Annual Dinner 2018

Last night we had a memorable evening at our Annual Dinner & Elections at the The Delaware Contemporary. Catering was provided by Sherm’s Catering. We were able to reflect on our accomplishments this past year and celebrate with dancing and good conversation.

We honored two board members wheos terms ended, Kimberly Finn (who is also our Buddy Walk Co-Chair) and Jim Kelly (who will remain with us as an at-large board member)

We are proud to announce two new board members: Tahita Muhammad and Susan Scott. https://www.dsadelaware.org/about-us/board-of-directors/

In addition, we presented awards to several outstanding community members who support our organization. Susan Scott, Jean Beck, Representative Melanie George-Smith and Milford Moose Lodge. Thank you for your dedication to the DSA of DE!

21 Stories for WDSD- Unconditional Love

Unconditional Love

Written by Ryan Pickett

Upon finding out that we were blessed with a daughter with Down syndrome we were told of the many things we should not expect of her.  Hopes and dreams seemed to come to a cruel halt before her life began, replaced with worry and fear.

What the experts forgot to tell us were the many wonderful things we would have, some gifts far greater than we could ever imagine.  If I knew then what I know now, those fears would have melted away, just as our perceived expectations had in the very beginning. 

I cannot speak for all parents of children of Down Syndrome, I was only blessed with one.  But I think back to those early fears and they seem so minute compared to the many gifts our daughter Kenzie has given us, none greater than the gift of Unconditional Love.  

Read More

21 Stories for WDSD- Clinic

I moved to Delaware in 2008, with a few stops between here and Jamaica, to start my career as a pediatric medical geneticist at Alfred I. duPont Hospital for Children.  I inherited the Down Syndrome Clinic from one of my new colleagues and one of my first duties was attending the annual Down Syndrome Association of Delaware Dinner to accept an advocacy award on behalf of the clinic team.  My husband and baby daughter accompanied me to the event and what first struck us was the warmth with which all these families welcomed not only me, but all of us.

Almost 10 years later, I have had the honor of helping to care for many children with Down Syndrome as our patient population has grown and I have said aloud many times, that this is when I feel like a real pediatrician.  I have been fortunate to work with a wonderful physician assistant, therapist, social workers and volunteers from the DSA of Delaware, who play an equal if not more important role than I do.

I have been asked many times if children with Down Syndrome need a geneticist to take care of them, and even though I humbly admit that they do not, it is something I hope will continue for my entire professional life because it has been so fulfilling.

About the Author: Dr. Nina Powell-Hamilton is the current Director of the Down Syndrome program at Alfred I. duPont Hospital for Children. Married to Andrew and mother to Gabby.  Nina is a board-certified pediatrician and medical geneticist. She is pictured above with our two self-advocates, Rachel and Elizabeth, that work with her within the clinic.

21 Stories for WDSD- That Extra Invisible Thing

That Extra Invisible Thing

When I was pregnant with our fourth daughter, Grace, we knew she had a serious heart defect. When Grace was born, all we cared about was the health of her heart and when we could have surgery to correct it. People told us she had “Trisomy 21” and “Down syndrome”, but we really were more concerned with her just staying alive. With God’s help and the skilled hands of surgeons at the Childrens’ Hospital of Philadelphia (CHOP) Grace’s heart defects were repaired and we started our journey with raising a child with Down syndrome.

Grace was about two when we attended a symposium at CHOP and first heard about co-occuring Down Syndrome and Autism (DS-ASD). We heard that this was very rare (about 5% of the total population would also have autism) and it was mostly boys who had this condition. We breathed a sigh of relief, and continued to enjoy our youngest daughter.

Grace was in a combined Kindergarten / first grade class when we had her triennial school evaluation completed. Her speech had stalled for the previous three years. This was despite the fact that we had a very experienced and caring speech therapist. Her Kindergarten teacher also said she suspected Grace had Autism. So – You can see a heart defect. You can see Down Syndrome. No denying any of these. But Autism? In a girl? This was super easy to deny! And we would surely get proof that she did not have Autism.

