Proud Fathers Tell Their Story

LOVING LAUREN 

Funny how one little chromosome can change so much in so many lives.   Some call it a disease, others call it a disorder, most call it what it is, Down syndrome.  I call it God’s plan.  When my daughter Lauren was born I hurt all over.  I wondered why this was happening to us.  What did we do?  What didn’t we do?  Why were we being challenged like this? How would this affect us?  How would it affect our other children?  Time passed so slowly.  Minutes seemed like hours and hours seemed like days.  Questions raced through my mind and I didn’t have any of the answers.  I needed answers, or at least I thought I did.  Then it just all became clear. 

Acceptance is a funny thing.  It just falls upon you.  One day you think that you are so very far from it and the next day it is inside of you.  These moments in life can only be one thing; they must be God's Grace alive in each of us.   I have come to know these moments as "Little Wonders" moments.  Too often we miss them or simply don't recognize them because we are too busy looking at the big picture rather than the small details that together make up the picture's beauty.

When Lauren was born we didn't suspect we would have a baby with Down syndrome.  I watched while the nurses cleaned her and tried to assist with her breathing.  Then, she opened her eyes for a brief moment.  My heart dropped as I looked into her eyes and knew at that very moment that she had Down syndrome. I could see it in her eyes.   

For the next 48 hours she didn't open her eyes for more than a second at a time.  It was during this time that life seemed to stand still.  Then suddenly she had a period of time that she was wide eyed.  Looking around taking in the sights, admiring the beauty that surrounded her, her new world.  It was at that time I had another Little Wonders moment and I believe this was the moment of clarity.  I looked into her eyes and was able to see my little girl. She wasn't “a baby with Down’s Syndrome” but instead simply my Lauren Elizabeth.   Her deep blue eyes shined like the morning sun across a glassy lake.

It was then that I could look into them and not be frightened at what I saw but rather now appreciate the gift, my reward.  She wasn’t a test or a challenge from God but rather a reward.  My questions became answers.  I knew that my life would never be the same but now I looked forward to the new experience.  I was sure that my other children would understand acceptance and know love in a wonderful way.  I quickly realized that Lauren had become the teacher in the family and the rest of us students. 

Now, a year later, we continue to learn.  We learn how to appreciate every day.  Approach every day with a smile.  Sure, we have challenges just like everyone else.  But now they don’t seem so overwhelming.  Our family tries to look at life and appreciate it for what it is rather than what we think it should be.   We continue to cherish each other and recognize each of us for what we are, gifts to one another.  Our family’s perspective will forever be changed and I thank God for it.

By, Scott Thompson

STEPHEN SHOWS THE WAY
When our son Stephen entered high school in 1998, we were feeling pretty good about how his life had progressed. It had been a long, eventful journey but Stephen, through his hard work and courage, was included in the regular school system with support, he had a small group of friends, he was involved in sports programs through Special Olympics, and as manager of both football and basketball teams at Shawnee Mission East and he was able to be on his own much of the day. He appeared happy and content. Then one day, with one question, we realized that what had been accomplished was not an end but only a beginning and that Stephen had taken the lead in planning his future.

That day, Stephen came home from school with a flyer to present to us and we could tell he was excited about it. It announced “College Night” for students trying to determine where they might be interested in going to school. At first, I dismissed it and said that I didn’t think we could go, that it really didn’t involve us. I felt terrible but we have never wanted Stephen to have a false sense of what his capabilities are. I continued to think about it and I saw that I had hurt him and he was confused. His brother and sister had gone to college and it had been a huge event in their lives. What made this so different for him? Our philosophy since the day he was born has been that he lead a life that is as much like his older two siblings as possible. So, I reconsidered and I took him to “College Night.” The next day, June and I also began researching to find out if there actually were any post graduate schools for people with special needs.

During the next two years, we visited programs around the country, from California to Connecticut. Each had its advantages and disadvantages. But, we chose the program at Eastern New Mexico University in Roswell, New Mexico because it most completely integrated the students with special needs into the general population, both residentially and socially.

Stephen spent two years in Roswell and loved every minute. Going to college was a tremendous growth experience for Stephen and taught him much in the area of independent living. But, as always, June and I didn’t fully appreciate how much Stephen had grown and Stephen was way ahead of us in determining what his next step in life should be.

While Stephen was in Roswell, June and I had begun meeting with friends who had children of similar age and with similar needs as Stephen. The purpose of the meetings was to exchange information about what Stephen’s life would be like when he returned to Kansas City. But, none of the ideas exchanged during those meetings, which ranged from group homes to buying duplexes or fourplexes, seemed to be a good fit for our son. Consequently, we had begun to believe we might need to start a new program in Kansas City. Plans for that program had not made significant progress, however, before Stephen came home the summer before his last year at Roswell. Stephen’s negative reaction to living at home (for the first time in his life, he developed attitude) convinced us we had better have something in place by the time he graduated.

Through hard work by many parents, we managed to start The Mission Project within a few months of Stephen’s returning to Kansas City. Stephen moved into his apartment (with his best friend as a roommate) in August, 2004. Today, he is gainfully employed at Mission Medvet, works out regularly, attends computer, theater and ballroom dancing classes, participates in Special Olympics basketball and bowling, and receives regular support from a group of professionals hired by The Mission Project. June and I continue to have input through our participation on the Board of Directors and through our participation on various committees.

