not stop her from trying to walk. Now as she has begun to take steps on her own she has taught me the true meaning of excitement.
Having Hannah has also taught me the true feeling of fear. The fear of how others will treat her because she is different. The fear of her being excluded for being different. Working with Gigi's I hope this is one feeling that I will be able to forget as we help educate those around our children….

Nicholas
By Maria (mom to Nicholas)
It began in November of 2000. I checked my phone messages to only hear the concern in my doctor's voice over the results of my AFP test. The flow of uncertainty began to take over any means of rational thinking. I was close to 20 weeks into my pregnancy. I realized I must take the next step and acquire more information. So I opted for a level 2 ultra sound as opposed to an amnio. My chances for having a child with Down Syndrome (DS) was approximately 1 in 235 for my age, to 1 in 41 after the test. The ultrasound decreased those chances to 1 in 82. As we exited the hospital my husband looks at me and says, "That is almost a 1% chance." "If someone told you you had a 1% chance of winning the lottery, what would you think?" "Not a good chance", I said. After all, I'd had two other healthy children.
We waited with anticipation for the next 5 months. April 14, 2001 had arrived. The day our lives would foreve r change. The nurse set him in my arms and I looked directly into his eyes. My heart began to race and the tears began to flow. I asked myself, "Is this what it feels like to have your heart broken?" I looked at my husband and said the baby has DS. My husband could not understand how I knew just by that brief moment. A mother knows. The tests concluded that fact. He was given the name Nicholas, after my father. There was a hesitation to name him that, because I felt how could I honor my father with this child? That quickly changed when his grandfather loved him for who he was. There was great pride.
For the next 4 days, we cried and held each other. The range of emotions were running rampant. Deep sadness, fear of the unknown, and a feeling of letting down our other children, just to name a few. Nicholas was born the weekend of Orthodox Easter. The most celebrated, joyous expression of love in our faith. I took this as a sign. God was telling me to celebrate this child, for he is pure love in every sense of the word. We realize now that he completes our family. He has opened the hearts of our family, church family and friends. Through Nicholas, we have met the most extraordinary people who continue to inspire us. We have also made many lasting friendships. Nicholas continues to make great strides. He is a happy, healthy, independent seven year old who is full of life and high energy. He loves animals, music, squeezy hugs and playing with his older brother and sister. I'd like to close with a poem that I received at his birth. I still read it from time to time to remind myself that life with Nicholas will always be beautiful.
'Welcome to Holland'
I am often asked to describe the experience of raising a child with a disability-to try to help people whom have not shared that unique experience to understand it, imagine how it would feel. It's like this: When you're going to have a baby-it's like planning a fabulous vacation trip- to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum, The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. " What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy" But there's been a change in the flight plan. They've landed in Holland and there you musy stay. The important thing is that they haven't taken you to a horrible, disgusting filthy place, full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And the rest of your life, you say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Khali
MY INSPIRATION
Khali came into my life 3 1⁄2 years ago. She is the most precious gift I have ever received. She is everything I always dreamed my little girl would be, and much, much, more. She brightens every day. I have learned so much through Khali, as a mother and as a Pediatric Nurse. As I look back at all of Khali’s accomplishments these past few years, “she is amazing”. Despite her busy schedule with therapy, pre-school, play dates, and doctor appointments, Khali is always happy and full of life. If something new is introduced, she strives to do her best, to be successful.
She is an inspiration to me just knowing all she has been through in her life; she is still a very happy and loving child. Each day she tries to please and love everyone unconditionally. I believe if Khali can do everything that she has done in her life, then I can overcome whatever obstacles are placed in front of me.
My increased knowledge of Down syndrome has opened my eyes as a Pediatric Nurse. Every child brings something special to the world and you can see it with their different personalities. I enjoy each day whatever it may bring and appreciate what each child brings to the world, be it a “smile” or “just being”. Because of Khali, I have become a resource for other parents and co-workers I encounter through my career.
I can’t imagine my life any different or without her in it. “Her abundant love for life and those around her is apparent in all she does everyday”. I only hope her love for life and others will continue to inspire me and others to do the same.
Julie

Samantha
Debra
Mom to Samantha
Our 2nd daughter entered the world on Dec 30, 2005 and would forever change the way we see the world before us. Samantha was diagnosed with Down syndrome at birth and so many thoughts ran through our minds. Would she be like the other kids? Would she learn to do things the same as the other kids? Will she walk? Will she talk? Will she feed herself? She was only 5 lbs 7 oz and seemed so small. With her low muscle tone she looked even smaller to us. We brought her home determined to do whatever it took to give her everything she needed to make it in this world.
Fast forward to 2008 and we now have a healthy 27 lb 2 year old who has already far surpassed all of our hopes and dreams. Have all of our questions been answered yet? Has she reached all of the goals we have set for her? She has reached goals we didn’t even know were set and then some. And she has so many more to go. Has she done them in the same ways as our other 2 children? Maybe not. But she certainly has done them! She is our walking, talking, busy little girl we had wished for when we found out we were having another daughter. She brightens a room with her smile, she charms the socks off of strangers, and she gives hugs that we swear come from her toenails. She has an unconditional love for everyone that we find so sweet and so pure. It’s the kind of love that we wish more people possessed. And it’s probably one of her greatest gifts each and every day.
Before Samantha, my husband and I saw joys and sorrows every day, just as everyone else does. But now, we see them through her eyes and they don’t seem to look the same. Seeing her joy over every detail of the day has helped us to slow down and enjoy the small things in our world. Who would know that there would be so much to see in her little world? We would never know how much joy can be found in the simplest of toys and how much happiness can come from the smile of a loved one. We wouldn’t know that having a brother and sister roll on the floor would bring such a shriek of happiness or that a small tickle would produce such a genuine laughter. We wouldn’t know that a first step or a first word would be such a triumph. These things have now become a part of our daily life and something we truly look forward to each and every day.
Down syndrome sounded so frightening only 2 years ago. It was an unknown “something” that our daughter had. It was something we knew so little about. In the 2 years since, we have found it a gift. Through support groups, play groups and get- togethers we have made new friends and found new joy. We have found ways to give back to something that has given so much. Through the fundraisers, gatherings, and celebrations we have come to see that the world is so much better with our three children. They all have added to our happiness in their own way and they all will continue to grow and become the kind of people that will make us proud. Having a diagnosis has changed nothing in how we feel about Samantha. Nor has it changed the dreams we hold for her.
Will Samantha drive? Will she live on her own? Will she go to college? These were the unknowns that scared me so badly 2 years ago. Now? Now they are just “unknowns” that I have for all three of my children. And they are the “unknowns” that I look forward to watching unfold as the days, months and years pass by. They will be the triumphs and sorrows that ALL parents face as they watch their children grow. And they’re something I find exciting. We now know that we take it one day at a time and enjoy each and every one of them.

