21 Stories for WDSD- Defeating the Odds

Defeating the Odds

Just like any new parent with a baby the first year has its ups and downs. Full of nervous gitters, trying to make sure everything is perfect. Well for a parent of a child with Down syndrome, I have learned to let go.

Our journey of raising a child with Down syndrome began at 19 weeks gestation. My doctor had requested I take a panoramic blood screening which would identify the sex of the baby as well as any genetic concerns. Since our family had 2 other pregnancies with no complications I obliged without hesitation. Until less than a week after taking the test the office called letting me know the results were in and that I would be contacted by a genetics counselor… “Genetics Counselor!” The nurse had said many more words detailing my results but all I heard repeatedly was “Genetics Counselor!” I began to panic and searching google about all the possibilities genetic counseling could mean.

I then proceeded to make the call to schedule the counseling session. I remember the counselor asking several family history questions such were there any history of illness etc. Nothing had been found on my maternal/paternal side or my husband’s maternal/paternal side to our knowledge. With tear filled eyes I continued with the session. My husband was on the line since he was on the road for work. We both didn’t understand what was going on. Then the results were read, we were having a son and he showed 99.9% chance of having Trisomy 21 (Down syndrome). The counselor provided us with resources and assured us that we were not alone. I surely felt alone in that moment wondering how life would be with a special needs child and what people would think. I felt guilty of course blaming myself since we didn’t know we were pregnant until 11 weeks.

I reached out to friends and family but most of all I leaned on my faith. Praying hard with my prayer warriors and church family to lead me and guide me along the way. Until we were sent to have our ultrasound to confirm his diagnosis. I had researched key factors in a child with Down syndrome while in utero such as absent nasal bone, extra fluid behind the neck, and sometimes shorter extremities. I was prepared to look at the ultrasound searching for anything.  My God-Mom and good friend whom I call my Soul Sister, accompanied me in the ultrasound. Our sonographer, Amanda began our ultrasound as my soul sister held my hand. The sonographer answered my questions as I knew what to look for but as the ultrasound went on she did at times become quiet. We ended our session before the doctor’s review with a prayer. I had never been so moved by a complete stranger’s prayers.

My God-mom and I walked into the doctor’s office to hear the results of the ultrasound which showed that our son would also be born with a heart defect. I didn’t know if I could handle anymore news. Heart defect and the possibilities of a still born child. At that moment I checked out of the room, quickly wrapped my arms around my belly and prayed and prayed. The doctor had to ask the dreaded question… “Before we continue, would you like to continue or terminate this pregnancy?” Without a second thought I uttered the words, “We were chosen for this baby, I am keeping him.” The doctor then informed me that all of my future appointments would need to be transferred to Nemours and that I would need to go to a high risk doctor at Christiana Care.

I was ready to take on the journey. Down syndrome is a journey that I never would have imagined but I am thankful for my pilot. I never thought I’d be so comfortable allowing complete strangers into my home for the therapy sessions; PT, OT, ST and ECE. The strangers later became family as we all watched and witnessed Isaiah learn a new task even after surgery to repair his heart defect. As a parent of a child with Down syndrome, he has taught me to enjoy the moment as it comes. Thinking that you don’t measure up to what everyone else is doing leaves you feeling incomplete and incapable. I learned that being different is what makes the world a better place and not focus so much on the milestones of society but on the individual goals we make ourselves. Isaiah is defeating the odds that were against him to even make it out of my womb and we are now approaching the first year. What a celebration it will be!! We’ve come this far by faith!

About the Author: Latoya, lives in Kent County with her husband, Jean, and their 3 children Jayla 9, Jordyn 5, and Isaiah soon to be 1 in March.  She’s currently at SAHM with an accounting background. She’s an only child and a selfless friend. She’s an advocate for CHD Awareness volunteering as the Welcome Coordinator for Mended Little Hearts of Delaware. Latoya will be providing peer to peer support for families with a child dealing with Congenital heart disease or defects.