Being Stephen’s parents continues to be a challenging, surprising, delightful and rewarding experience. When Stephen came home that night and presented the challenging idea of attending college, we were confused about what to do. How do parents negotiate between what their son or daughter is capable of and what is unrealistic? But how can you know what your child is capable of, if he or she never has the opportunity to try? In Stephen’s case, we were fortunate to have located a safe environment that allowed Stephen to begin to become independent. We would never have guessed, that fateful night, that Stephen would be living on his own, gainfully employed, busy with activities and surrounded by friends, just 5 years later. Looking back, I have come to realize Stephen knew all along what he wanted but, to accomplish it, he had to show his parents the way.
By Larry Rouse

AN UNBELIEVABLE BOND FORMED AROUND OUR FAMILY
Kathy and I were “youngsters” when we met and still pretty young when we got married. By the time we were 25 we had three little girls. I can’t tell you how we did it, because it was such a whirlwind and so busy that I don’t remember that much. They were great kids though, and that made life a lot easier. After trying for years to have more children we were blessed with a great surprise eight years later—a son. It was a miracle and we were thrilled, but our surprises hadn’t all been used up, because eight years later from then we get an even bigger surprise, our little girl Olivia was born with Down syndrome.

That day in the hospital I learned the true meaning of “being a man” Our other four children were waiting eagerly in the waiting room for me to come out and show them their new little sister and tell them what she weighed, how long she was and all the other exciting details. Little did they know what all I was really going to be telling them.

But, you know, kids are so smart. I walked out of that nursery with Olivia in my arms, a big ole smile on my face, searching for the right words, and one of my daughters saved me. She said, “Dad there is something wrong isn’t there! I can tell.” And I nodded and said, “Yes, Olivia was born with Down syndrome.” From that moment an unbelievable bond formed around our family and a new type of love developed for this little girl we were holding.

And here I sit, with remote in hand on Superbowl Sunday. Life did not stop and change just because we have a little girl with Down syndrome. There is still a Superbowl and life goes on. Olivia has probably saved my life by making me stop and slow down just a little bit. When she looks at me and says, “dad, sit” I can’t tell her no! As a matter of fact, I get in trouble quite a bit because I can’t say NO very often.
We stay busy here in rural Missouri (well Kathy does and I just help). We just had a great FRIENDS of Rural Missouri meeting at our house on Saturday and shared our children’s first year of school with each other. WE learned valuable things from each other that we can try with our own children to help their school day be more successful. Kathy always runs the meeting and I run the coffee pot and snacks! Works well for us! Of course after 28 years of marriage (Feb 10th), five children and three businesses we have to communicate well and work well together. We have been a team for a long time, but became a stronger team when Olivia came into our life. Somehow we juggle therapies, workshops, conferences, work and kids activities and still like each other.

I think it is great the National Down Syndrome Congress will be in Kansas City this summer. We intend on being there with most of the family and getting as many families and teachers from rural Missouri there that we can, too! Stay warm and if you are ever traveling East on 36 Hwy, stop by our Brookfield McDonalds for a cup of coffee and say HI!!
By Larry McCurry

I AM PROUD OF WHO SHE IS
We have all experienced the unknown of what the future holds when we are given the gift of a child with Down syndrome. We are uncertain if our child will be able to experience or accomplish some of the hopes that we hold for the future of any of our children. Also, will she be able to just have an average childhood and have the opportunity to grow and make contributions to our community?

After Jennifer was born, I knew that she was a child with special needs. However, Dianna and I also wanted to give Jennifer the opportunity to be an “average” child with a “normal” childhood. One of our main goals as parents was to allow Jennifer to try whatever she wanted. Our primary expectation was to “try your best.” Whatever “her best” was acceptable so long as Jennifer had the opportunity and tried her best. Because, doing your best has always been a principle belief for me. One of my hopes is that I have been able to give my best effort in helping Jennifer with her activities.

Yes, Jennifer (and our family) have experienced our share of challenges as she has grown over 12+ years. The most recent example was the transition to middle school, where a new group of teachers had to learn about Jennifer. As always in life, communication within our family and to those who work with Jennifer has been key.

When taking some time to reflect on this column, I realize that there have been many instances where Jennifer had the opportunity to be an “average” child who happened to have special needs. For me as her father, some of the best examples were when Jennifer:
• Was voted by her 7th grade class to best exhibit the character trait of kindness
• Achieved the middle school honor roll for her school work
• Was asked by friends to participate in various activities
• Was recognized by her teachers or coaches for her efforts to do “her best”
• Was recognized by her teachers as an Optimist Club Super Citizen
• Was voted by the Lee’s Summit Girls Softball League coaches to receive the “Blue Darter Award” for sportsmanship
• Has given her best effort

My hope is that I have been able to give my best effort to guide Jennifer and to be there for her. I am proud of who she is, what she has accomplished and what the future holds for Jennifer.
By Paul Neihouse

ALEXANDER MAKES MY HEART SING WHEN HE SMILES AT ME
During the fifth month of my wife’s pregnancy, Regina and I were told there would be a strong possibility that our unborn child might have Down syndrome due to some blood work and markers found on the sonogram, like the thickness of the neck and the shortness of the forearm. For peace of mind we took the Amniocentesis test and on Labor Day weekend 2005, it was confirmed our son tested for an extra chromosome. Last Labor Day weekend or “The Weekend of Tears” as I call it, Regina and I were quite upset about the results however, we knew we had to educate ourselves about Down syndrome and how it would affect our son’s life.