Michaela
My Awakening
My pregnancy was anything but easy. I think I was about 22 weeks along when our midwife, Pam discovered on the ultrasound that we were having a girl (yeah!), however, I also had a bit too much amniotic fluid (polyhydramnios is the technical term). She recommended that we get another ultrasound in about a month or so and figured that it would go away on its own. Well, she figured wrong. In fact, my belly continued to measure out larger than it should have, and on the next ultrasound my fluid level went up even higher.
After this ultrasound, the midwife referred me to a local hospital to get a level two ultrasound, which from what I understand is a more high tech ultrasound that can detect things that a typical ultrasound cannot. After the ultrasound, I also met with a prenatal specialist who had reviewed the ultrasound. He indicated that he could rule out certain disorders that would cause the baby to have swallowing difficulties, although he could not rule out Down Syndrome. From what I recall, he stated that there was a slight chance that our baby had Down Syndrome as some babies with this disorder do not swallow properly in the womb, although he did not recommend getting an amniocentesis that late in my pregnancy due to the risk and the length of time it would take to get the results. The doctor recommended twice a week non-stress tests (those were quite fun) to make sure the baby was doing well despite the excess fluid.
People have asked me what I thought when the specialist brought up the possibility of my baby having Down Syndrome, and when I think back to that time I believe I almost immediately dismissed the thought. I did this because I mistakenly thought that you could pick up on the facial features of Down Syndrome in an ultrasound. The other two thoughts had been: “I’m too young to have a child with Down Syndrome,” and “There is not a history of Down Syndrome on either sides of our family.” What I found out later is that both of these thoughts are myths associated with the occurrence of having a child with Down Syndrome.
As time went on, I was a dutiful patient by going into my midwife’s office twice a week to get strapped up to this contraption that measured my baby’s heartbeat. Almost every time that I had these non-stress tests, I would “fail” them (whatever that meant). The first time that I “failed” this test, my husband, Sam and I were freaking out. It didn’t help that we had an OB/GYN filling in for our midwife who scared us by saying something like, “Well the results of this test could mean nothing, or it could mean that your baby may not live through next week.” Of course, we only heard the last part of his sentence! After I “failed” these tests, I had to go in for what is called a biophysical profile. Basically, I had to do a quick ultrasound to make sure that the baby was doing fine. Luckily, the baby “passed” all of the biophysical profiles!
My midwife continued to worry about my ever-growing belly. She indicated that if my fluid level continued to grow, I would be at risk for pre-term labor. The magic number for the baby to shoot for was 37 weeks. Also, in the midst of this scare, the midwife had to consult with the medical director of the facility about my complications and they decided that a physician should be following my case and ultimately deliver the baby. This was pretty upsetting to Sam and I, as we had wanted my delivery to be as non-invasive and natural as possible.
Well, it turns out that the baby listened well to the midwife’s instructions (that may be the only time that she listened well). Somehow she arranged things in my body so that my fluid levels went back to normal about a week before I delivered her. At this point we checked with the doctor to see if he felt comfortable with a midwife delivering her. The doctor gave the green light and everything seemed to be going as planned since I had passed the 37-week mark without a problem.
Around 1:45 a.m. on Monday, June 19th my water broke while I was sleeping. What a way to wake up, huh? We called Pam, (luckily she was on-call) and she told us to go to the hospital. Shortly after we arrived, they started inducing me around 3:30 a.m. Things were going smoothly up until around noon. I became more and more uncomfortable and was experiencing major pain. I had hoped to tough it out without drugs, but I just couldn’t do it anymore especially having little sleep and nothing to eat since around 5:00 p.m. the previous night. I ended up begging for an epidural and received one fairly quickly. That was probably the best thing I could have done since I was able to get some sleep and the labor seemed to progress a lot quicker after this.
I started to push around 8:00 p.m. This was a lot harder than I thought it would be. I was so tired and weak and had a hard time pacing my breathing. Pam decided that we should take a break after about a 1⁄2 hour since the baby did not seem ready to make her entrance. I rested for about another couple of hours and we tried again around 10:00 p.m. This time the baby seemed ready for the world, although when she was just about to come out her heart beat dropped to about 80 beats per minute. The rest of this time is like a blur. All I remember is someone giving me oxygen and the doctor rushing in and saying something like “we’ve got to get the baby out.” Also a bunch of people came rushing in the room, which I later found out, was the NICU team. It turns out that the cord was wrapped about her neck and the doctor had to deliver her with vacuum assistance.
I was so worried after she was born. I kept asking, “Is she alright?” I got my answer pretty quickly when my daughter let out this loud wail! She definitely let everyone know how she felt right from the beginning. Sam recalls the neonatologist making a comment about her eyes saying “her eyes are slanted.” Both Sam and I dismissed this comment, and after she was examined we basked in the glory of our adorable and healthy daughter who we named Michaela Marie.
The next morning the pediatrician came in to give us the report on Michaela’s health status. He stated that Michaela was “floppy” and he ordered some “chromosome tests.” As soon as he said these things, my mind went immediately back to my appointment with the specialist who had said there was a slight possibility of our baby having Down syndrome, although I still could not believe that this could happen to our beautiful daughter.
Shortly after the pediatrician left, a genetics specialist and a genetics counselor entered our room. They elaborated a lot more on what the pediatrician was skirting around. The geneticist explained that Michaela had many of the features that a person with Down Syndrome typically had, including the slanted eyes that the neonatologist had commented on, and he was pretty sure that Michaela had Down Syndrome. He stated that the only way to be 100% sure that Michaela had this was to complete a blood test and it would take about 5 days to learn the results. Both the doctor and the genetics counselor offered to bring us some literature on Down Syndrome if we were interested. We told them that we would like this information to prepare ourselves if in fact she did have this Syndrome. Looking back, Sam and I truly appreciated the approach that this doctor and counselor took with us. They seemed genuinely concerned about our well being; yet respected our privacy and allowed us to grieve.
Unfortunately not all of the people we dealt with in the hospital had the same approach with us. I think the worst experience occurred shortly after our first visit with the genetics team. Sam and I were trying to absorb the concept that our daughter may not be the child that we had expected and wanted to be left alone to process this information. Instead, a lactation specialist entered the room to talk with us about breast-feeding issues. I distinctly remember one of the first things she said in an irritating tone was, “So I hear you have a downy baby.” I pretty much tuned out anything else this woman had to say because I was so angry with her for saying that word “downy,” and for concluding that our daughter had Down Syndrome when we hadn’t even received the official diagnosis yet. At the same time that this annoying woman was in my room my nurse and several nursing students came in my room to check on me. I couldn’t take it anymore and I wailed like I had never wailed before. It was just too much to hold in. The lactation specialist finally got a clue and said something like, “she is overwhelmed.” I thought to myself, “What gave you that idea?” Everyone left the room and my husband let me sob for a few minutes. After I sobbed, I looked at Sam and said, “we are going to love her no matter what” and Sam said something like, “you took the words right out of my mouth.”
We were unable to take Michaela home from the hospital until 2 1⁄2 weeks after her birth. She had jaundice and the doctors suspected that she had a rare intestinal infection, which was treated with intravenous antibiotics. While Michaela was in the neonatal intensive care unit (NICU), Sam and I spent a lot of time with her and read all of the information we had about Down Syndrome. On about the fourth day after she was born, the genetics team came to the NICU to share the results of the blood tests. By this time Sam and I had already resigned ourselves to the diagnosis, although I think talking with the team made us feel a bit more reassured. The doctor and genetics counselor were very realistic with us and told us that they did not know how delayed Michaela would be, however, informed us that a lot of individuals with Down Syndrome were employed, had fulfilling relationships, and some went to college. The main thing that I remember them saying repeatedly was “she is a baby first,” and “she will be more a like other babies than different.” To this day I still remind myself of these things whenever I am dwelling on Michaela’s diagnosis and these sayings help put things into perspective.
Right before I became pregnant with Michaela, I started a new job working with children who have special health care needs. Before I went on maternity leave, I had serious thoughts of looking for another job and possibly another career since I felt like my job was not challenging or fulfilling. I felt like I was going through the motions and wanted out. Needless to say, after Michaela’s birth, all of that changed. Now, I have so much more passion for my work and the families and children that I serve. I go the extra mile and even anticipate more of what these children and families will need in the future. When people ask what led me to my job I usually tell them that it was Devine intervention and Michaela was my angel. She has also taught me to let go of the perfectionist tendencies that I had toward almost everything that I did. I still have flashes of perfectionism, however, I’ve realized that I need to accept Michaela for who she is and realize that she will accomplish great things in her own time.
Michaela is now 1 1⁄2 years old. I can’t imagine not having her in my life. She is turning into a ham like her daddy and is stubborn like her mommy. She is learning sign language to communicate and is using up to 4 different signs. She is also slowly but surely moving around to get what she wants and is very good at getting others (particularly grandma) to get things for her.
I think the only thing that I have regrets about is how I felt after Michaela’s birth. Almost every time I think about her birth, I feel like crying. I know that most moms would say the same thing, but I don’t think that most moms cry for the same reasons that I cry. I cry because I feel like I lost valuable bonding time with Michaela. I cry because I wanted the birth of my first baby to be a joyous and celebratory occasion. I cry because I was so focused on this ideal baby and lost sight of the beautiful blessing right in front of me. I say all of these things in hopes of reaching out to other mothers who are in the same situation that I was in. Rejoice in your new little one and let go of your expectations. Your child will help you develop new expectations and will help you realize that the “ideal” is not what it is cracked up to be.
Shannon

