Samurai's story

Shortly after we found out I was pregnant, my husband and I discussed baby names. I laughed when I told him, as a teenager, I wanted to name my future child Samurai, but Allen exclaimed, “Samurai—I love it!”

From then on, we called our growing baby Sam. At 13 weeks, we received a phone call from our doctor’s office, asking us to come in the next morning to discuss our prenatal screening results. I knew there was a problem and I stayed up all night worrying.

Our doctor grimly entered the room and announced, “I’m sorry to tell you this, but there is a high chance the baby has Down syndrome.”

I sat in numb shock as she outlined all the things that could go wrong with our pregnancy and child. Miscarriage, stillbirth, cognitive and developmental delays, heart defects; the list went on and on. She then explained where the nearest abortion clinic was. When she was done, she asked if we had any questions.

“Is it a boy or a girl?” Allen asked, and I remembered we would find out the gender through the prenatal screening. I loved him so much for thinking of our baby, not the probable diagnosis we’d been handed.

The doctor scanned her papers and said, “A girl.”

Neither Allen nor I knew much about Down syndrome and we set about learning all we could. Most helpful were blogs and social media accounts from families who had a member with Down syndrome. Despite the grim picture the doctor had painted for us, it appeared every single family had plenty of happy times and dearly loved their children, brothers, and sisters with an extra chromosome.

We moved forward with the pregnancy and continued to face negativity from the doctors and specialists we saw. With each comment implying Samurai would be better off not being born, our resolve to have and love our perfect daughter grew.

The name Samurai took on a special meaning as we learned our daughter was a true warrior. She thrived throughout my pregnancy, then overcame an early birth, long NICU stay, a terrible feeding tube, and open-heart surgery at two months old to repair her large ventricular septal defect.

We loved Samurai from day one and feel so lucky she chose us to be her parents. Every challenge we’ve faced has been outshined by joy she’s brought us. Today, Sammi is a smart, healthy, adorable 7-month-old, and we can’t wait to help her achieve anything she sets her heart on.

You can follow Samurai on Instagram at @samurai_aiko

Emelina's story

Emelina Anne Victoria 💗During my pregnancy with her i was in constant fear of loosing her. I had been through a stillbirth in my 7 mounth off pregnancy Only months before I got pregnant with Emelina. It was an horrible time and my heart was broken. I cryed so much I thought I would never stop. I prayed that I would get pregnant fast. I lost my sweet Samuel in September 2015 and on the 23 of December I had a new positive pregnancy test in my hand. I was over the moon and I was dancing around

with my oldest daugther. But it didnt take long before I was afraid all the time. I booked appointments with a spesialist in pregnancy and I went regularly. As I was already over 36 years old and had been through 3 missed abortions and 1 stillbirth we could not go through that again. We did all the ultrasounds and more to check that the baby was fine . I cryed a lot and every time I didnt feel her I called my doctor. At one point I started bleeding a littel and both me and my husband was in tears.

We hurryed to the doctor and when the ultrasound showed that the baby was fine we both cryed even more . The doctor told us that its a girl and we couldnt be happier. We decided to name her Emelina from her great grandmother and Anne from her grandmother, Victoria because she would be our victory. I worked a lot when I was pregnant with her as we had just opend a bakery in Costa Rica. My feet swelled up and I was just very tired. We did a non invasive test to check for down syndrom because of my age but the results came back negative. Since we have a son with Asperger Syndrom we wanted to know in advance if our daugther would need any thing special. Her birth started in week 35 , I couldnt believe that I was in labour,  I didnt feel much pain, I just kept going to the toilet a lot . That went on for a whole day and night,  finaly my husband said that we have to go to check me out , I didnt much want to cause I was waiting for the real labour pain . At the hospital the doctor says that this is happening now , I can feel the head he says . I felt afraid since i didnt feel pain , how can i push if i dont feel it.  Also my stillbirth was fresh in my mind. This was all in Costa Rica, being that I am from Norway it was all very different.

I get put in a wheelchair ,even though I am telling them I need to stand. They take us upstairs. I am feeling a mix of happiness and feeling afraid. They come to do a last check of me and the nurse gets all stressed and starts yelling in spanish. Another doctor comes and they bring an ultrasound machine. I am looking at my husband. Finally they explain to us that the baby has changed position and is now laying bendt so they can feel her foot and her head. I am rushed into emergency cesarion. I am so confused . My husband is told to wait outside. They tell me that this has to happen fast cause the baby is not breathing good . I am thinking, not again. They explain a lot that I dont hear, I just want my daugther out of me . They tell me that when shes born they will show her to me right away. But that dont happen. I see them taking her away, into another room . Shes not crying. They come back and tell me that they think that my daugther has trisomy 21 . I dont even know what that is .