On that Sunday morning, I left a message with the Down Syndrome Guild of Greater Kansas City stating our unborn son tested positive for an extra chromosome and on the next business day, we received a call from the Director of the Guild, Amy Allison. We met with Amy on that Thursday and we were able to tell her about our worries and fears. She listened with a kind ear and understood our concerns before giving us some reading material so that we could begin to educate ourselves about Down syndrome. She also invited us to the Buddy Walk and informed us about a support group in the Northland, called Northland Buddies so we could meet and talk to other families.

Eight months into our pregnancy, Regina was admitted into the hospital on December 2, 2005 because she had toxemia since her body was starting to reject the extra chromosome. The doctor thought my wife would deliver by the weekend; we had to take her to Overland Park Regional Hospital since it was a Trauma 3 level hospital and it was the best place for both of them. My wife managed to continue the pregnancy with bed rest for 14 more days.

Alexander Cruz Esteban entered into the world on December 16 at exactly 4:31 p.m. while the “Little Drummer Boy” was playing in the background. It is moment that I will always treasure and remember. Alexander was not born without complications; he had to a heart murmur that lead to surgery to close a PDA valve, a very high Billy Rubin count which eventually he would have two liver biopsies and Alex had an enlarged liver and spleen.

For the next 62 days Regina and I traveled daily from our home in the Northland to Overland Park Regional Hospital. At first we were hopeful; Alex would be home for the holidays, then by Martin Luther King’s Birthday and then Valentine’s Day. It seemed like every time, Alex took two steps forward the next day he would take three steps backwards. This became very frustrating to us; however, a couple days after Valentine’s Day we received the word from his doctors that he would be released on February 17. Our day had finally came in which we could begin our lives together with our son, Alexander. February 17th is also a special day that we will not forget, since it is also grandpa’s birthday. What a precious gift for grandpa.

It has not been easy for us but with the help of the DSG, the Northland buddies and associating with other families we do not feel so alone. We realize Alexander is always going to be behind but our goal is to have him only a few steps behind verses a few miles. Every day we try to educate ourselves about Down syndrome so Alexander can grow up and become a productive citizen and have a better life. As far as being a Dad that has a child with Down syndrome, there is only one thing I can say about it: Alexander is truly remarkable. I never saw someone that could light up a room like my son can or have so many people drawn and attracted to him. Alexander makes my heart sing when he smiles at me and I feel very fortunate that Alexander came into my life.
By Gabriel Estaban

OUR KATHERINE ELIZABETH HAS BEEN AN INSPIRATION TO US
When I was asked to write this article, I was not exactly sure where to begin, so at my wife Karen’s suggestion, I went through our previous issues of “Connections” and read the “Dad’s Corner” for inspiration. I realized that as diverse as our families are, we all tend to share the same feelings and the belief that, despite the challenges, we are truly fortunate, even blessed, to have been given the wonderful gift of a child with Down syndrome. Our children have helped us to grow and become stronger parents because of them.

We had no idea that Katie was going to be born with Down syndrome because pre-natal testing gave no indication of her condition, and therefore we were not prepared to learn of our little ”Katie Bug’s” possible diagnosis when she was just minutes old.

When Katie was born, I was at a disadvantage because I knew little or nothing about Down syndrome. Luckily Karen, with her years of experience in teaching children, including children with special needs, had developed a great deal of knowledge and was able to help me understand and come to terms with Katie’s diagnosis. Karen’s confidence in Katie and the dedication she has to help her achieve each of her milestones have helped me to allay the concerns I had about Katie and her future. This has allowed me to see and enjoy Katie for what she is, a beautiful blue-eyed little girl whose smile lights up the room when I come in to see her.

Every day I am inspired by the relationship our son Jack has with Katie. She might be crying, tears streaming down her face, perhaps because breakfast was delayed or one of the toys she was swinging about just suddenly flew out of reach. Jack will go up to her and immediately calm her down and have her giggling. I realize Jack would be this way with any sibling with or without a disability, but I cannot help but believe that he will be a much stronger person, thanks to his relationship with baby Kee Kee, as he used to call her.

Katie has changed our world greatly for the better since she came into our lives ten months ago, and we would not change a thing about her or our journey thus far. She is one of the three people I look forward to seeing when I come home at night (four if you include the dog), and I have no doubt that Katie will achieve great things in her lifetime. When she does, I intend to be there to support her. You won’t have to look too hard to find me, as I will be the one standing out front saying, “That’s my girl!”
By Brian Briggs

WE HAVE ALL LEARNED FROM HER AND BEEN AMAZED BY HER ZEST FOR LIFE!
It was a moment for celebration for my wife and me. We could not hear Bethany singing at the 8th grade Choral Concert. You see at the 7th grade Choral Concert a year ago we could plainly hear her in the group of 50 or so 7th graders. She was generally a word behind and very “off-key”. Everyone including the other 7th graders were patient with Bethany and smiled but it was clear she was behind the other singers. That is what made this year’s concert special—Bethany was singing with everyone else. We took joy in not being able to pick her singing out among the group this year.