21 Stories for WDSD- Stuart

I learned that I was expecting our second child in 2008.  Although I was ecstatic to learn the news, my experiences after that left me with mixed emotions. During one of my early prenatal visits, the doctor could not hear a heartbeat.  Although he tried to reassure me by telling me that we would likely hear it during my return visit in two weeks, the waiting was agony.  Thank God they eventually heard the baby’s heart beat.  Things were normal for a couple of weeks.

I returned to my doctor’s office for another prenatal visit, only to find out that my routine blood work revealed a result that was associated with a less than 1% chance that my baby might be born with Down syndrome. I never really had to make this kind of decision, but I knew that I worked best when I had all of the facts.  When the doctors asked me whether I wanted to undergo further tests to confirm whether the baby had Down syndrome I immediately said yes.

I probably should have been nervous when I arrived for the amniocentesis, but I felt at peace.  After about 40 minutes, and what seemed like an endless amount of attempts to obtain enough of a specimen to conduct the test, the waiting was finally over.  I now knew that my baby boy would be born with Down syndrome.

I have to say that I was overwhelmed with thoughts about what this news meant for our family.  I knew that I was going to bring a child into the world and that God does not make mistakes. I thought that people would respect our decision, but I was wrong.

I wanted to be happy.  I wanted to plan for the best.  I wanted to have support from my friends, family, and physicians.  Instead, I received so much negative feedback about our decision.  Health care providers bombarded me with all of the worst case scenarios, telling me things like “Your child will not walk until age 4 or 5” “ Your child will not be able to learn” “Your child will not be able to eat without significant difficulties”.  I wondered why more people didn’t simply say “Congratulations”  “We are praying for you” “We support your decision” or simply “How can we help”?

Despite the negative words and attitudes that surrounded me, I decided to stay positive.  I faithfully went to my prenatal appointments every two weeks and followed the doctor’s instructions. During one of those visits, I received a wonderful gift.  I saw my baby’s perfect face.  I immediately fell in love with his chubby cheeks, his pudgy nose, and his little fingers and toes. After that day, nothing anyone said could deter me. I loved this baby and I was committed to helping him have a wonderfully fulfilled life.  It didn’t matter what people had to say at that point.  I was keeping my baby.

Fighting through the negative sentiments and naysayers was the best choice I could have ever made. After Stuart’s birth, I connected with Child Find and arranged for services to be provided in our home.  Contrary to what I was told, Stuart walked at 14 months old,   ate everything he was given without any problems, and went to preschool and learned many things alongside other children.

I am not suggesting that all of this was easy.  It wasn’t.  As Stuart entered elementary school, we faced new challenges.  Teachers appeared to be unwilling to creatively meet Stuart’s unique learning needs.  In fact, some members of the educational team made us feel like they did not want to educate Stuart.  These new challenges did not deter me.  I remembered the commitment I made the day I first saw this wonderful child’s face and I did not give up.  Neither did he.

I learned more about special education and the IEP process.  Based upon the knowledge I obtained, I moved Stuart to a learning environment that worked for him.  Today, Stuart is 9 years old and attending third grade.  Most important, Stuart is thriving and learning.  He is eager to go to school and his education team embraces his unique strengths and abilities.

Stuart is one fantastic guy. He keeps me laughing and learning.  If I am having a bad day, Stuart says or does something that instantly brings a smile to my face.  He is truly my blessing from God.

Stuart enjoys reading books, watching movies, and playing video games.  He also loves to play baseball, roller-skate, box, and swim.  Stuart is also a big fan of his brother on the basketball court.  No one cheers for his brother louder and with more enthusiasm than Stuart.

Stuart is a huge part of our family and we love him more and more each day.  He has a smile that will light up a room and a personality as big as the sun.

About the Author: Shelvia lives in Newark with her two sons, Solomon and Stuart. She is board member for the Down Syndrome Association of Delaware. She is often seen leading DSA of DE social events, like the egg hunt and Valentine’s dance.

21 Stories for WDSD- My Brother, Nate

My name is Sam. I have a brother who has Down syndrome. And the experience is interesting because everyone helps you figure it out and you feel grateful. There’s good and bad. The good is you meet other people who are different from you but are very nice. The bad is that people underestimate people with Down syndrome. That makes me feel mad because I want to show them that people with Down syndrome can do everything a regular person can do and even better.