We played along with the school and had Grace evaluated by the Delaware Autism Program (DAP). We also got on the waiting list at Kennedy Krieger to see the expert in this field. We were amused … and confused… when DAP came to observe Grace at school. It was time to stop working on something and Grace showed the hand to her teacher and said, “Not now darling, I’m busy!” That was definitely a moment of brilliance which disqualified her from going into the DAP program – and affirmed our hopes. Then Dr. Capone gave her a diagnosis of PDD-NOS and we added Autism as an IEP classification – and kept doing what we had done before.

What do you do with an invisible diagnosis? I was too busy getting this Down syndrome thing down to become an expert at something else. Besides Grace just didn’t do a lot of things I read kids with Autism do – at least I wasn’t ready to admit any of it. So – we took Grace to be evaluated – again. At CHOP and AI DuPont Hospitals. They all confirmed the diagnosis.

It took us a long time to turn denial into action. When Grace was still not reading by third grade, we had an Independent Educational Evaluation and finally started to ask the school for meaningful changes in Grace’s IEP. It was not until 6th grade that we switched to an Autism support setting for Grace. The difference has been phenomenal. Grace went from being a complacent, prompt dependent girl to being vibrant, independent and sassy! She’s different than her peers with Down syndrome and different than her peers with Autism. She has elements of both and some things that are uniquely Grace.

Life didn’t stop when we acknowledged that Grace has co-occurring DS-ASD. Grace has a wonderful time at school and is included in academics as well as after school activities like the school musical. We’re active at home and in the community, and enjoy many sports and social events.

To parents who want to deny that invisible thing – DON’T. Embrace it just like you did the Down syndrome diagnosis. Do your best to get interventions and programs as early as you can. It makes a lot of difference. And be prepared to take the slower, s…l…o…w…e…r  road.

About the Author: Hazel Cole lives in Newark with her husband Robert, Grace, and daughter Lydia. Hazel retired from corporate life to work part-time as a Parent Consultant for parents of children with special needs. Robert was inspired by Grace to become an emergency nurse at Christiana Hospital.  Our whole family feels blessed and improved by having Grace in our lives.

21 Stories for WDSD- Special Friendships

Special Friendships

My son Ian is 35. He has been lucky to have a wonderful group of friends throughout his life. Friendships are so important for our children with Down syndrome and others with special needs. It might not seem necessary to work on those friendships while your children are young and involved in school and activities, but be sure to nurture them along the way.

Ian and Jonathan first met when Ian was 9 months old and Jonathan was 19 months old.   Ian followed Jonathan though school, they were in Special Olympics together, did acting at the Delaware Theater Company, attended dances, parties, and hung out. Through these activities the group of friends became larger and the boys had interest in Powerlifting and WWE . A local wrestling group ECWA came along and gave them a activity to get them out every 4-6 weeks. Without Jonathan’s father Hank,  organizing these outings this wouldn’t be possible.

Hank because the photographer for ECWA and was there at all the meets and so were the boys. ECWA moved their venue far away so the boys got to go to the Boys and Girls Club to see Right Coast Pro Wrestling. They sit in the front row yell, cheer and heckle the wrestlers! They are loved by everyone at RCP wrestling. They know exactly when the next match is! Ian waves his hand over his face saying “You can’t see me”- John Cena’s tag line. That’s how I know the next match is coming.

After the matches, the boys go to Buffalo Wild Wings and sometimes Hooters for one of the boys birthday for “Burgers and Beers”. Just what any typical guys their age would be doing. 

I am truly grateful my son has a network of guys he can call friends. It wouldn’t be possible without the parents of these awesome men. The group started out with Ian, Jonathan, Dominic and David. Later came Marc and Ryan. These are all wonderful guys with amazing families. We were the fist group of “mainstreamed” children. They had friends without special needs along the way.  Our boys lost touch with them when their friends went off to live their “normal” lives. I’m sure knowing our boys touched their lives in positive ways. Hopefully making the world a better place for our communities. My point is relationships our boys have as adults with Down syndrome or other special needs are important for their wellbeing and mental health so nurture those relationships so they have a group of meaningful friendships throughout their lives.