Bethany Janelle Bullard is now 14 years old and has taught “old dad” and our family so much over the years. We have learned that many times our schedules and appointments are not nearly as important as we think. Bethany truly lives by the philosophy of “stop and smell the roses.” She can find more interesting things to look at, discover, read and absorb while passing through a room than most of us find in an entire day. She has also taught us that it is fun to spell every sign, advertisement and storefront you pass by. Her reading has grown by leaps and bounds over the past few years, and she has astonished us with her desire to write lists of words that begin with “B” and words that begin with “D,” etc. She also has a three page Christmas list that she has written on her own. Any movie, book or toy we encounter is eligible to be added to the list.

Bethany loves to play games on the computer—a teacher once told us that her “mouse skills” were at grade level. She also loves to read books and watch movies. She has convinced us that most things in life can be related to something that occurred in a Disney animated movie. We have taken Bethany to Disney World twice now, including this last summer. Bethany loves Disney World and knows every character and ride by heart and tends to pick a particular ride that she wants to ride repeatedly. Dad can now recite every line from The Many Adventures of Winnie the Pooh ride as he got to ride it four times last June. Proving she is a teenager, she also rode the Tower of Terror and the Aerosmith Rock ‘n Roller Coaster and loved them both!

Bethany is active in dance, swimming and Special Olympics participating in bowling, basketball and track. She is always proud of the medals she wins and frequently wears a new medal to church to “show off.” Bethany also loves going to the lake where she knows no fear of the water. We have to make sure she has a life jacket on before we go anywhere near the dock. She will jump in the lake, she is learning to swim but we still have to insist on the life jacket for now. She loves to sit in the bow of the boat and instruct dad to go faster. All-in-all Bethany has brought many rich adventures and opportunities to our family, we have all learned from her and been amazed by her zest for life! She tells us she plans to travel to London and Paris when she is all grown up, she may very well do that!
By Kevin Bullard

WE FEEL UTTERLY UNDESERVING AND THANK GOD DAILY FOR OUR ELLIE
“Life is a puzzle that is worth living, piecing together, seeing the beauty of togetherness the Creator has always intended.”

I wrote that poem for my wife this past Christmas, and gave it to her in a puzzle-shaped frame. It hangs proudly in our home right next to a collage of pictures of our four children, fittingly in the same style frame.

Elianna Grace (Ellie) joined our family of three boys on May 28, 2004. About an hour after delivery, we were initiated into the family of Down syndrome. It was like God said, “not so fast Kueckers, I have a plan for you.” Our direction in life took a dramatic turn; we felt overwhelmed with emotion, frustration and disappointment.

Ellie’s pediatrician, however, was all smiles when he told us we were perfect for Ellie. He said he could not think of a better advocate for any child. And when I told him that I would never place a top wrung on my daughter’s ladder, he knew that we were going to be just perfect for Down syndrome too.

I was extremely discouraged to have my daughter go through open-heart surgery. I was neither the father nor the supportive husband that I wanted to be. You see, my father has had four open-heart surgeries dating back to 1971. (In fact, his last valve replacement was on the date we found out we were expecting Ellie.) Subsequently, my childhood experience with my father, and my perceived experience with my daughter was almost too much to bear. I was out in “left field” and was not in control. I was not relying on others or God for support. Ellie’s AV Canal repair went perfectly; she was a textbook case for doctors and surgeons—in and out in five days!

Ellie is the puzzle piece we didn’t know we were missing. She is the piece that holds the other pieces together. We had no idea what joy we would feel, what amazing love God would show us. We feel utterly undeserving and thank God daily for our Ellie. She has had the same affect on everyone that knows her. It is truly amazing.

I am sure that many of you feel the same way as I do. So, now I encourage you to do what I do. Live life, encourage others to look up, have faith and trust God’s plan for their lives. Let me remind you to live your puzzle with joy, because the Creator can see the beauty of the entire puzzle as it is meant to be. Trust Him!
By Mark Keucker

I KNOW I COULD NOT BE MORE PROUD
The moment the doctor pulled him from my wife’s body, I sensed that we had a baby with Down syndrome. I knew in that instant that our lives had been changed forever. Oh sure, when our other two boys were born, our lives were changed as well… “This was a whole new ballgame,” I thought to myself. I chose not to tell my wife, Dana, what my guess was. I thought that giving birth was enough stress for that moment. We both had known that there was a very slight chance that we could have a baby with Down syndrome, but a level 2 sonogram showed that everything looked good and measured up fine.

A thousand things raced through my mind as I told Dana how beautiful he was, while watching the nurses take him over to be cleaned off and wrapped up. And he was beautiful… very full of energy and complaining at the top of his lungs about all the bright lights and commotion in the delivery room. My wife and the doctor were chatting away as he sewed her up and I watched as they inked up our baby’s feet for the footprint portion of the post delivery, happily snapping photos and shooting home video. We were off on a very new adventure… and I was in love.

Only months earlier, my wife and I were saying how we didn’t think we could handle having a child with Down syndrome. We weren’t the right kind of parents; it would be to stressful, etc. Boy, were we wrong. Not only did we handle it, we embraced it head on. You get over the shock and you learn. You learn about things that will scare you…and make you happy…and make you cry…and make you happy again and again and again. We couldn’t be happier.