My brother Nate is 3. He has Down syndrome and no one underestimates him because he is very intelligent like any other person.  I like my little brother because he always comes into my room when I’m going to sleep and he hugs me.  When Nate had cancer I felt special because I was the only one who could make my brother laugh when he wasn’t feeling well.  He smiles every time I walk in the room.  I’m not a hero. I want to make sure he smiles when he’s feeling down.  Having a little brother isn’t always fun because he gets in my stuff and breaks things. But my life is better with a little brother because I have someone to look up to.

About the Author: Sam Griffith is an energetic 10-year-old who lives in North Wilmington with his mother, father and little brother, Nate. A native Delawarean, Sam is a fourth-grader at The Tatnall School who enjoys football, baseball, basketball, soccer and video games. When Nate was undergoing chemotherapy treatment for leukemia between October 2015 and September 2016, Sam was Nate’s hero.  The boys enjoy a very close relationship.  When Nate was born, Sam told him that he will always have his back and “anybody who messes with you, messes with me.” Sam continues to stand by that motto, and he makes his parents and little brother very proud.

 

 

21 Stories for WDSD- Nathan

I became a mom to a child with Down syndrome through adoption. Nathan had lived in a Bulgarian orphanage since he was one day old.  In Eastern Europe, many children with Down syndrome live in orphanages because there is little support for families caring for children with special needs.  The roads that led us to Nathan’s orphanage were unpaved, the surrounding buildings stark and cold.  One would never know children were housed in this building because even inside it was eerily quiet. When my 11 year old daughter and I sat in the director’s office waiting to meet him, there had been no laughter or smiles.  There was only solemn conversation between staff and our guide in a language I didn’t know.  I was told the director didn’t understand why we would choose to adopt a child with Down syndrome.

A tiny elf of a boy, 4 ½ years old, was brought into the room.  He couldn’t walk independently, but when his hands were released he stood solemnly by himself. Wispy brown hair covered his eyes.  He made his way slowly around the room, stopping briefly to guide each person’s hands in gentle clapping movements.  When he stopped in front of me, my heart melted.  Someone prompted me to lift him up and follow with him. He felt weightless in my arms. Stoic and silent, he showed no resistance to me holding him. We were taken to a room with toys and left with only our guide and that tiny child. We played, clapped, and sang.  Tentative smiles turned into grins that reached clear across his face. Certain play made him giggle and we fell in love with him. At times he just leaned into us, soaking up all our love.

As required for this country’s adoption process, we visited him several times before returning home.   The remaining paperwork would take six long months to process. Leaving the orphanage for the last time, my daughter started crying. That sweet boy wiggled out of his nanny’s arms and with speed that surprised us all, crawled down the hall toward the girl to which he had become so attached. She held him and cried. I cried. I think every eye in that place spilled tears. They had to pull him away from my daughter.  We cried in the car all the way back to the hotel.

When I met my son, I gave little thought to him having Down syndrome. We fell in love with that boy and his diagnosis didn’t matter to us.  What he did or didn’t do compared to his peers didn’t matter.   Down syndrome didn’t define him then and it didn’t when we were reunited six months later. Today, Nathan is a 12 year old boy who likes to listen to music, go swimming, eat chicken nuggets, and tease his sisters. He is very attached to his family, best friend, his bus aide, and his teachers. He goes to respite nights and parties. Every summer he attends the Days of Summer Camp and other activities hosted by the Down Syndrome Association of Delaware. Though the volunteers and staff have changed over time, we are grateful several have been there to support and encourage Nathan and our family since he joined us.  Seven years ago, our family chose to adopt a child from a place where people with Down syndrome are housed in orphanages and institutions.  But now, Nathan is a cherished son, brother, grandson, student, and valued member of our community- and he just happens to have Down syndrome.

About the Author: Jennifer is a mom to a diverse crew, including one with Down syndrome and one with a traumatic brain injury and cerebral palsy. She appreciates beauty in nature, kindness in people, and a good yoga class.

21 Stories for WDSD- Familiarity with Down syndrome

My name is Courtney, and Matt and myself have two wonderful boys, Dylan and Lucas.  Dylan is almost 7 years old, and Lucas is almost 3 months old.  Lucas was diagnosed with Down syndrome when I was 13 weeks pregnant.