 

About the Author: Cathy Stiles-DeNest lives in Bear with her son, Ian. Cathy is a hair stylist by trade. 

21 Stories for WDSD- Lexi & Lila

I had a surprise pregnancy at the age of 40.  We got another surprise at 11 weeks gestation when we found out our baby had a 1 in 5 chance of having Down syndrome.

We walked into our OB’s office after receiving the news and she asked us when we wanted to scheduled the termination.   After telling her that we would not be terminating the pregnancy she tried to convince us that it would be “right” thing to do.  She went on to tell us that our baby would be a hardship on our family and a burden to society.  We walked out of her office and never went back.
Time went on and there were more complications.  We were assigned to a team of perinatologists for my high risk pregnancy.   At 16 weeks gestation we had an amnio and found out that our baby was a girl and the diagnosis of Down syndrome was confirmed.  We had already decided that if we were having a boy he would be named after my husband and his father, and if we were having a girl she would be named after my mother.  So “the baby” became Lila, and she began to grow even more in our hearts.
Lila had a lot going on!  She had a heart defect (VSD), an issue with her kidneys, IUGR, duodenal atresia, the list seemed to go on and on.    At around 27 weeks gestation, after being a VERY active baby, Lila stopped moving.  We made an appointment to have an ultrasound.   Our amazing doctor told us that we needed to prepare to say goodbye~ that there was nothing he could do and it was all in God’s hands.  He said if it was a healthy pregnancy that he would recommend an emergency c section but that wasn’t the best option for us.  He told us how sorry he was and hugged me as I cried.   My husband and I left his office, sat in the parking lot, and cried together.  We called our parents and told them what the doctor said.  I will never forget what my mom said in that parking lot.  She said, “The doctor is wrong.  She is going to live- I had a dream that I was changing her diaper at your house!”  That may seem weird to other people but when my mom says something like that,  we listen.  It gave us so much hope.
Two days later our little fighter started moving again. Fast forward through a bunch of appointments, a surgery consult, NICU tours, hospital triage visits and one hospital stay, Lila was born at 35 weeks gestation via emergency c-section.   She weighed in at 5 pounds, 5 ounces.  There was an entire team from the NICU in the room and they took her away immediately.
Lila had surgery within 24 hours of her birth to correct duodenal atresia.  Back into the NICU she went, and there she stayed until she was 7 1/2 weeks old.  The day we brought her home is a day I will never forget.
When Lila was 4 1/2 years old, she was diagnosed with hypoimmunoglobulinanemia/Common Variable Immune Deficiency.  She had been constantly sick for about 6 months and our pediatrician told us that it was common for kids with Down syndrome to be sick all the time.  That didn’t feel like an acceptable explanation so when Lila was diagnosed with yet another infection, this time a staph infection, we contacted an infectious disease specialty team and they agreed to see her.  They ran a lot of tests, then referred us to hematology/immunology.  Lila began receiving IVIG treatments right away.  (Always, always listen to your gut)
Shortly after Lila began receiving IVIG treatments, I saw a Facebook post that would change our lives forever.  A baby girl with Down syndrome needed a forever family.  I saw those posts quite frequently and since none of them applied to me (or so I thought at the time) I just kept scrolling.  A week later I was still thinking about that Facebook post.  That baby girl.  I called my husband and we decided it would be ok for me to call and ask some questions.  “I just want to make sure they found a family for her.”  That call turned into more calls and a couple of weeks later I was on the phone with the birth mother of that precious baby girl.  A few weeks after that, the birth parents and the baby visited our home.  .  A couple of weeks after that, we received the call that we had been chosen as the baby’s forever family.  12 days later, we brought that baby girl home and changed her name to Lexi.
There are many details missing from the story I just told.  Some things are just too private and too sacred to be shared publicly.   If we are ever in the same room, ask us about the story.  We both love telling the story of how Lexi joined our family, and how she was meant to be ours.
A couple of awesome details about our Lexi girl’s story:
Lexi was born on my son and daughter-in-law’s wedding day.  Not just on the same day, but during the time the ceremony was taking place.  Our family gained two new members that day, we just didn’t know about one of them until later.
Lila and Lexi seemed to bond immediately.  We are so incredibly thankful for that..  Lexi wasn’t too sure about the adults in the house but she sure liked Lila and the feeling was mutual.
Fast forward to March of 2018:  
Lila is 11 years old and in the 5th grade.  She now receives weekly Hzentra (subcutaneous) treatments for her immune deficiency.   Lila loves to read, sing, dance, listen to music and Facetime her big sister.  She loves animals and loves to learn everything she can about them.  When she grows up she wants to work at a veterinary hospital, zoo or aquarium.
Lexi is currently 7 years old and in the 1st grade.  Lexi is a healthy little girl who is full of life.  She never meets a stranger and loves to learn everything she can about everyone around her.  Lexi loves to write, color, dance and practice “flips” which nearly give her parents panic attacks.  When she grows up she wants to be a Super Hero.
Both girls love to pretend that they are contestants on The Voice Kids Australia and America’s Got Talent.  They take turns performing their acts and being the judges.  If one of them ever tells you that you are “the whole package”, you will know where that came from.   ; )
Lila and Lexi are best friends.  They fight like all siblings do but they love each other fiercely.  We are so incredibly grateful that they have each other.
About the Author:  Linda Nargi lives in Wilmington, DE with her husband Nick and their daughters, Lila and Lexi.  She also has grown children- her daughter Tiffani lives in Colorado.  Her son Justin lives in Virginia with his wife and daughter.  Linda is a stay at home mom who devotes her spare time to learning all that she can to passionately advocate for her daughters with Down syndrome and all individuals with disabilities.