I am in recovery, my husband is send home . My baby is somewhere in the hospital alone. It is all so emotional. Finaly I get her in my arms. I cry, I can see that shes different. They are acting different with her and its hard to figure out what I am feeling. It takes me a good 15 min to understand,  I am dealing with it . I dont care what she has . She is alive and shes mine. During the stay in the hospital its hard, rough treatment and Emelina scores bad on tests I dont understand. Shes rushed to a different hospital to check her heart. I am not  allowed to go. So much crying and they dont tell me anything. She comes back . She has two holes in her tiny heart. I am in shock. I am holding her. At home we are understanding that this will be hard. No help and a lot of wrong information is given to us to make it all feel harder. But we love her so much. Thats all we know.

When shes 5 weeks everything changes. She is suddenly sick, I call the ambulance and they take me and her to the hospital. My four other kids and my husband stay behind in our house, confused and worried.  At the hospital its a fact  that she has gotten the RS virus. She is very ill .They give her low oxygen. Its not helping. And it gets worse and worse. I am not told anything thats happening, shes last in line cause of her DS and its all to much . Finally she stops breathing by her self and she is put on a respirator. Now she has also gotten bronkiolitt. I am destroyed.

I am asking the doctors for answers is she going to be ok . All they tell me is that they're not God.

I am understanding that we might lose her. But shes so strong, such a fighter. Even there,5 weeks old,very sick and with holes in her heart alone shes lying there, fighting. Cause I am not allowed to stay with her, I have 4 visiting hours a day. My day is waiting outside the hospital from morning to night, and at night I am waiting for them NOT to call. If Inget a call its because shes gone. We decided that we have to close our bakery and move back to Norway if she makes it through.

We cant live in a country that cant give her what she needs. The day I got to hold her, breastfeed again, I am never forgetting. We go home from the hospital again . This time even more afraid . I dont leave the house with her for 2 months and no one is allowed in. We are full of fear for her getting sick again. On the plane back to Norway we are holding our breath every time someone coughs. There is so much to be said about giving the rigth information, the right support.

Back in Norway, I am a basketcase, crying in every meeting with doctors. But to my surprise, they listen to me and they support me and they include us in all things regarding Emelina. They give me all the right information and tools that slowly builds me back up. Cause I was more broken then Emelina. My fear of losing her came in the way of enjoying her. The heart doctor here finds that she also has a small pulmonalstenose and a PFO. We will always be afraid of losing her, no matter what.

But she is the light in our family . She is what makes us good on a bad day. She will be 1 year in a few weeks. I cant believe it. She is  growing ,learning and beeing a baby . She goes true health issues like other babys. But if i could say one thing about beeing a mother of a child whit DS its that ,thats it ,Iam a mother, like all other mothers. She is my beautiful baby, a baby like all other babys. She deserves all the love in the world like all other babys.

It rips my heart out that we are treathing dissabilitys like something unworthy.

Iam Sorry fore writing so much ...i get  carryed away. Also Sorry fore my writing mistaces.  Feel free to use from Emelinas story what part works best

Aw, thank you! ❤❤❤❤❤❤

Show quoted text

On Sat, 17 Mar 2018, 18:45 Signe Tømmerås, <emelinavictoria2016@gmail.com> wrote:

Emelina Anne Victoria 💗During my pregnancy with her I was in constant fear of losing her. I had been through a stillbirth in my 7 month off pregnancy only months before I got pregnant with Emelina. It was an horrible time and my heart was broken. I cryed so much I thougth I would never stop. I prayed that I would get pregnant fast. I lost my sweet Samuel in September 2015 and on the 23 of December I had a new positive pregnancy test in my hand. I was over the moon and I was dancing around

with my oldest daugther. But it didnt take long before I was afraid all the time . I booked appointments with an specialist in pregnancy and I went regularly. As I was already over 36 years old and had been through 3 missed abortions and 1 stillbirth we could not go through that again. We did all the ultrasounds and more to check that the baby was fine. I cryed a lot and every time I didnt feel her I called my doctor. At one point I started bleeding a little and both me and my husband was in tears.