Jack
Initially when I learned Jack had Down Syndrome, I cried. I cried out of fear and uncertainty. How would I guide Jack in becoming an independent and productive individual? Who would protect him when I am no longer able? Then, one evening, I stood in the hallway and watched Jack’s 4-year-old brother stroking Jack’s head and singing an original tune, and the words went something like this: “Don’t worry, Jack. You will never be alone. I will always be with you because you are my brother and I love you.” From then on, the signs poured in that we, as a family, would figure out how to help Jack grow and be happy---just like families do with any child. And, frankly, despite the challenges, it’s been easier than expected because Jack is so warm and affectionate, easygoing, inquisitive, funny, pleasant, responsive, spontaneous, energetic, attentive, and eager.
Although non-verbal, Jack understands English and Spanish, and communicates in sign language. He loves all types of music and dances to salsa, reggae, and pop. He plays the piano and xylophone. He likes to play ball, chase, and peek-a-boo. He likes to swim, take walks, and play at the park. He smiles from ear-to-ear and laughs from the gut. With his miniature cleaning supplies, he helps clean house. When his brother builds a fort with the living room furniture, the three brothers roam over, under and through their make-believe cave. When the grandparents, aunts, uncles, and cousins visit (which is often), he is their welcoming committee. When they bring him gifts--- which is also often---he signs “thank you.” Jack is capable and Jack is not alone. Extended family in Peru, South America, sends Virgin Mary medallions, hand-knit sweaters, and stories of encouragement. Grandparents, Auntie Crissy, cousins on both sides of Lake Michigan, and therapists play with him on our living room floor. Many have rallied on Jack’s behalf and all let him know that he is loved.
Before we married, my husband and I had worked a great deal in public service. We were both U.S. Peace Corps Volunteers in the heart of Africa, digging wells, planting fields and building schools; I had taught swimming and gymnastics to children with special-needs, and reading and math to refugee children. After studying five foreign languages, I thought it would be neat to learn sign language. My husband, too, took sign classes, and has worked with children and adults with developmental disabilities. He has said that he believes that all his life he has been preparing for Jack’s arrival. He was right. Jack chose us to be his family. He made a wise decision. I still cry sometimes, not out of fear, but out of hope, relief, awe and excitement. At his birth, I wanted to hold Jack forever so that no harm could ever come to him, but now I see just a glimpse of how much he will give back to the world and it is so much. The world is lucky to have Jack and my family is so honored to have been blessed with our Jack with all his challenges and triumphs.
Barbara, mother of Jack Eduardo Pirrie