21 Stories for WDSD- Grace

We are the proud parents of a loving, compassionate, friendly, social and funny 14 year old girl.  When Grace was born we did not know she would have Down syndrome.  We are lucky to have the Down Syndrome Association of Delaware be a part of our lives!  We have enjoyed attending family social events, parent education meetings, the Run for the Buds and the Buddy Walk.  We feel fortunate to have met such great advocates through the organization.  Talking with families who have traveled this road before us have been a great resource, so we thank you all!

Grace is currently a freshman in high school.  Her first year of high school is going well.  The journey through the education system has not always been easy though.  It is never easy to hear what your child is not capable of doing or that they are below grade level in core subjects.  The compliments we have received about Grace have always outweighed the negative which is fantastic!  Only this morning Grace and I met  with her guidance counselor to discuss what courses she would like to take next year.  I love that they asked her what her interests are and then explained what courses they thought she would enjoy.  Our goal for her high school years is for her to have the fullest high school career possible.  Since Grace loves sports we have made it possible that she has been a part of the high school volleyball team and the basketball team – which she played in 2 games and scored points!  She will participate in soccer in the spring too!

Grace is very active outside of school too.  She has been taking piano lessons for 8 years and loves music!  Her favorite band is One Direction.  She is a Girl Scout Senior and just earned her Cadette Silver Award which is the highest award for a Cadette to earn!  She also has been taking horse back riding lessons for 11 years.  She is a Speical Olympic Athlete where she participates in bowling, soccer, basketball and swimming.

It has always been important to us to have Grace involved in many activities.  Our hope is for her to have a positive impact on those she meets.  To show everyone that she is more alike than different.  A few weeks ago the high school had 1/2 days and I had to work.  So I had Grace come to the elementary school where I work.  The weather happened to be too cold for outside recess so we stayed in and when I went into the classroom with Grace all of the students came over and introduced themselves to her and immediately asked her to join them in their activities!  It warmed my heart to know that the youth of today do not pass judgement and are accepting and caring.

Grace has hopes and dreams just like everyone else.  In 7th grade she started to attend her IEP meetings.  Prior to the meeting she sat with the ED and went over a career guide and she had to answer questions about her future.  Her answer was and still is that she would like to work with horses or babies. She wants to go to college and to live independently.  She now has to work on life skills to get her dreams to come true (which is much easier said than done but we are working on it.)  One of her goals is to also marry one of the boys from One Direction or Like Evans!