We hurryed to the doctor and when the ultrasound showed that the baby was fine we both cryed even more. The doctor told us that its a girl and we couldnt be happier. We decided to name her Emelina from her great grandmother and Anne from her grandmother, Victoria because she would be our victory. I worked a lot when I was pregnant with her as we had just opened a bakery in Costa Rica. My feet swelled up and i was just very tierd. We did an non invasive test to check for down syndrom because of my age but the results came back negative. Since we have an son with Asperger Syndrom we wanted to know in advance if our daugther would need any thing special. Her birth started in week 35 , I couldnt belive that I was in labour,  I didnt feel much pain, I just keept going to the toilet a lot . That went on for a whole day and night,  finally my husband said that we have to go to check me out, I didnt much want to cause I was waiting for the real labour pain . At the hospital the doctor says that this is happening now, I can feel the head he says. I felt afraid since I didnt feel pain, how can I push if I dont feel it.  Also my stillbirth was fresh in my mind. This was all in Costa Rica, being that I am from Norway it was all very different.

I get put in a wheelchair, even though I am telling them i need to stand. They take us upstairs. I am feeling a mix of happiness and feeling afraid. They come to do a last check of me and the nurse gets all stressed and starts yelling in spanish. Another doctor comes and they bring an ultrasound machine. I am looking at my husband. Finally they explain to us that the baby has changed position and is now laying bend so they can feel her foot and her head. I am rushed into emergency cesarion. I am so confused . My husband is told to wait outside. They tell me that this has to happen fast cause the baby is not breathing good. I am thinking, not again. They explain a lot that I dont hear, I just want my daugther out of me. They tell me that when shes born they will show her to me right away. But that dont happen. I see them taking her away, into another room . Shes not crying. They come back and tell me that they think that my daugther has trisomy 21.  I dont even know what that is .

I am in recovery, my husband is send home . My baby is somewhere in the hospital alone. It is all so emotional. Finally I get her in my arms. I cry, I can see that shes different. They are acting different with her and its hard to figure out what I am feeling. It takes me a good 15 min to understand,  I am dealing with it . I dont care what she has. She is alive and shes mine. During the stay in the hospital its hard ,rough treatment and Emelina scores bad on tests I dont understand. Shes rushed to a different hospital to check her heart. I am not  allowed to go. So much crying and they dont tell me anything. She comes back. She has two holes in her tiny heart. I am in shock. I am holding her. At home we are understanding that this will be hard. No help and a lot of wrong information is given to us to make it all feel harder. But we love her so much . Thats all we know.

When shes 5 weeks everything changes. She is suddenly sick, I call the ambulance and they take me and her to the hospital. My four other kids and my husband stay behind in our house, confused and worried.  At the hospital its a fact  that she has gotten the RS virus. She is very ill. They give her low oxygen. Its not helping. And it gets worse and worse.

I am not told anything thats happening, shes last in line cause of her DS and its all to much. Finally she stops breathing by her self and she is put on a respirator. Now she has also gotten bronkiolitt. I am destroyed.

I am asking the doctors for answers, is she going to be ok . All they tell me is that they're not God.

I am understanding that we might lose her. But shes so strong, such a fighter. Even though she is 5 weeks old, very sick and with holes in her heart, alone shes lying there fighting. Cause I am not allowed to stay with her, I have 4 visiting hours a day. My day is waiting outside the hospital from morning to night and at night I am waiting for them NOT to call. If I get a call its because shes gone. We decided that we have to close our bakery and move back to Norway if she makes it through.

We cant live in a country that cant give her what she needs. The day I got to hold her, breastfeed again I am never forgetting. We go home from the hospital again. This time even more afraid. I dont leave the house with her for 2 months and no one is allowed in. We are full of fear for her getting sick again . On the plane back to Norway we are holding our breath every time someone coughs . There is so much to be said about giving the right information, the right support.

Back in Norway, I am a basketcase, crying in every meeting with doctors. But to my surprise, they listen to me and they support me and they include us in all things regarding Emelina. They give me all the right information and tools that slowly builds me back up. Cause I was more broken then Emelina. My fear of losing her came in the way of enjoying her. The heart doctor here finds that she also has a small pulmonalstenose and a PFO. We will always be afraid of losing her, no matter what.

But she is the light in our family . She is what makes us good on a bad day. She will be 1 year in a few weeks. I cant believe it .She is  growing, learning and being a baby. She goes through health issues like other babys. But if I could say one thing about being a mother of a child with DS its that, thats it I am ok a mother, like all other mothers. She is my beautiful baby, a baby like all other babys. She deserves all the love in the world like all other babys.