But I imagine that there are many people in the world that can not handle it. And I hope and pray that a child with Down syndrome is never given to them. I believe that we were all chosen for this job. These kids need a little extra help and we were the ones picked to carry that out. If you have a child with Down syndrome, then you know you will handle it. You, too, have been chosen. It’s automatic. You have been selected to parent an elite group of kids that beam love into every corner of a room that they stroll into.

Keaton has two older brothers. Ian (11) and Fletcher (5). Talk about plenty of stimulation! It’s wonderful to watch them all play together. Keaton turned 3 in October and is such a joy to have around. I could not imagine life without him in our family. To us, he’s just our third son. I don’t even think about it. Like I said…it’s automatic.

As a father, I want Keaton to be accepted in every circle of life that he encounters… from the small tasks in life to a possible college education. I want that for all my boys. I know that for Keaton, some circles will be bigger than others. But there are big circles for all of us. Our kids just need a little help getting the circle drawn. I believe in my heart that children with Down syndrome make a positive difference in our families lives as well as complete strangers lives… and we should all be proud of every little thing that they learn and do. Praise them and you’ll get back more love than you ever imagined. I know that I could not be more proud.
By Brian Turner

I AM THANKFUL THAT HE’S A PART OF OUR FAMILY
I just returned from the beach at Torii Station, an Army Base on Okinawa, Japan. I am stationed here on Okinawa, in the Marine Corps, and we have lived here for close to two years. Today, our family had a super time playing at the beach for over three hours. The sun, waves and wind all made for great conditions. What I will remember most about our time is that I had the most fun with my two boys, Winton (7), and Tristan (5). We had a blast swimming, splashing and just floating around. Winton rode around on his float like a boogie board, and Tristan sat in his favorite seal and I pulled him around. Tristan is our son with Down syndrome.

Tristan was born in Portland, OR in March, 2000, and the day he was born I’ll always remember as a very painful day. We were surprised at his condition at birth. It hit hard. [I’ve always maintained that] nobody asks for a child with Down syndrome. I, of course, now know of several couples who have adopted children with this condition (to include, I believe, Albert Pujols and his bride). Nonetheless, my memories of our hospital room are of tears, hugs from my dad, friends from our Bible study praying for us and just trying to get through each day realizing what this little guy would mean to us and our life.

The process of simply accepting Tristan as our son has been amazing. There’s too much to this story to share now (like the incredible therapists from the Portland, OR and Vancouver, WA area who especially helped both my wife and Tristan), but one of the most encouraging books that I read shortly after Tristan’s birth was Another Season, by Gene Stallings. What struck me most from his book was this thought: “Wow….here’s a family raising a boy with Down syndrome in the 60s and 70s when services were not nearly as available and the stigma of Down syndrome was much greater”… we can do this. Stallings opens his book with a quote from Helen Keller that is so poignant, “It’s not enough to give your child a life; you have to give him a life worth living” (my loose paraphrase). Well, it took time, but I got to the point where I could honestly say that Tristan is the way God designed him, and that Tristan is not a mistake, and further, that I am thankful that he’s a part of our family.

Today, Tristan’s in a DoDDs school here on Okinawa where he receives OT, PT, ST regularly, and has an angel of a teacher who treats him as one of her own. He rides the bus to school. He jumps on the trampoline. He runs. He “reads.” He laughs. He plays with his brother and his two-year old sister. He’s learning to dress himself and go potty. Most of all, he smiles, and he smiles a lot. And for that, I’m grateful. I’m grateful to God for the son he’s given our family in Tristan. Now, I’d be a fool to not mention that my wife’s an amazing woman, and has borne the brunt of his primary care and is to be highly praised. She has practically earned a PhD in “Raising a Child with Down syndrome,” but that’s a whole ‘nuther story. There is certainly a lot more ahead in this story of raising Tristan, but one thing I know for sure, we’re going to give him a life worth living.
By Lieutenant Colonel Matt Travis, USMC Okinawa, Japan

IF WE ALL HAD JUST A BIT OF WHAT THESE KIDS HAVE IN THEM THE WORLD WOULD BE A BETTER PLACE
“Can I handle this?” “Will he die?” “Will he be mentally retarded?” “Can I handle this?” “Should we put him up for adoption?” “Will he have friends?” “Will he have a meaningful life?” “Can I handle this…?”

Every one of these thoughts—and more—went through my mind when the doctor told us that our newborn son, Michael, may have Down syndrome. Tracie and I had three other typical children and we had no indication that our little Michael would be any different. We had the usual tests during pregnancy. All tests came back “normal.” As I look back on the early morning of Michael’s birth, I couldn’t agree more: normal. He’s normal! It’s almost as if I don’t see the Down syndrome at all now. Amazing. I can handle this.