So now we plan for her future.  Reminding her that having dreams is wonderful but that not all dreams can come true is the difficult part.  We hope that as many of her dreams come true as possible and we will do what we can to make that happen!

 

Bio:  Lisa Wisnewski is married to Joe and has one child, Grace.  She is  a part time paraprofessional in the Appoquinimink School District. Lisa is a past member of the Down Syndrome Association of Delaware Board of Directors where she served as secretary for 8 years, she has been an active member of the Buddy Walk Committee for 14 years and helps the DSA with volunteers for all of our events.

21 Stories for WDSD- Listening to Laura

Listening to Laura

When life doesn’t go as planned, which happens to all of us, we have choices.  Some of us try to cling on to our hopes that somehow we can make it go as planned, OR we can let go of our expectations and be open to, and learn to, love the life that is waiting for us.

The loss of a dream (or plan) is very significant and letting go is hard.  It does not happen easily or quickly.  In fact, I have been learning to let go and enjoy the very special, lovely things about my daughter, Laura, for 33 years.

One significant event comes to mind when I think about choices and letting go.  Thirty years ago, there was not an opportunity for Laura to attend her “home” school.  At age 3, she was bussed to another typical elementary school where she was placed in a self-contained classroom.  Inclusion was just beginning to come to the forefront.  I was ok with that … for a while.  But by the time she was in second grade, I began to think that there could be significant value in having her in class with her typical peers.  So, I made a choice and asked to have Laura placed in the regular class even though the academic gap between her and her peers was growing.  I was going to MAKE her life more like the one I had envisioned, I thought.  Since this was not the norm, at the time, the school agreed to allow Laura to go to specials (art, music, PE), and be in homeroom and go to lunch with her peers.  I was ok with that too.  It was a start.  Those were parts of her day that she really enjoyed.

But what happened next took me by surprise.  The music teacher attended one of our IEP meetings and told us that Laura was coming to music class twice a week, once with her 2nd grade class and once with her self-contained class.  He said that when she came with her peers, she sat in the back away from the other children, sucked her thumb, and did not participate.  He observed that when she came with her self-contained class, she sang and danced and played instruments and absolutely loved music.  He said that he would have never known her potential had it not been for seeing her in both environments.  Wow!  Laura was telling us in her own way that she was not comfortable with the choice I had made for her.  I had to let go and realize that, maybe this time, she knew what was right for her.

So I have learned to listen to Laura!  I learned to let go of my expectations and dreams and trusted that she was leading me down her path to a lovely life.  There have been plenty of times she has enjoyed school, work, or activities with her peers but she often prefers to interact with a group of friends with similar abilities and interests.  One day, when we were driving to an activity, she said “Mom, I love my life!”   What more could I ask for!  She shows me over and over again that her choices make her happy!

About the Author: Susan and her husband, Brian, live in Middletown with their oldest daughter, Laura.  They are also the parents of daughter, Tracy (married to Chad), and son, Chris.   Susan currently works as an Associate Teacher at St. Anne’s Episcopal School and Brian is a research engineer with the U.S. Army.   Susan has been organizing the teen/adult dances for DSA of DE for over 10 years and serves on the Outreach and Social Committees.  She also volunteers with Special Olympics DE as a registration manager for the MOT Area.

21 Stories for WDSD- Twins

I often tell my kids that they are the best Henry, Charlotte, Violet I could have ever hoped for or dreamed of.  And we did, we dreamed of and hoped for each of our kids and with so many odds that were against us, each of them is a miracle.  Henry and Charlotte are the kids that made us parents, we weren’t sure that day would ever come and after years of wanting and trying everything, we finally got the news that our ivf had worked.  I remember picking up the phone message, pulling into the parking lot of the little church near us, and calling back to make them tell me again in person cause I didn’t believe it.  I remember the tears of joy.