It rips my heart out that we are treating disabilitys like something unworthy.

Grace's story

Awareness, acceptance and inclusion.  These three words are some of the most important concepts for us as human beings to understand and truly live by in order to allow one another the freedom to live and become our full potential.  Aware that we are all both different and alike in so many ways.  accepting of our differences and including one another throughout every aspect of life.  Our sweet baby girl, Gracie,was born in January of 2016.  She came into this world with big beautiful hazel eyes, gorgeous brown hair,  a sweet smile that can melt anyones heart and an amazing extra chromosome.  Learning that she had Down Syndrome was the day that forever changed our entire family
in tremendous ways.  We have all grown to become better people.  it has changed our minds on how we perceive others and the whole world.
It has opened our minds to perspectives on life itself that we never knew before.  it has made our hearts grow, on a daily basis, in love and in joy.  Gracie is now just 2 years old and has been changing minds and stealing hearts from day one.  Down Syndrome is merely a trait she was born with the same as her eyes, hair an skin tone.  They do not define who she is, same as yours do not define who you are.  We have  hearts and souls full of personality and potential.  We all want to live our lives to the fullest doing what we love, being with those with love and experiencing everything we possible can so we can attain
our full potential.  Our daughter is no different.  She wants to
experience everything same as anyone else.  she wants to be and do whatever it is she wants to be and do, same as anyone else.  She laughs, cries, feels sadness and happiness same as anyone else.  She wants to play and explore, be with her friends and families, and loves with her whole heart, just like anyone else.  Gracie has hobbies, she loves books and music.  She dances all the time. Gracie loves cars and dolls and pretty much any and every kind of toy! She loves to watcha cartoons and music videos.  Because just like anyone else, she loves to have fun and she loves to learn.  Shes a great teacher too.  Gracie has taught our family and anyone that knows her far more than any of us will ever teach her.  Gracie has a heart that truly sees the goodness in everyone.  She feels joy and she feels it to its fullest.

She has a bigger than life type of personality and everyone who meets her would agree!  She’s kind in such a pure way to everyone and loves unconditionally, accepting you fully as you are.  It would be nice if more of the world was this way.  Kind.  Seems simple.  I want the whole world to see Gracie’s adorable and infectious smile, her beautiful eyes, the love and the joy that radiates from her heart, how smart she is, how talented she is, how funny and silly she is.  How impassionate and caring she is.  Never see Gracie as a diagnosis,different or with a disability.  She has no disability.  And she is more alike than different, as we all are.  She is a human being fully able to do what all other human beings can do. And she will.  How did we get to be so lucky to be blessed with her in our lives?  Words could never express our hearts, she is our world and life is so much better with her.  Awareness, acceptance and inclusion.  Imagine a world where this is true to life for us all!  Can you picture it?
This is the world our Gracie deserves. We all do!

Candidly Kind - Grace's story

@growingupwithKeyaan messaged me after connecting through our Candidly Kind Instagram asking me to share our story. What an honor! I love talking about Grace, my youngest of 3 daughters who definitely spiced up all our lives from the beginning:) My older 2 daughters are now out and living on their own, one out of college and one still studying which left my husband and I and Grace still in the nest. 

     Grace is a senior, which, let me tell you, is a transition that crept up on me. The worry about Grace’s future and how to best navigate the options and more importantly realizing what SHE wants to do in the next phase of her life, well it is so beyond any stress I dealt with when my other 2 were seniors. The hedge of protection is just way thicker with Grace. We have visited transition programs, college programs, discussed so many things. There are options and it can be overwhelming to say the least and each are  wonderful in helping prepare our extraordinary children for life. Grace, with our help, will choose to do one of those in the future. At the moment. she plans to go to college and it is now possible through so many schools! Yay!