Our family is more alike than different.  We consist of two loving parents, two loving boys a dog and a snake(boy family!).  We go to parks, play outside, read bedtime stories and have milestones we set and reach.  Both of our boys cry, laugh, and snuggle.  The point is, we are more alike than different.

When we were at a routine prenatal check up, we were informed that our now 3 month old baby had a risk of having Down syndrome.  Our entire family was shocked, Matt’s older brother has Down syndrome, and it isn’t connected to us genetically.  We went ahead and got further testing done to be prepared.  Sure enough, our baby boy was officially diagnosed.  What did that mean to us? It meant that our rollercoaster of emotions were at an all time high. We were filled with fear of the unknown health risks, the unknown behaviors, the unknown path our baby will have to travel, but we still were filled with love, encouragement, and happiness, too. This was the beginning. Down syndrome is just a label it is not who our son, Lucas, is at all.  It is just as his blue eyes don’t define him, neither does this diagnosis.

Matt grew up with his brother and he said that having a brother with Down syndrome wasn’t any different than having any of his other siblings. They played, they argued and most of all, they loved one another.

As a family we have already learned to ask questions, reach out and accept that this journey is one which we have a lot of unknowns, but isn’t that true of any family with any child? Every child is different and has different needs. Diagnosis or not, we are more alike than different.

About the Author: Courtney is the mother of Dylan and Lucas. She and her husband, Matt, live in Selbyville, DE. They relocated from Baltimore in June.

 

 

 

21 Stories for WDSD- Down syndrome is like a fingerprint

Down syndrome is like a fingerprint

What do we know about fingerprints?
We know they are unique to each individual, and so it is with Down syndrome (Ds). We know that each person with Ds has an extra chromosome on their 21st pair, but what that means to each individual person is different. We know that having this extra chromosome can cause many things, but not the same thing for each person. We know it can lead to intellectual and physical challenges, but we cannot say that it effects each person in the same manner or at the same time. We at best can say, “An individual has Down syndrome,” just as we might look at a typical person on a plane next to us and wonder, “How did he get to be taller than me?”

This issue is our perception or point of view. Much of our lives are governed by our points of view, our observations, life experience, and this is the point I wish to convey to all of you today. “Don’t get trapped in your perception! It might just limit your view.”

Jason is my third child and he has Down syndrome. He is the baby of our family, but he surely is not a baby. We should not treat him that way (sometimes we forget this). Sometimes we assume if we speak louder Jason will hear us better, but Jason has no hearing issues.

What we sometimes forget is that more than anything else is that he is a teenager. If, for just a moment, we think back to our older children, we would realize they use to (and now that I think of it, still do) give us the “eye roll” that says, “I heard you just fine, I just have no plan to do it your way.”

I like to call it the perception trap. I learn every day that Jason understands more, and can do more then I might think. Whose fault is that? It surely is not his. I have also learned that I should not let myself fall into this trap or underestimate him, as it plays into Jason’s favor each and every time.

He knows exactly what he wants and acts decisively with purpose if it is something he plans or wants to do. If I am directing him to do something there always seems to be some hesitation as he is eyeing me up to see just how much I will do for him. Who really is at the disadvantage here?

I guess the thing I most wish to share during this month leading up to World Down Syndrome Day, is this: Just maybe we might be stuck on our own perception of what a person with Down syndrome can accomplish, or what they should be? Maybe it is not them that needs to conform to our thinking, but rather, maybe we as a people have to be more empathetic, compassionate, understanding, and respectful. Maybe we just might figure out that they know, contribute, and accomplish a lot more than we do, and that they’re smart enough and humble enough not to show their hand all of the time.

My advice, if I am at all qualified to give any, is this: Keep your eyes wide open. Learn to accept it is our perceptions that might not always be correct. Learn to watch without pre-judgment. In doing so, we might learn that every individual with that little extra on their 21st chromosome is probably a lot more than anyone might have expected. Always remember that each individual with Down syndrome has a fingerprint in life that is every bit as unique as every other persons’ in the world, and we should always be mindful of the great contributions they can and will make within our community and in our lives.