Emma
The Little Things in Life
I’m driving my daughter, Emma, home from a doctor appointment and I can’t stop myself from continuously glancing back to see her in her car seat. I couldn’t wipe the smile from my face if I tried. After two years, Emma has finally reached the 20 pound limit required to allow us to switch her out of her infant carrier into a car seat facing forward. Emma is really enjoying herself, alternating between looking out the window and looking at me squealing with joy. I feel such a sense of appreciation that she has finally made it to this milestone. When my older son, Luke, hit this milestone over four years ago, it wasn’t the same feeling. At that time for me it was just another random step of progression. However, for Emma it’s a world of difference and something that I can really appreciate.
When Emma was born about two years ago, my husband and I learned quickly after her birth that she had Down Syndrome. We were stunned by the news and even more surprised to hear that she needed to be transported almost immediately to another hospital. From there, we were on a roller coaster of emotions and experiences as we were faced with various health problems, including a surgery when Emma was one week old because her intestines were blocked. She spent 5 weeks in the NICU and had to go home on a feeding tube. Over the course of two years, we’ve dealt with a variety of Emma’s health issues, most notably, a severe heart defect that has resulted in three surgeries to date, with one more expected within the next year. Needless to say, it has not been an easy couple of years, however, Emma has given us the strength to get through it all.
Emma is a smart, adorable and determined little girl. She has bounced back from every obstacle in her way, and keeps amazing me with her resiliency. She brings so much joy to our lives and from her I have gained a much greater appreciation for life and God’s gifts to us. Every time Emma learns something new, she is so delighted with herself and her enthusiasm is contagious. I have found that I laugh more…I smile more…I just enjoy all the little things that life has to offer. Just as in the case of her car seat, Emma has showed me that sometimes a goal has to take a little longer to achieve in order for us to really appreciate and value it. I wish I had known all this back when Emma was born, for maybe I wouldn’t have cried so much at that time, however, the important thing is that I’ve learned it now. Emma is a gift that has positively impacted my life in so many ways and I’m thankful every day to be her Mom.
Written by: Valerie (Emma’s mother)

Kira
Our daughter Kira was born January 23, 2006. She was born at 4:30 in the afternoon, 20 inches long and 8 lbs 1oz after only 2 1⁄2 hours of labor. She was also born with Down Syndrome. Kira is an inspiration. In a word, she is Amazing. She is already a strong, determined and stubborn little lady who never ceases to astound me. At 8 months old, she had a cardiac catheterization procedure to fix two holes in her heart – 6 hours later, she was standing up (with help from Grandpa), smiling, and yanking the monitor leads off her chest. You would never have known that she had just had a heart procedure.
Kira always has a smile for her loved ones, a smile that lights up her whole face and makes you forget about everything else. Nor is she shy about letting you know when she's not happy or when she's hungry – in fact you can't do anything else until you address that concern. She's made our family stronger and happier. John, Lucas and I, as well as her grandparents, aunts and uncles all love her dearly.
As Kira continues to grow up, it is so much fun to see her personality shine! She is affectionate and exuberant. I had someone say to me recently how loving children with Down Syndrome are and Kira is certainly that and much more, but just like any other toddler she is alternately loving and defiant and sweet and stubborn. Let's just say that she is definitely two.

Max
In our world, the sun and moon rise and set to our son, Max. In the fifteen months since he was born, Max has enriched our lives and that of our families and friends. It’s amazing to think back to when we received our prenatal diagnosis of Down syndrome. It was a time of great uncertainty and yes, worries.
We experienced conflicting reactions from people. Some doctors insisted that our lives would be forever changed… for the worse! Many people also told us that children with Down syndrome are perfect angels. It was hard to know which one would come true. What we have discovered is that neither is exactly true. Although Max is an “angel” in the calendar, Max is every bit a little boy with a mischievous streak a mile long. He loves to bang and dump anything he can get his hands on. As quick as a flash, he can snatch your glasses from your face (just ask his mommy, Sarah)!
Max is a sweet little boy. He loves giving his friends and family big kisses. You’ll know when you got a good one – he’ll scream right after he lays one on you. We’ve also noticed that people are naturally drawn to Max. Many times, people are left smiling or giggling. We don’t know how he does it, but he touches everyone’s heart in a positive way.
Max is a tough little boy. He has fought through some difficult times with the will and strength of ten men. His strength and persistence amazes us every day. He is a true inspiration.
Most importantly, Max is our son. As it turns out, Down syndrome is just one piece of who Max is. Like any parent, we love each and every part of him and wouldn’t change a thing. He shows us the love and affection of which every parent dreams…and for what more could anyone ask?

