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.

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.