    Candidly Kind just sort of happened out of a eureka moment for me late last fall during all the stress of this senior year transition stuff, meetings, college visits and well just EVERYTHING. LOL (moms know what I’m talking about)

    Grace had endured a difficult experience over the last couple of years leaving her alienated and excluded. She has always had a group of friends throughout school and been somewhat included in activities and loved by so many but her junior year of high school things changed out of an experience with a sport and a coach and ultimately the girls on the team. As a mom, I fought the battle...the battle I never thought I’d have to fight, for my child. Don’t get me wrong, I had fought plenty of battles throughout her life, but this one well it was different. It even attracted national press which was not fun or invited (even though the press was 100% in our corner). I never went public with anything concerning the situation. We refused I’d say at least  50 requests for interviews. The details I’ll leave for my future memoir, but whew it was tough! I still wrestle with it almost daily so please pray for me:) 

     Through the entire ordeal, Grace kept the sparkle in her eyes, the love in her heart. As she went through days of exclusion and friends backing away, she still loved them and spoke fondly of them, hugged them while holding her head high with confidence. Yes, she knew and understood what they had done to her but she had the capacity in her heart to love and forgive and move on. My girl has the unbelievable ability to accept people and actions without prejudice or judgement even when they are targeting her in a negative way.

   I was thinking about Grace one morning while sobbing on the car ride home from taking her to school. I was feeling hurt and betrayed myself while thinking how she was able to forgive so easily. At that moment, it came to me we should share Grace’s wonderful heart through her art and authentic words. Literally it just hit me in the midst of my emotional distress. And so, Candidly Kind was founded that day in my car. I truly believe the Lord laid it on my heart. It has become a deep passion I have consistently felt must come to fruition. 

  Grace is so excited about this venture. We just released her first painting and message on t-shirts on World Down syndrome day (which is why this is 2 days late getting to Lisa...so sorry) We were slammed getting the website up for preorders and all. Grace plans to use whatever income produced for her future plans, college etc. 25% of all profits are being donated to various charities with our same vision. Ruby’s Rainbow will receive charitable proceeds from our flagship design “Be the Light”.  The design, painting and writing are all 100% Grace...(oh and the Candidly Kind logo is 100% her idea and design as well ❤️❤️❤️) We decided it was the perfect flagship design for her to share. It fully embraces our vision for Candidly Kind which is to spread light, love and acceptance all over he world. 

   Thank you for asking me to share our story! It was a much needed respite allowing me to reflect and regroup after 2 days of fun yet busy chaos during our first Candidly Kind t-shirt release. Anyone who would like to connect for advice or support please don’t hesitate. My email and door are always open:) 

Peace and love-

Carrie Key & Grace

Candidly Kind

   

Oh and please always...

“Be the Light”

Caleb Prewitt's story

Caleb’s story – WDSD 2018

I was asked by @growingupwithkeyaan to share a bit about Caleb and his (our) story for World Down Syndrome Day this year. As many times as I’ve written it out over the past 11 years, and it looks a bit different each time.

Caleb was born on March 15, 2007. We found out we were pregnant as his older sister was making plans to head to college. It was a surprise, certainly, made even more surprising by his extra chromosome 😊. After the initial shock, we recovered and found our bearings, with the help of friends, family and local supports. There were a few health concerns to deal with – two heart conditions, sleep apnea, and hypothyroidism – but we had wonderful doctors, and were soon into our “new normal” routine.

So much has happened over his eleven years, its hard to sum it all up. Therapies, Hard work, and Helpful Resources have made their way alongside Family, Friends, Community and School. Finding that Balance for a parent of a child with “Unique Needs” can be difficult. It’s something I have to work on every day. How to be the best parent I can be, for both my children (though one is grown and off on her own!), to being a good spouse, advocating, making sure my own health – spiritual, mental, physical – is on track. Unfortunately, there’s no magic trick for this, just constant rebalancing and refocusing.

Eleven! It means heading to middle school soon and looking ahead to what might happen after school. We work on many skills to prepare, and sometimes I have to remind myself to let go of the reins a bit. Caleb has had, and continues to have, a good life. When he was little, we wrote a Vision and Mission Statement for him, including Faith, Friendship, and a Productive, Healthy and Happy Life. It’s not any more or less than what we wanted for Courtney, but the road to get there looks a bit different. It’s a slower-paced road, filled with scenery and rest stops. Sometimes my impatience doesn’t much care for this road, but it’s also taught me to look for and enjoy the smaller things that life is all about.

Down syndrome awareness is important to us. It means education, acceptance and inclusion, all those things we want for Caleb and the rest of our friends. The world is filled with so many different types of people. How boring would it be if we were all the same? Our hope is that each year, WDSD can help change perceptions for the better, and our friends and loved ones with Down syndrome can find a more accepting and inclusive place to live.

Peace,

Karen (and Caleb!)

Bernadette's story

I want to speak on how behind the medical community is in comparison to the parent community when it comes to DS. 