Madeline
Maddy’s Story
Determined, Strong, Patient, Fun, Curious, Loving, Happy, Absolutely Perfect! These are only a few of the characteristics that describe our daughter, Madeline “Maddy” Grace.
She takes the “big girl bus” every morning to and from school by herself for 40 minutes to attend a fantastic preschool that she loves. She blows kisses and gives hugs to the bus driver and teachers when she sees them and waves to them when it is time to say goodbye. She knows sign language, and is very capable of communicating her feelings and wishes. She is enrolled in two gymnastic classes and a swimming class. She has good friends at school, adores her older sister Sarah, and is completely enamored by her 7 month old younger brother, Liam. She loves elmo, cookie monster and watching little einsteins. She has an amazing sweet tooth and laughs hysterically when her daddy throw peas up in the air and catches them in his mouth. Maddy likes to sing, dance, play with toys, tackle her daddy, kiss her brother and wrestle with her sister. Pretty typical of a 3 year old, right?
3 1⁄2 years ago, my husband and I would have never thought that any of the above would be possible. Maddy was born on October 30, 2004, following a scheduled c-section delivery. She was one day old when her Pediatrician entered the hospital room for the first time for his scheduled visit. My husband had gone home briefly to be with our then 1 1⁄2 year old daughter. I remember looking at Maddy lovingly as she slept in the hospital bassinet, when the doctor said the most heartwrenching words I would ever hear. “Your daughter has characteristics of Down Syndrome.” I looked at him and said, “Huh?” I could not tell you exactly what he then said to me, except he was mumbling something about the lines on her hands, and her ears and eyes. I do recall him saying he would be back in the morning. And then he left. I was alone. I looked at my daughter and began to cry. Not just a wimper of a cry, but a big, long, teary cry. Funny, I remember that there was the hospital dinner in front of me, and I pushed the tray away from me. I felt a sickness in my stomach that I would never forget. I was hurting. I sat down on the chair, called my husband and told him to immediately come back to the hospital and that the doctor said that Maddy had Down Syndrome. To this day, I could not tell you what, if anything my husband said to me over the phone. Although, knowing him, I am sure he was trying to console me and tell me that everything would be okay. I told him to get to the hospital immediately. As soon as I hung up the phone, there was a knock on the door. It was the shift nurse. She apparently spoke to the pediatrician, who had informed her of Maddy’s diagnoses of Down Syndrome. She entered the room, saw me wiping my eyes and nose with a tissue, and she said to me, “What a bummer.” Yep, that is exactly what a shift nurse at one of the most reputable hospitals in the city of Chicago said to me. I know this is going to sound crazy, but it was at that exact moment that I knew that I would be Maddy’s strongest and most outspoken advocate. “Please get out of my room” was what I said to her. I then looked at my daughter, picked her up from the bassinet, and promised her that she would always be taken care of. After leaving the hospital, it took 2 weeks for the diagnoses to be confirmed. But by the time I got her home and had done some research, I knew she had Down Syndrome. Getting the confirmation over the phone from the doctor was not a surprise.
At that time I made a conscious decision that I was done crying, and I was not going to mourn the loss of a child that I thought I was going to have. I was going to embrace this wonderful little girl and give her as much love, attention and guidance that I could give her. She deserved it. Within 2 weeks, I had contacted Early Intervention. Within the first 12 weeks of life, Maddy was receiving in home speech, occupational and physical therapy. I had also enrolled her in private one on one therapeutic yoga sessions. After continuing my research, I knew that we were fortunate. Maddy was born completely healthy. Luckily, she was able to be breastfed, and there were no sucking/swallowing problems. I had read statistics regarding heart problems, thyroid complications and possible surgeries, and I could only think, how fortunate we were. I could not believe the amount of support that I received from my family and my husband’s family. There were no, “I am so sorry about Maddy.” There were only, “She is beautiful, congratulations.”
Those first 2 months were not easy for us, my husband and I were in a fog. We knew that we had to take care of Maddy as well as her older sister. They both deserved a mom and dad who were available- physically and mentally. We were not going to let either of them down. We decided to let some sunshine in, and slowly, our home began to be filled with joy, laughter and love all over again. Maddy has given our family complete joy, and has brought us together more than she will ever know. Maddy may happen to have Down Syndrome, but having Down Syndrome is not a limitation. As parents, we guide her, rear her and teach her how to enjoy life every single day. The funny thing is, she teaches us how to enjoy life every single day. She has taught us to not get upset about the little things in life anymore, and we don’t take things for granted. She can do everything that a “typical “ 3 year old can do, just at her own pace. Her pace may be a bit slower than other children her age, but give her time… her pace will definitely pick up!
I should probably end this letter now. I hear all three of my beautiful children giggling, screaming and having a good time in the play room- who in their right mind would not want to be a part of that?

Veronica

Veronica is now 4 years old and every year I write this story about how she has impacted the world, not just our family’s world, but the world as a whole, I have so many thoughts I can barely write them all down.
Veronica doesn’t know she has Down syndrome, not just because she is 4 and doesn’t understand the concept of having Ds, but she believes she can do anything she puts her mind to. Every time I actually start to feel there is something she won’t be able to do - she proves me wrong. Her mantra for life will always be “on my own terms”
I truly feel Veronica can achieve anything in her lifetime because she has friends and family who accept and uplift her for who she is, we don’t try to change her, (nor would any of us want to) but instead we celebrate all of her accomplishments and put no limits on her future.
Four years ago when I wrote her story I mentioned how the first thoughts I had when Veronica was born was that she would never run a race with me. Once again she is proving me wrong. Not only is she running, she is also an avid swimmer (diving and swimming under water are her favorite things to do) and loves to ride her bike. Running a race won’t be enough for her; she will be doing triathlons with me!
Instead of seeing a little girl with a disability all I see are unlimited opportunities. The sky is the limit for her.

Sarah
You know the saying “Be careful what you wish for?” Well, I have another spin on it, “Be careful what you pray for”. What seems like oh so long ago, before having children, I would try every day to pray “Please God, help me to become a more patient person.” I envisioned his answer to be a sprinkling of magical patience dust along with his grace and, poof, I’d be more patient. Well, he had other plans and blessed me with a daughter who has Down syndrome. It took me several years to realize that she was the answer to my prayer, but I’ve no doubt that she was. I think back to when Sarah was little and we had to work so hard with all of her therapy exercise. Just when I’d think I can’t do it anymore, she would get it and it would all be worth it. I remember the first time she signed “more”, it was so thrilling but it came after 6 months of patiently signing it to her first. I also vividly recall when she was about 4 and learning to buckle her own car seat. It was still the 5-point harness, a task my sister couldn’t quite manage on her own but Sarah was determined. It took every ounce of patience in me to wait while she did it, knowing I could have it done in a snap and knowing we were late for wherever we were off to. In the end, those extra 5mintues of patience were so worth it to see the pride in her face of doing it herself. Now my latest attempt at patience is allowing her to dress herself each day. Buttoning her pants, and buttoning her sweater, zipping and snapping her coat take time on her part and patience on mine. Each time she says “Look mom, I did it” and once again, the extra time and patience are well worth it. Am I patient all the time? Absolutely not! I still lose it more often than I’d like to admit but I am definitely a more patient person than I was 8 years ago when Sarah came into my world. So, be careful what you pray for, it could just more than you ever expected!Submitted by:
Lora
Sarah’s Proud Mom

Jayce
MY STORY ABOUT JAYCE
It is hard to describe my child with words. ‘What a surprise”. He is my heart and soul. We did not know that we were going to have a child with Down Syndrome because I chose not to have the testing available to detect such disorders. I didn’t want to know I just wanted a baby. Well that’s what we got the Happiest little man in the world. There is not one day that goes by that he doesn’t make us laugh. I was so scared when he was born because I really did not know anything about the disorder my biggest fear was that he would not know that I was his mom and that he would not know that I loved him or be able to love me back. Well how wrong was that he loves not only me but just about everyone. At the beginning I watch him so closely to see how he was different from my other children and what he couldn’t do because of his disorder and I once I decided to
quit watching how he was different I realized how much he is the same.
Laura