My dad, who passed away only two months after Michael was born, was the first person in our immediate family to call Michael “our little angel”. It was as if Dad saw the glimpse of the Divine, the holy, the pure and the innocence Michael would provide us each day. He was right. Michael will be four years old this September and has his opinions and can express them. He can be stubborn and he can be ornery. But at the core of this little person is this element that I can only describe as my dad did—divine. I’m sure you’ve all seen it. It’s the unconditional openness and love they show. It’s the random acts of kindness and the “pay it forward” attitudes they practice. It’s the unannounced hugs and kisses to parents, siblings, relatives and sometimes strangers. It’s the fact that they don’t have the venom, judgments or prejudices we typical people have. Michael even bows his head to pray and no one to my knowledge “taught” him this—he just does it. It’s simply divine. And I love being around it. I can handle this.

When I think of where I was mentally after Michael’s birth and where I am now I often wonder how I got here. At six months of age, he had open-heart surgery. How did I arrive at such peace and contentment with regards to being a parent of a child with Down syndrome? My dad’s words ring in my ears and it becomes clear. My little angel got me here. This little person who is nothing short of a gift of God and a symbol of the Divine in my life got me here. All of my kids show me a version of the divine – not just Michael. But it’s interesting to me, for example, that of all four kids in our family, Michael is the only one who consistently uses his “magic words”… you know, “please”, “thank you”, “excuse me” when he burps, and “bless you” when we sneeze or cough! Our typical kids have to be reminded to use these common, simple manners yet they flow naturally from Michael. It’s as if he enjoys using them and there is something subtly and simply profound about that to me. I can handle this.

Then there are the ways in which he draws our entire family together. Whenever we gather, Michael is the focal point. Obviously it has a lot to do with his age—the youngest member of the family seems to draw the most attention especially when they are infants and toddlers. But there’s something more to it than age. These little angels draw us in and captivate us with their wit, sensitivity, charm and personalities. Even the young typical kids pick up on it and swarm around Michael. They all want to dote on him, hold him, play with him and when they make him laugh, it’s as if they’ve won the lottery. His laugh is contagious and hearty. I can handle this.

I believe it’s the Divine calling us and holding us captive with these kids. I believe that we all want—desperately so—to have a bit of what they have in them: the Divine. Think about it. If we all had just a bit of what these kids have in them the world would be a better place. So why not believe that our kids can show us the pathway to heaven, or how to be continually polite, or to take joy in the simple things in life, or how to laugh at ourselves? Why not consider that we are not dealing with defects—we’re dealing with the divine and something that is pure and innocent, holy and perfect in its own way?

I go scuba diving in some of the most beautiful spots on earth. Every dive makes me think, “How could all of this life be an accident?” My conclusion is, of course, that life is not an accident. There is just too much below the surface to prove to me that a big bang landed us in just the right spot for all of this to happen. There is a reason behind it. The same is true for these kids. There is too much below the surface to convince me that there lives aren’t divine and through them we encounter a glimpse of God. I can handle that!
By Doug Billings

I CAN’T HELP BUT BE HOPEFUL AND OPTIMISTIC
It’s hard to believe Gabrielle (Gabby) is already a year old. Our third child’s birth in January 2005 came with much fanfare. She arrived a few weeks early and I almost missed her birth as I was scheduled to go out of town on a business trip that was avoided only by my wife’s severe “gas” pains that ended up being surprise labor and emergency childbirth. With all of the excitement and surprise of the day of her birth, as tired as my wife and I were, the last thoughts entering our minds the evening after the delivery were of chromosomes and Down syndrome. All of that would change the next day.

As with all of our children, we declined to pre-screen Gabrielle for birth defects. During our consultation with the on-call doctor the day after her birth, the doctor informed us bluntly and out of the blue at the end of our consultation that “she might have Down syndrome” and left. Needless to say, both my wife and I were stunned. I went to see Gabrielle, hoping to find out more information, and to be frank, hoping to hear a different opinion. The nurse, who could not have been kinder, gently went over the symptoms of Down syndrome and showed me how they appeared on Gabby. I then had the difficult task of going back to my wife’s room and confirming the diagnosis. It was the single hardest thing I’ve ever had to do in my life. We held each other and reminded each other that God must have picked us for a reason. We vowed not to feel sorry for ourselves and that we would treat this as a blessing, and not a burden.

The days following Gabby’s birth allowed us to gain some perspective on our situation. Gabby had difficulty gaining weight and developed a staph infection that kept her in the NICU for two weeks. During her stay, we saw that many of the children sharing a room with Gabby had conditions more severe than Gabby, and not all of them ended up going home. Our experience in the NICU reminded us that we really did not have it so bad and that some parents have to deal with much more serious problems. We were also fortunate that Gabby did not have any serious health issues, such as heart or other problems.

After we came home, I suppose I reacted like most fathers who learn their child has Down syndrome. The hardest part was dealing with denial. I’d catch myself looking at Gabby and thinking that “she didn’t look like she has Downs.” The Down Syndrome Guild’s New Parents Breakfasts and our local chapter’s monthly meetings greatly assisted us in our adjustment, giving us vital outlets for our questions and concerns. We were constantly told how happy children with Down syndrome were. As the year went on, and Gabby began to grow, we began to notice what a happy child Gabby was becoming, just as was predicted. It seemed liked she smiled all the time, lighting up a room by her mere presence. We also noticed the effect she was having on our other children. My 3-year-old loves playing with her little sister, and our 9-year-old has turned into the most loving, caring sibling Gabby could hope for. (She recently wrote a book about having a sister with Down syndrome.) I couldn’t be prouder of how my family has responded.