Bernadette was a birth diagnosis. She had a very traumatic birth, after watching the doctor revive Bernadette he came over to explain everything that had happened, and what might happen depending on test results, and then he said “it appears that she has Down Syndrome.”  I think if she hadn’t had such a traumatic birth that the DS diagnosis would have been more shocking or devastating. But it took me a few min to process it and to have my sad moments. But I processed it very quickly because I didn’t care if she had DS, I just cared that she was alive. 

Bernadette got moved to the more intense side of the NICU, on that side she had one doctor throughout the whole week vs a different doctor every day on the less intense side.  We loved this doctor, she was friendly and would listen to us. She always delivered information in a kind tone with a positive spin on things. We felt safe with her taking care of Bernadette. On day three of life she came to my room and had a very serious look on her face. I was worried, was something wrong with Bernadette, why was this Doctor acting so serious? “The results came back.” Oh my goodness my heart dropped. We were waiting for blood results from her white blood cell count, she needed a transfusion the day before because her count was so low, did the transfusion not work? Was she going to need another one?  “She does have Down Syndrome.” She was so sad in her delivery. This woman knew us and knew our personalities. She knew we were fine with a DS diagnosis, so why the negative and sad tone. I looked at her and said “I know, but what about her blood work, how is that?” 

The medical field is so far behind the parent community. DS is not a death sentence. It is a blessing. There have been so many stories other moms have told me about Doctors offering termination first, and multiple times. There are so many doors out there in the DS community. Doctors need to realize the blessing our babies are. Sure it’s a struggle on some days. But it makes the other days a million times better. Bernadette is the light of my life and has changed me and everyone she meets for the better. I can’t imagine my life without her. 

Orion's story

Little did we know that April 20, 2016 would forever change our lives for the better. That is the day we discovered we were expecting Orion. Due to my significant fertility issues, we were unsure if this would ever be a possibility. Then began our incredible journey with our tiny miracle. As you can imagine, we anxiously awaited the first trimester scan to tell the world our exciting news. Somehow the appointment was not scheduled correctly so we were only slotted for a basic checkup. We were devastated to say the least. This day was so important, it was everything. There was no way we could go home and not see or hear our miracle baby. Luckily they were able to send us downtown to the main hospital later in the day to get the ultrasound. At this point, we would have traveled to Bermuda to know our baby is healthy. The scan started full of excitement with lots of talking and laughter but silence eventually took over. I couldn't help but notice the Tech measuring the same spots over and over for what seemed like forever. I knew something wasn't right so I asked but she couldn't tell me. The doctor came into the room and explained that our baby had a 96-99 percent chance of having Down Syndrome due to the nuchal translucency measurement (fluid on the back on the neck). So many emotions hit us like a ton of bricks at that moment. There was never a doubt that we wanted this child, special needs included. The newfound information did dampen our spirits with worry. We were scared of the unknown and needed so much more information before announcing it to the world. The following day, I met with a genetic counselor and took the Cell-Free DNA test. A week later, it was confirmed that we were having a beautiful baby boy with Down Syndrome. We are so thankful for early detection that can be attributed to the original scheduling error. We received and continue to receive the very best care at Johns Hopkins in Baltimore, MD. Between 16-20 weeks, multiple heart defects were discovered during ultrasounds. This is very common with DS babies. With such a wonderful medical team and technology, we were carefully monitored until 33 weeks when Mr. Orion decided it was time. He was born via emergency c-section on November 17, 2016 at 2lbs 10oz and 14 inches. He was immediately taken to Cardiology to check the severity of his heart defects. Fortunately, immediate surgery was not required. The next seven weeks were spent in the NICU watching our tiny warrior beat the odds. So many amazing doctors and nurses cared for Orion day in and day out. They became our extended family. They taught us how to care for our tiny fighter. How to administer medications, how to bathe him, feed him and be confident new parents to such a fragile being. Words cannot express the gratitude. Orion was released on January 5, 2017. We were overjoyed to finally head home and figure out this whole new family dynamic. The upcoming months consisted of multiple specialists and many appointments. Once he reached a healthy weight, the VSD repair was scheduled at 5 months of age. It was a complete success!! Although Orion has needed multiple surgeries and procedures, he continues to beat all the odds. He is a true warrior. Orion is now thriving, bursting with personality and a smile that can light up any room. He brightens the day of anyone he comes in contact with. We truly are one of The Lucky Few. 

Cedar's story

How does a Down Syndrome diagnosis feel?
It feels like the air just got knocked out of you.