Lily
Like a lot of parents, we had the wonderful surprise in the birthing room that we were to raise a child with Down syndrome. I believe we were a little more fortunate than most in that we had positive supportive people around us. Lily’s grandma, who was in the room when she was born, was nearly jumping up and down with joy. For many years she was a school nurse at a grade school in Naperville. She knew what a great gift we were just given. Lily’s dad had mentored piers with Down Syndrome when he was in Junior High. When Lily was born, he was scared because he was aware of the health risks, but overjoyed because he knew the love and honesty he was going to get from his little girl.
This is something I, Lily’s mother, want every family to experience from the first moment they are blessed with a child with Down Syndrome. Lily has made this an easy task for me; Spread this awareness of what Down Syndrome really means.
It hit me most when I went to my OB because I was pregnant with our second child. Lily was with me; she always is. The doctor sat back and said to me, “I remember a lot of deliveries but I will never forget Lily.” He too was so amazed at the positive air in the delivery room. Then, once again, when I went back because I am now pregnant with our third child, the same doctor had to comment about the delivery. And then this time how impressive Lily is. His whole experience with our family and his interaction with Lily has changed his world. He flat out said to me that in the past he would consult his patients in a somewhat grim and negative way when they found out they might be having a baby with Down Syndrome. “I used to see Down Syndrome in a very different way coming out of med school and in practice than I do now. It really is amazing what these kids can do.” I will never forget that. And hope that with Lily’s way of touching people’s lives, many more people will see the beauty in people with this ‘disability’.
From the moment Lily was born she has been touching peoples lives in small ways that is just enough to warm their hearts and make them smile. Lily spent 7 days in the NICU when she was born. During this time her dad and I would travel back and forth from the hospital frequenting a diner for meals. The first morning we stopped for breakfast our waitress asked about our hospital bracelets. We choked up as we filled her in on our overwhelming news. She gave us strong words of encouragement and every day we were there she asked about Lily. The day Lily got to go home we gave her a picture of Lily. She was very excited. We really didn’t realize what this meant to this person until we go back to the diner and she still has Lily’s picture on her. We still don’t know what it means to her, but we do know it makes her smile.
Lily has been going to school for three weeks now and it only took three days for her to have every teacher and aide poking there head out to say hi and bye to her everyday. One lady said to me as I picked her up during her second week, “Lily is so beautiful, inside and out.” I couldn’t think of much of a response other than, “I know.”
Lily has helped us see that we are the ones with a ‘disability’ and that we should all be as open, honest, and passionate as she is. Lily is the most amazing person I know

Ian
My name is Kelley. I am an early childhood special education teacher in Elgin’s school district U-46. I have had the opportunity to have Ian Fergus in my classroom for 2 years. He began my class as a shy, timid, stubborn little person in September 2006. During circle time activities Ian would look down when called upon, cover his face and eyes as if we couldn’t see him. I worked diligently to get him to participate by using pictures so that he didn’t “have” to talk in front of the others, singing silly songs before group time, having him sit in front and only look at me . While talking with Ian’s parents, they informed me that he talks a great deal at home and at “Gigi’s Playhouse” place. I was happy to hear this news but I still wondered what I could do to make a difference in his educational experience. Ian began to get more comfortable as the year progressed but he still didn’t show his true self, I knew there was so much more in there to share.
It was now time for another school year but this time all the children in my class would have IEP’s and special education services. This new structure concerned me. I was afraid that the other children would be functioning much lower than Ian and he would never come out of his shell and socialize with his peers. I was wrong! The children have a variety of abilities and Ian is having a great year. Ian’s mother has come in on many occasions and brought books that Ian likes to read to us at group. They even came in and taught us how to “fish” using real fishing poles. The children talked about the fishing with Ian for a few weeks later. I used Ian’s academic strength to help promote his social esteem. He is academically prepared so much more than many other children in our class for kindergarten. During circle/group time Ian participates and announces to the others what letter starts a word, which letter makes a certain sound, what the picture means for our daily message or what he did last night.

Erin
This would have been a very different essay if it had been written 3 years ago when our daughter Erin was born. Despite her small size, and coming from a quiet, reserved family, Erin lives life large. She loves large—whether shopping for friends at the grocery store or welcoming family and friends to our home. She explores large, climbing on the school bus with a backpack and smile, excited to be on a new adventure. She parties large—a small birthday party for charity turned into a media event for 150.
So, when it came to Down Syndrome, we did that large too—using the medical concerns chapter of Babies with Down Syndrome: A New Parents’ Guide as a checklist for complications. My husband and I joke that we obtained a medical degree through independent study.
Somehow we all survived and realized that while the growing was hard, we really appreciate the growth Erin has brought our whole family. A large amount of maturity—not to mention humility—comes in realizing that what we had feared the most was exactly what our family needed.
At a conference, the term specially needed was used instead of special needs. Certainly, our family specially needed Erin to help us set priorities and to experience a deeper more fulfilling life. The world specially needs children like Erin to remind us of what is important and to gain a deeper understanding of perfection.
I have no doubt that someday Erin and her friends will share their own story. Until then, our family will do all we can to help the world hear the message our specially needed people bring.