Now when you are having twins and they offer you that first trimester screening, your results are even more hazy than a singleton.  Nuchal fold and blood work showed that we had a 1:4 chance of one or both of them having Down syndrome, maybe.., if things weren’t too skewed.., which you couldn’t be sure of with twins…  So we held hands, drove away, shed another tear or two, said it wouldn’t matter to us if one of them did have Down syndrome so we decided to skip any further testing, and picked out names.  The pregnancy was amazing and blissful as I happily ate for three!  Even before they were born, my twins were a team as I would have to drink orange juice to get my kick counts in; Henry always came through right away and then I would wait for Charlotte to move when Henry would nudge or kick her!  I’m still waiting for the nudging and kicking each other to stop!

At their birth, it was pretty clear when she was born that our little Sweets very likely had Down syndrome with Al coming over as she was being checked and wrapped up to say that it seemed a likely diagnosis.  After we got a brief cuddle with her, she was off to the NICU and the next day we had a visit from Dr. B.  He came in to talk about their suspected diagnosis and gave us the news and information in a wonderful, positive light.  He also said that he was sure we were a little busy at the moment (our twins were born on May 13) but there happened to be this great little event called the Buddy walk that weekend and if we weren’t going to make it this year, definitely go out for it then next year!  So after that there were a few sad, confused tears and hushed conversations in the middle of the night when the fear really can get a hold of you but those were truly brief.  They were acknowledged to ourselves and to each other and we thankfully were able to let them go only to have the overflowing joy fill in where those few cracks had been.  These were the kids we had dreamed about about, this was the daughter we had wanted and now cherished, and yet she was so much more than I could have ever even imagined.

It was challenging at first but I often remind people who marvel at twins, that they were our first – we blissfully didn’t know any different!  Henry came home with us and Charlotte stayed for a month in the NICU and she went in a few months later for open heart surgery at AI.  Throughout it all, the tiredness, the new parent learning curve, the Down syndrome learning curve, we had these kids and they had each other.  They shared a crib, they explored their world, they learned to sit, roll over, crawl, and walk together, and throughout it all, Charlotte had Henry leading the way.  It comes up that parents worry about their child falling behind or not keeping up with their peers and here we were with a direct comparison of what a kid the same age as Charlotte can do, day in and day out.  But that was a push for Charlotte!  There wasn’t a thing Henry did that she didn’t want to do to: See Henry pull up on the couch? She wanted to do that too!  Run outside in the grass?  Hold my hand and let’s get running mom!  Over the past 7 years, they have attended different schools and gone to the same school, been in the same grades, and are now a year apart academically and still that push is there, Henry is reading?  I’m going to grab my book and let’s practice!

And as amazing as they are together, their differences are so cool too.  Henry is more cautious, while Charlotte can be a daredevil – I don’t think she has seen a step or ledge she doesn’t want to jump off.  Henry will talk a mile a minute while Charlotte may say a million words with her eyes before she opens her mouth.  Henry wants to do thing perfectly while Charlotte is a more intuitive soul.  And yet for all their differences, they are a dynamic little duo and all the better for having each other.

Very briefly before I finish, I have to mention Violet.  As amazing as the twins are and as great a little team, having Violet made everything so much more.  Charlotte has such a great connection with her and loves being a big sister and shares interests with her that she doesn’t with Henry.  Where Henry may take on more of a role in looking out for Charlotte, she now gets to take on that role with Violet and the pride and love she can pass on is beautiful to see.

I tell my kids they are more than I could have ever hoped for and I mean it with everything I have in me and that I have to give to them.  Before any of our kids were born, you wonder and try to picture them, imagine how time spent with them will be, what kinds of things will interest them and what conversations will you have?  Maybe I didn’t picture Down syndrome, but I did picture my Charlotte and Wow, is she better than anything I ever dreamed up.  Her smile is brighter than the sun, her hugs so joyous, her voice so endearing, her jokes so corny, her strength so impressive, and her eyes are just like mine.  I look at her and my heart swells; she is the the very best and I am so glad she is mine.

 

About the Author: Katie Orr is mom to her kids, twins Henry and Charlotte (7) and Violet (3). She is a Delaware native and works at Winterthur Museum where she and her family live. She can often be found running her kids around, dreaming of their next family trip, spending too much time on pinterest, jogging, reading a book, or visiting a museum.

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.