It feels like the tears won’t ever stop.

It feels like someone took all of your joy.

It feels like no one will ever understand.

It feels like you are alone.

It feels like you don’t know this new little life you have grown.

It feels like fear.




Fear is the word that describes it most accurately.
There is fear of the unknown, fear of the future, fear deep seeded in wondering what your life will now be like.  Fear that wraps you like the swaddling blanket you had prepared for your very new and perfect precious life.  Fear that you will not be enough. Fear of rejection from the world.  Fear of sharing the news with family and friends. A Down Syndrome diagnosis can cause all of these feelings, and so many more.

It is a very hard and lonely place to be, I know because this is exactly where I found myself when I gave birth to my son.

It all began 9 months ago when I was elated to learn that we were expecting our 6th child.  I enjoy the chaos of our large family, we never started out planning a big family but each child brings so much joy to our home that we welcomed each and every one of them.

This last child was a bit of a surprise, not because I don’t know how babies are made (though there have been many who have suggested that when they see how many children we have) but because we were getting older and it had been 2 years since our last was born and there was no sign I would be having another.
Once I learned our news, I did find myself wondering if I was going to be able to keep up with the home, the children, homeschooling, our farm, gardening, all of it, but I just figured life would work itself out, it always does. 

My pregnancy was uneventful with the exception of an ultrasound scare…I say scare because an ultrasound tech had told us that she had some concerns that she wanted to refer us to someone else for.  Something along the lines of club feet and hands and wanting to be sure there were no other issues with internal organs… as they were not clearly visible on the ultrasound.

I was scared to death.  I cried a lot and prayed a lot.  I let God know that I just couldn’t handle a child with special needs; he had already blessed us with 5 healthy children.

I couldn’t do special needs.

We went to that level two ultrasound and I lay back while a complete stranger ran a Doppler back and forth across my round belly.  She pointed to the heart, the kidneys, and the perfectly formed little hands and feet, tears of relief fell down my cheeks.

My little one was perfect.

We were told that all the organs looked great and there did not appear to be any cause for concern.  I felt so much relief wash over me when I realized that we wouldn’t be called to be the parents of a special needs child.  I thought that is what happens to other people, not to us, I just didn’t feel prepared for that.  We declined any other tests because, though I didn’t feel I was capable of dealing with special needs, I also had no plans of doing anything but giving birth to the child God had given us.

Armed with the knowledge that our homebirth plans wouldn’t be hampered by any medical issues we proceeded planning for, and anxiously awaiting our little one.  He moved and kicked a lot, especially when I caressed my belly, and my little ones talked to my belly.  He moved and kicked so much that he couldn’t decide which end was up as he continuously flipped breech and then vertex and back again.  It seemed like a game he was playing and we joked that this one would definitely be a firecracker like his siblings.

The day came when I knew meeting my new babe was imminent, and once again this little one had a surprise, he decided to be born breech, during our planned homebirth.  (I’ll let that one sink in for just a moment)

All went very smoothly and looking back, I realize that God was giving us another gift, the gift of precious time to process.  When my husband and I began admiring our new little one, we noticed a few things that were unique about his appearance.  His little ears were folded, his eyes were slightly slanted.  We asked our midwife a few questions and she smiled and nodded that she too noticed, I just knew that we were wrong though…

We asked our midwife a few questions and she smiled and nodded that she too noticed, I just knew that we were wrong though…

A few days later at our very first pediatrician appointment, my husband and I asked the pediatrician for her thoughts, she smiled and kindly told us in a soft voice that our son had Down Syndrome.

I couldn’t stop crying. Our pediatrician was very positive and encouraging but the tears kept falling.

The next few days were a whirlwind of crying, not sleeping, more crying, and praying.  We met with a cardiologist at the urging of our pediatrician and were told that our son was very lucky to only have a minor Atrial Septal Defect and PDA that may well close on its own.

My husband, an RN, was elated.

I was having trouble processing the words.

There was a blood test done to confirm the diagnosis of Down Syndrome and I was still holding out hope that everyone was wrong, I was still in a bit of post-partum denial. His blood test confirmed that he had Down Syndrome, I cried some more.

I didn’t want to talk to anyone…because I didn’t want to cry anymore.

It is a very strange place that  I found myself in, I am normally a force to be reckoned with and I didn’t want to tell anyone what was going on because I wasn’t yet at the place where I could talk about my new baby without crying.