Benjamin
My son Ben was born six years ago on January 4, 2002. The doctors and nurses in the delivery room immediately suspected that he had Down syndrome. When I think back to that day, I remember how difficult it was to hear the news. Lately, though, I can’t help thinking about how much more difficult that moment would have been if Ben was born a generation earlier.
If, for example, I had been born with Down syndrome, my parents would not only have been given a difficult diagnosis, but would also have been advised to institutionalize me immediately. They would likely have been told that to keep their new baby would be damaging for themselves, their careers, their marriage, their other children and for their newborn child. They might have been told that their baby would not talk, would not learn, would not be toilet trained and certainly would not contribute to the world in any “meaningful” way. If they were like most parents in that situation, they would have said goodbye and gone home without me.
The doctors that would have advised my parents to institutionalize me would certainly have done so with good intentions, thinking that they were doing the right thing. If my parents had chosen to institutionalize me, they too would certainly have done so only if they believed that they were doing the right thing. But both the doctors and my parents would have been making those life-changing decisions based on bad information.
I’m not sure that I can say that Ben is lucky. While Down syndrome brings a number of wonderful qualities to the whole Ben picture, it does make many basic things a lot harder for him.
I know for sure, however, that I am lucky. I am lucky because my wonderful boy is growing up, not in an institution, but in our creaky old house, with his parents, sisters and his beloved dog Henry. Because he sleeps in his carefully decorated bedroom, with his vast collection of toys. Because he’s been to Disney World four times and vacations each summer at his grandparents’ cottage in Michigan. Because he blows out the candles at his birthday parties, fights with his sisters and asks for a playdate with his friend Zach almost every day. Because he attends a wonderful school where the people who work with him believe in all that he can do. Because we know that he will learn to read, that he will, hopefully, attend college and find employment and create an important life for himself. Most importantly, because we have been given the chance to have Ben as a part of our family, to love him and to be loved by him.

Rylee
By: Aunt Susie
When my brother & sister in law got pregnant with there first child Madison, I was blessed to be able to leave work to care for her, so when they got pregnant with there second child it was just a given that I would care for her as well. We did not know that she had Down syndrome prior to birth, and even then with her medical issues I believe that the fact that she had it took a back seat, something we didn’t have to think because there were so many other things to deal with. We have a large loving family so I know that no matter what we would deal with it ALL. And so we did. I can’t say that it was always easy, I know there was a few times in those first weeks when my brother would ask “Why me?” And I would say “why not? what makes you so special?” Now I know that he is special because he gave me Rylee. After all her surgeries and finally getting her heart strong enough to start with what my family liked to call “Baby Boot Camp”. I took all the (good) knowledge from reading every book I could about DS as well as the advice from therapists and worked her body and challenged her mind, while she engraved herself in my soul. Before she was up and running, which is where we are at now. I would sit and look in her eyes for hours. She was special I had no doubt about that. My husband has a saying “you don’t know what you don’t know” and I never knew how true that was until Rylee. She doesn’t know that she is suppose to be delayed in any way, she doesn’t know that society has put limitations on her without even knowing her, she doesn’t know about being prejudice or judgmental and I hope that she will never know these things.
She does loves to run, dance, throw her toys all over the house, pull you in with her sweet little smile and her kissy lips out just to pull your hair or give you a whack and then to sign “sorry” and give you the kiss you were going for in the first place. At 18 months she was starting to walk, she knows and uses well over 30 signs, her first sign was one that she did on her own to say “she loves you”. She is speaking new words every day, she can master almost every challenge (she thinks its playing) that I give her. She isn’t quite potty trained yet but she likes to sit on it and pretend so that we can do the “potty dance” after words.
And as for what she has taught me, it’s hard for me to put into words or even on paper. I cannot imagine my life without her in it. She has taught me to be more patient, kinder, and less judgmental and as whole has made me the best person I could ever hope to be. I am proud and blessed to be her Aunt.

Evelyn
My story about how Evie has impacted my life if pretty brief and basic.
I was sad for a few days maybe even a few weeks but I wasn't as much so sad as I was just afraid....afraid of what the future held for Evie for me, for my husband, for my family.... My husband and my faith became my rock and Evie our savior.
I can honestly say that I haven't been sad or afraid ever since. We are all
confident that Evie was sent to us to save us....to make us better people,
more caring, more genuine. She taught us that love is very simple, boundless, and unites couples, children, families, friends and strangers.
We will never take for granted each and every Blessing that we have been given. Evie is our gift, we peeled off the wrapping and found something wonderfully perfect inside.
If I were my child's voice my message to the world would be to take time to
trust, love, and SMILE. Life is short and much better when you are
happy...with whatever God gave you. One more thing I am sure Evie would say if she could talk would be THANKS...to so many caring compassionate
individuals we had the privilege to meet and work with since the day she was born! No good deed goes unnoticed.
October: EdwardMy husband and I often think when parents are told their unborn or newly born child has Down Syndrome they should spend a day with our son, Eddie. We can almost guarantee their fear would be replaced with hope and their tears would be replaced with laughter. They would meet a 4 year old boy who loves books and “reads” them out loud to his favorite baby doll; plays with his “little people” with such enthusiasm that you can’t help but want to join him; is fearless when he rough-houses with his eight year old brother, Coleman. Eddie would show them his classroom with great excitement, as he leaves his mom at t he door with a wave and a huge smile; he would teach them the hand movements to his favorite songs and request they listen to “ the Good bye Song” over and over again. Eddie would make sure they celebrate every dog sighting; greet all his neighbors with a brilliant smile and a hug or a wave. Eddie would challenge them to a tackle football game and then build a cool lego building. These new parents would then watch Eddie help his mom empty the dishwasher and set the table. Finally they would learn that it is dangerous to be between Eddie and the door when his dad comes home. We believe these new parents would leave our home and conclude, as we have, that heart surgeries, therapies and any developmental delays are small price to pay for having Eddie in our lives.
By: Cathy (his proud Mom)

Sophia
Sophia likes to do everything we do. She likes to play games, draw pictures, and have fun with her friends. She goes to school and has homework just like us. She is lucky because some kids with Down syndrome have trouble talking but she talks really well. She is also very smart. I love my sister and it hurts me when some kids look at her face and laugh or stare. Kids with Down syndrome look alike but they also look like their family members, too.
I think everyone should be nice to Sophia because she is an ordinary kid. We are all human beings and God put us all on Earth. We should all be treated the same. I think we should be extra nice and helpful to all kids with special needs because it is harder for them to learn and grow up.
I feel really lucky to have a sister like Sophia.
Mira

Bret
Written by: Big brother Alec
Bret inspires me in many ways. I love the way he can always be himself and doesn’t care what anyone else thinks.
He is a normal person. Even if he does have Ds, so what!
If Bret has his mind set on something, nothing is going to stop him.
He is loving, caring, smart, selfless, and a great person. He’s my little brother and I will always love him.