Gabby turned one a few weeks ago. It has offered me the opportunity to reflect back upon this past year and reflect on this remarkable experience. There were certainly times where I stared at Gabby and worried about her life ahead. But as I look to the future, with early intervention programs, therapies and educational programs, I can’t help but be hopeful and optimistic. While I recognize that the road may get bumpy ahead, so much has improved in the way the world addresses Downs syndrome in the past 20 years that I can’t help but think of what the world will be like in another 20 years. The world of Down syndrome is one I never planned on entering in January 2005 but, like I said, what a difference a year makes!
By Mike Yost

ONCE I STOPPED FOCUSING ON THE FACT YOU HAD DOWN SYNDROME AND BEGAN FOCUSING ON THE BLESSING FROM GOD OF BEING A FATHER FOR THE SECOND TIME, MY EXCITEMENT RETURNED AND HAS NOT ABATED
It was the summer/fall 2001 and after 2+ years of trying to adopt, your mother and I decided to bring another life into this world. That would be you, Caleb. Oh the joy we felt at hearing that we were expecting. There was this ever present excitement anytime we discussed you with family, friends and even strangers. Anyone will talk to expecting parents and everything is always positive.

After only knowing about the pregnancy for a couple of months, I was hit, yes hit, with some “strange news.” Due to some elevated numbers, I can’t recall what they were; we were told that you may be born with Down syndrome. However, for more certainty the doctor wanted to do an “Amnio.” I was pretty indifferent to the Amnio, you see I told myself it didn’t matter. As I look back at that period of time, I realize that I (not your mother) was just plain scared to find out. Well we did find out. You would have Down syndrome.

The normal, at least what I think is normal, aura that surrounds a family eagerly anticipating the birth of a child, was absent once people found out that we would be giving birth to a child with DS. The joy of discussing your birth was gone. It seemed like all, I’m sure it wasn’t, but it seemed like all discussions eventually centered on how difficult your life, our life, just life would be because you had Down syndrome and would have “special needs.” I had so many emotions, but the one that troubled me most was the feeling that “God was punishing me.” Because it seemed that so few conversations ever were about “how wonderful, how good, life would be with you.” Rather all conversations seemed gloomy.

I recall praying that perhaps these “man made tests were wrong and you didn’t have Down syndrome.” Or better yet, praying that God “would make you not have Down syndrome.” But the more your mother talked to me about how wonderful you would be, just being you, I stopped being afraid of your “special needs.” As my fear diminished, I was able to pray a different prayer. I remember praying to God for his guidance in helping me be the best father I could be for you. In other words I asked our Father to work on me.

I stopped asking him to change you. How unbelievably arrogant and foolish. You are made in God’s image, as are all children. And you are perfect just the way you are. I realized that I was asking him to change you for me. It was me that needed the change. Not you.

Once I stopped focusing on the fact that you had Down syndrome and began focusing on the blessing from God of being a father for the second time, my excitement returned and has not abated. By the Grace of God, I have become your father. Oh what a blessing!!!

So if I can give any advice to parents (whether present or future): every new life will bring unique challenges and joys that should be accepted for what they are, blessings from God. It’s been three years since you were born, all of our lives have been better from being a part of yours.
By Brian Welch

I WAS THANKFUL FOR THE DSG AND THE OTHER PARENTS THAT HELPED US LEARN SO MUCH
My son Dakota just turned 2 in March. It has been two years of change, as with the birth of any child. With Dakota having Down syndrome, the first year was all about the Down syndrome. I thought it was just me, being a recovering analytic, but Janie at IDC explained most parents go through this. The first year I spoke with everyone I could on the topic, learning as much as I could.

I was thankful for the DSG and the other parents that helped us learn so much. Nothing on earth we do is truly perfect but helping someone new is perfect timing, thank you all. Out of the blue I stumbled onto something, an old tape of Zig Zigler. He talked about meeting a person in Kansas City whose son had been told by 30+ doctors their son would never walk or talk. But one doctor believed he could, if they just believed, working toward goals and celebrating their son's life.

So Sherri and I started having a birthday cake at the Johnson County FRIENDS meeting each month to celebrate all the children's lives and their siblings. My family celebrated Dakota's first steps with cheering, and we were rewarded by his smile that seemed to say, “thank you for believing in me.” And thanks to all of you, many without qualifying children, that helped us and believed, thank you. I look forward to the future!
By Girard Sagmiller

WITH EACH SMILE, LAUGH AND NEW MILESTONE MY HEART GROWS A LITTLE BIT MORE—AND I SWELL WITH PRIDE
When my wife, Tanya, and I sat in the delivery room as a nurse told us that our son, Isaac, might have Down syndrome, we began the emotional journey that every parent of a child with Down syndrome has taken. However, the points from which we began this journey were so completely different that it dramatically affected how we perceived Isaac in the first few weeks of his life.

To say that I knew nothing about Down syndrome at the time of Isaac’s birth would be an understatement. In fact, I knew worse than nothing because the only information in my head was every myth, inaccurate assumption and misconception ever espoused about Down syndrome. In that first 24 hours of Isaac’s life, I asked questions so ridiculous that I am still embarrassed to even repeat them now. As a result of starting my journey from this abyss of knowledge, Isaac’s diagnosis hit me like a ton of bricks and it was several weeks before I was able just think of him in terms of being our wonderful baby boy—with a future of science experiments, soccer practices and matchbox cars—and look past his having Down syndrome.