About the Author: Dave Gazzillo is the current President of the DSA of Delaware. Married to Jeanne, and the father of three, Jason being the youngest (Ds). Dave is a Senior Vice President of Statement Marketing operations at Bank of America. Through vision and leadership we hope to grow and mold a better more inclusive world one step at a time, so that all can participate and share.

21 Stories for WDSD- The Jastrebski Journey

March 7th- The Jastrebski Journey

When Lauren asked me to do a blog entry, I immediately thought of the article I did when Marc turned 18, and voted for the first time for President Obama.  But alas, I can’t find it, and so much has changed since then, maybe it’s for the best!

I remember vividly the births of all my children, but Marc was my first.  He was due on April Fools Day, 1989, and showed up on April 5.  Finding out his diagnosis, and his medical issues, was very hard.  I had some exposure to people with Down syndrome but not with heart issues, and honestly I cried so hard I wasn’t sure WHAT to feel.  And then I looked at that little face.

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21 Stories for WDSD- Boxing and Down syndrome

March 6th- Boxing and Down syndrome

Teaching anyone anything can be a challenging task. Whether you’re school teacher, a college professor, a baseball coach or, in my case, a boxing instructor, you’re constantly tested on your knowledge, proficiency, language and interpersonal skills on a daily basis.  Over time you hone your craft, adapting your teaching style to fit every individual that comes in with an open mind. Never, have I been tested like I have been when instructing our boxing program for individuals with Down syndrome….and I’m much better for it. When I look back at the teacher I was before and the teacher I am now, the difference is night and day.

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21 Stories for WDSD- How The Worst Day of My Life Became The Best Thing to Ever Happen To Me

March 5th- How The Worst Day of My Life Became The Best Thing to Ever Happen To Me

I will never forget that moment the doctor woke me from a nap to tell me my son has Down syndrome. It was not during my pregnancy, or at the hospital when he was born, or even at his follow up doctor appointment. In fact, it was only after he had been hospitalized for RSV, been diagnosed with congenital cataracts, and I had been told he had a heart defect that would require open-heart surgery to repair. It was not even until he was about three weeks old.

For an entire pregnancy and after being handed a perfectly healthy baby boy, I found out I was living a lie. I don’t think I have ever been so betrayed by life as this made me feel. I felt like I was standing in the room of life when suddenly I found myself flat on the floor, as if the very ground I was standing on had been snatched back from under me leaving me stunned, choking on the breath I was struggling to take.

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21 Stories for WDSD- Love Deeply

March 4th- Love Deeply

Ryan Callahan was born on April 1st 1986. On April 2nd, 1986, we learned that he had Down syndrome. For the next 31 years until his passing on January 20th, 2018 he was the light of our lives, but he had the most stubborn soul. He was our gentle giant who always had a ready smile and a wave. While Ryan had very limited verbal language, he managed to get his point across effectively….usually. As far as he was concerned he was communicating clearly, we all had a hearing problem. His sense of humor was all his own. Despite his disabilities, his ability to understand and use sarcasm was unparalleled. He could tease and aggravate with the best of them.

For the life of me, I could never figure out how he didn’t have the skills to take out the garbage, but could figure out how to open facebook on a smartphone and find pictures of himself and his friends. As any parent of a child with a disability I worried that he would be left out and have no friends.  I realize now that was a waste of good worrying. When Ryan was seven he started to play Little League Challenger T-Ball. Shortly after, he got involved with Special Olympics. Over the 25+ years that he was involved with Special Olympics he played unified T-Ball, did Soccer skills and Tennis skills transitioning on to Track, Volleyball, Basketball, Bowling in the winter and Summer Fun League, Powerlifting and Golf. He had a sport every season with some seasons overlapping. In the last few years he started to go the HAC Fitness Fridays working out every Friday at the Hockessin Athletic Center. Most recently he took up boxing which was offered by the Delaware Down Syndrome Association. He loved them all, but I think his favorites were Bowling and Boxing. Ryan had a habit of standing on the outside and waiting for someone to invite him to join in. I would get frustrated and we had many a talk after practice on the way home about how he needed to stop doing that. That was a one sided conversation as Ryan had his own plan.

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