Sam
Sam’s Story
I’ve written stories about Sam throughout the years since he was born and I’ve usually mentioned the shock and sadness turning to happiness and pride as he reached each milestone.
Now that Sam is 7, that all seems like a far off memory. Sam is 100% Sam and I rarely think about the fact that he has Down syndrome. The only way I can describe him is “pure joy with a little mischief mixed in”. He greets each day and each person with a genuine smile…Not just a smile but an “I’m so happy to see you smile”.
He’s blessed to have two older brothers that have paved the way at school. Sam walks down the hall and says hello to teachers, students, and even the custodian. Amazingly, he usually remembers everyone’s name.
Sam loves to swim, ride horses and play baseball. There is not an activity or sport he won’t try. He loves to participate but is also the most enthusiastic fan in the stands at his brother’s football games!
I’m realistic in realizing that he has many challenges ahead. Instead of being nervous as I once was, I am confident in his ability to always do his best and have fun along the way.
Sam is my hero…He loves life and I love him!

John & Matthew
A Grandparent’s message
John and Matthew have ready smiles and enthusiastic hugs. They warm our hearts. It is such uncomplicated joy! Each is a gift from God who adds value to our lives. Together with them, we can just relax, be ourselves and enjoy the time. Their sweetness brings out the sweetness in us.
It’s been fun, these 3 1/2 years, watching them develop, grow, and learn. We hope to be a blessing in their lives as they’ve been in ours. We still have much more to learn together about love and compassion. As their lives unfold, we look forward to witnessing the joy they will share with the world.
Grandma and Grandpa J.

Molly
Molly: Our unexpected wonder
After having five boys in less than 7 years, we could hardly believe our ears when we were told during our 21-week ultrasound that our sixth child was a girl. Everything appeared to be fine and we went home giddy and somewhat in shock.
Only a few days later, we were facing the possibility of delivering our princess way too early as our joy turned into fear and worry. A few days of bed rest seemed miraculously to bring an end to premature labor and then a confirming check-up freed Laura to re-enter the busyness of our active household.
But during that same check-up, the perinatologist out of the blue told us he was seeing “soft markers” for Down syndrome. None of these markers were conclusive, but he recommended that we have an amniocentesis done immediately to find out. He could do it in the office right there.
Less than two weeks had passed since we have been given our original great news; now once again we were in shock but this time without the joy. Having just come through a premature-delivery scare, we were hesitant to have an amniocentesis, so we asked the doctor what he would do. He misunderstood our question and immediately recommended that we terminate our baby if she had Downs because he would never raise a child like that, comparing her to his “dumb dog, too stupid to come in out of the rain.”
Horrified, we left his office, never to return.
We went on to celebrate each new morning that our little girl remained inside Mom, and couldn’t help but smile when she naturally went into labor at the beginning of the 39th week of the pregnancy.
While our OB knew what we had been through, the delivery room nurses did not. After less than 3 hours at the hospital, Molly Rose arrived in a delivery room full of people who immediately fell silent as she let out her first few cries of life. I looked across the room to see our little girl lying on her back, under the warmer, less than a minute old. Her neck was so thick — “like a football player’s,” one person described this “marker” — and I knew immediately that she had Down Syndrome.
Everything inside melted as my heart celebrated the awesomeness of yet another life coming into ours accompanied by the many questions that now raced through my head: How much help would she need? What kind of health complications would she have? Would she ever marry? Would she die before my wife and me? Would she be able to care for herself or would we have to find someone to care for her once we are gone?
We didn’t call our parents right away like we had done with each other child. We needed time to adjust, I think. People didn’t know what to say: Congratulations or I’m so sorry. It was awkward, amazing and somewhat sad.
We have been so blessed by Molly entering our family and our lives. Her health has been great and her spirit greater. I’ve learned that those questions that plagued me prior to and at her birth have the same answers for Molly that they have for our other “normal” children: We don’t know. In fact, Molly has taught us to redefine “normal” altogether. Suddenly, we’re celebrating a first smile, rolling over, sitting up and countless other moments we had been taking for granted with our other children.
Each of our kids experiences his (or her!) own joys and faces his own challenges each day of his life, including Molly. We don’t need to worry about her; we just celebrate every moment we have with her, the many ways she is already enriching our family life and all that she means to us!
—Tom

Ian
My name is Kelley Thomas. I am an early childhood special education teacher in Elgin’s school district U-46. I have had the opportunity to have Ian in my classroom for 2 years. He began my class as a shy, timid, stubborn little person in September 2006. During circle time activities Ian would look down when called upon, cover his face and eyes as if we couldn’t see him. I worked diligently to get him to participate by using pictures so that he didn’t “have” to talk in front of the others, singing silly songs before group time, having him sit in front and only look at me . While talking with Ian’s parents, they informed me that he talks a great deal at home and at “GiGi’s Playhouse” place. I was happy to hear this news but I still wondered what I could do to make a difference in his educational experience. Ian began to get more comfortable as the year progressed but he still didn’t show his true self, I knew there was so much more in there to share.

It was now time for another school year but this time all the children in my class would have IEP’s and special education services. This new structure concerned me. I was afraid that the other children would be functioning much lower than Ian and he would never come out of his shell and socialize with his peers. I was wrong! The children have a variety of abilities and Ian is having a great year. Ian’s mother has come in on many occasions and brought books that Ian likes to read to us at group. They even came in and taught us how to “fish” using real fishing poles. The children talked about the fishing with Ian for a few weeks later. I used Ian’s academic strength to help promote his social esteem. He is academically prepared so much more than many other children in our class for kindergarten. During circle/group time Ian participates and announces to the others what letter starts a word, which letter makes a certain sound, what the picture means for our daily message or what he did last night.

During work time (play) Ian is asked to play by many friends and we encourage him daily to ask another friend to play. His favorite activity right now is to drive the “mail truck” and deliver mail to his friends. One day this week he was sitting at our group tables working on his written play plan for the day. In order to write a correct plan, you must have the same color marker that the center’s color is that you choose. Another child needed the same marker that Ian had and he said to Ian “ I need that marker”, politely Ian stated back “ there is another one over there” (pointing to the other table). The child continued to tell Ian the same thing so Ian told him again. This was a great for Ian to answer the child and not just give him the marker.

Ian is moving on to Kindergarten next year and I will miss him very much. The receiving school will be very fortunate to have such a wonderful addition to their school, the very supportive family as well as an awesome student!