By contrast, Tanya was at the absolute other end of the knowledge spectrum when it came to understanding Down syndrome. In middle school, she had done a project about Down syndrome, which led to her receiving a grant in high school to produce a documentary for a professor at UMKC. During the summers while in college and law school, she chose to work as a job coach for young adults, including several with Down syndrome. As a result of starting her journey with Isaac from the point of knowledge and awareness, Tanya was able to almost immediately look past Isaac’s diagnosis and just focus on him—with his fuzzy hair and big blue eyes.

During those first few weeks of Isaac’s life, while still mired in ignorance, all I did was fret, worry, feel sorry for myself and think that Tanya must be in a horrible state of denial because she was not doing the same. As a result, I missed fully enjoying some of the greatest moments of being a new parent, while Tanya was cherishing every second.

Fortunately, I had someone to lead me out of my ignorance and misconceptions, which eventually allowed me to focus on Isaac and the wonderful possibilities for his life. However, I realize that many new parents beginning the emotional journey of receiving a Down syndrome diagnosis might both be starting from the point that I did. To these parents, I encourage you to take advantage of the wonderful resources that DSG has to offer. There is a lot to worry about with raising any child, let alone a child who has received a diagnosis about which you know nothing, but the sooner you can free yourself of the misinformation and misunderstanding that is causing undue fear and anxiety, the easier it will be to enjoy the wonderful moments of being a parent.

I can now honestly say that our five months of life with Isaac have been the best in my 29 years. I cannot imagine life without my little man and know that with each smile, laugh and new milestone my heart grows a little bit more—and I swell with pride and not fear or anxiety.
By Thurston Cromwell

I FULLY EXPECT GRACE TO ATTEND GRADE SCHOOL, HIGH SCHOOL AND POSSIBLY COLLEGE—IF I CAN AFFORD IT!
My wife, Anne, and I recently attended a new parent meeting in Kansas City. I wanted to gather information on what we can do in Topeka to support new parents of children with Down syndrome. I came away with more than expected, much of it from the other new parents who attended the meeting. It gave us all an opportunity to talk about our experiences. I was amazed at how very much we all have in common.

Our daughter, Grace, was born in December of 2001. She was born with Down syndrome and a small hole in her heart that fortunately closed on its own. We have three other children; our oldest is now age 17. The news of expecting a child 15 years after our firstborn was quite a happy surprise. But it was not for us. In fact, we frequently found ourselves in the position of having to cheer up hospital workers as well as guests that had such a sad look on their faces when we told them about Grace. As teenagers, both Anne and I volunteered with children with disabilities. Yes, we have known each other a really long time. We both had known these children for who they were; their diagnosis really didn’t matter to us.

I noticed among several of us a sense of purpose behind the birth of our children. For some, it was an answer to their prayers. For others, it made us become advocates. Several parents have become very active in the Down Syndrome Guild. I have become a board member for our county’s service provider for individuals with a developmental disability. Anne is an NICU nurse and has provided one on one support to parents of newborns with Down syndrome.

We all have a tremendous amount of love and pride for our kids. I sensed that we all have high expectations for our children. I fully expect Grace to attend grade school, high school and possibly college—if I can afford it!

Initially, my greatest fear for Grace was that she will be judged based on her disability. Although Grace is her own person, I think about how much she has in common with my other children and all children. How compassionate she is, how she has a great sense of humor, how she gives great hugs, how she loves to be the center of attention, and how she rips into a box of lemon Girl Scout Cookies to separate the cookie and start with the cream filling.

I recently completed a presentation on behalf of our service provider to our local United Way. My message to them was that our children can and will do anything they choose to do. They just need a little more time and a little more help. I guarantee that they will reach their goals. The sky is the limit for our kids.
By Richard Martinez

I BELIEVE ONE OF THE REASONS WE SAVORED EVERY DAY WAS IN PART BECAUSE OF OUR SPECIAL NEEDS CHILDREN
Life for a family of children with special needs is exhilarating, to say the least. They can challenge and stretch you physically, emotionally and spiritually more than you ever imagined. Many times, Melissa and I felt like “Gumby”—stretched and contorted beyond what we thought we could bear. In fact, neither of us, by ourselves, was capable. It took commitment to God, a deeper faith every day and commitment to each other.

Our family had two “typical” children: Makenah (8) and Nicholas (3) and two special-needs children: Zachary (5) diagnosed with Down Syndrome and Alenah (adopted, age 1) diagnosed with a Pulmonary Stenosis, a heart valve condition that listed her as a waiting child at the Chinese orphanage. I’ve not seen someone work as hard as Melissa to provide the best life of potential for a son as she did for Zachary. She was his best advocate and was relentless in seeing that Zachary developed and did everything possible.

On August 30, 2003, my life changed forever. Our family was caught in a flash flood in Kansas. A 6-foot Wall of Water washed us off I-35 down the embankment. As I kicked out the driver’s window to try and save our family, I was flushed out of the van (along with Melissa and Makenah) by this “waterfall” we were in. After drowning for ~½ mile underwater, someho