What kind of mother did that make me that I couldn’t look at him and smile without that smile being accompanied by trails of tears?

It all felt so wrong to me because by crying when I spoke about him I worried that people would feel sorry for us, that they would think I didn’t want him, I detested the thought of anyone feeling sorry for us or misunderstanding my tears.

I also felt that people we told would take their cues from my husband and I, and here I was a blubbering, sleep deprived, hormonal mess.  Not what I wanted anyone to see.  I wanted people to treat us like we just had a baby, not like there was a problem.

I wish I could have told myself that it was going to be okay.

I wish I would have inherently known that my smile would return and my tears would slow.

I gave my husband the burden of telling our family, friends and church what was going on, I just couldn’t do it.

The outpouring of support has been amazing but more than that, our new little one is amazing.  I worried that I wouldn’t bond with him like with my other children, I have no idea why that thought was allowed to cross my mind, but it did.

It was a waste to worry about that, as the days went by and I got more sleep, the hormones calmed down a bit and I began to process everything. I began reading story after story online of families who found themselves in exactly the same place we were.

They were all doing well.

They had beautiful children and their children were pictured doing normal everyday things.

There was an echo of words that, though ordered differently in each story, said…

I wish I could go back to those first few days and tell myself that this is not something to mourn but instead it is something beautiful.

This gift is the one that I never knew I wanted, until I got it. 

You haven’t lived until you have had someone with Down Syndrome touch your life.

Surely all of these women and families weren’t lying.

This is when I chose to begin learning everything I could about my son, his diagnosis, and others like him.

So, what does it feel like to learn your child has Down Syndrome?

It feels like fear…

But, on the other side there is hope, beauty, and the most plentiful baby smiles I have ever seen.  There is camaraderie among mothers you didn’t even know you would seek out.  There is a sense of understanding of others and a new passion to make the world an even better place so your child can live abundantly in it.
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And the tears do subside, because there is no reason to mourn when you have something so beautiful for the world to meet.

Jame's story

A short story of James, whom we love and admire:

In the early hours following a warm day in October 2003 this baby was ready to arrive; and within 2 hours was born without a fuss and ready to face the world, certainly more than his mum was prepared for! Whisked away I was left facing a young, unemotional consultant who suggested that my son had Trisomy 21. Trisomy 21? I hadn’t heard of that before. Comically the first thing that entered my head was that this boy was going to be a scientist or an astronaut! It must have been the euphoria of the birth!

Reality struck me in the face when we were told “He might not talk; he will have learning difficulties; he may not live as long as you; he will need more care …. blah, blah blah”. We called him James. He was a fighter from the start and the first few weeks of his life were spent in Special Care Baby Unit rigged up to this, that and the other. No one knew what was wrong. But then he got better and no one knew why.  

James thrived and put on weight and did all the baby things a baby does except for the continual vomiting. No one knew why because he looked so well - “Very well for a baby with Trisomy 21 you know”. Less than a year later James had 4 hours of surgery for a duodenal atresia and the vomiting stopped.

A spate of upper respiratory infections resulted in many an overnight stay in hospital. Then there was the big one. The one where countless medical staff rallied around him; where we watched on helpless and in fear as our tiny little boy was resuscitated on a great big emergency bed; we couldn’t keep up with the blue light of the ambulance as it sped him to the specialist facilities of a bigger hospital. We were told it was touch and go.

Fast forward a few years, we watched James giggle and laugh through nursery and primary school open to trying out anything that was put his way. Walking at 2, dry at night by 3, signing age 4, climbing volcanoes in Lanzarote aged 5, counting age 6, getting a sister aged 7, reading age 8, riding a bike by 9, his first trip away from home age 10, able to swim aged 11, camping with his friends age 12. His life is like other kids’ lives just delayed in some areas. James is extremely sociable, fun, a bit of a joker and has an amazing zest for life.’ He has a busy social life and enjoys his weekly clubs including drama, basketball, and sports club but mostly he just loves doing things, anything, with his friends. He loves music especially Jake Bugg and Mark Ronson. He loves films, particularly those from the Marvel Studios. He enjoys comedy, picnics, nights away, entertaining and being entertained. James is a teenager in every way!

James is now in year 9 at secondary school where he is described as kind, polite, fun and a cheeky sense of humour! He has represented Hackney in the London Youth Games and the Panathlon multisport East London championship. James is currently studying science and learning about the universe and solar system. We always knew James would take the first steps to become a scientist or perhaps even an astronaut!