Prenatal Down Syndrome Diagnosis- Faith in God’s Plan

April 14, 2018 by Guest Post 1 Comment

This day,more than one year ago is the day that changed my life forever. It’s the day that changed the path I thought I was on, to the one that God had me on from the beginning. He knew I would walk this path in life with Easton before He even knitted me together in my mother’s womb. He knew I would be here today with this sweet ray of sunshine that I have named Easton. He knew that I would feel shame, embarrassment, anger, sadness, disappointment, and fear when I learned that Easton would have Down syndrome. He knew that I would need my “tribe” to get through it. He also knew that I would eventually see the light at the end of this very dark, lonely time in my life. He knew I would still be standing strong on the other side.

Easton is truly the light of my life. He makes me happy every single day. When he smiles, I feel like my heart is going to explode out of my chest with love for him. I don’t see Down syndrome when I look at him. I see my son. I see his beautiful blue eyes, and his perfectly soft hair. I see his sweet toothless smile, his kissable cheeks, and his sweet, happy demeanor. I see his future; and let me just say- it’s a bright one! I can’t wait to watch him succeed in life. I can’t wait to see how much he accomplishes, and how many lives he changes along the way. God knew exactly what He was doing when He gave me the honor of being this little boy’s mama.

July 26, 2016 is a completely different story. It’s the day that changed my life’s path forever. It’s the day that my world was rocked. This day one year ago, I was brought to my knees in fear, pain, sadness, anger, disappointment, and shame. It’s the month that was the start to the rest of my life. The day that started me on this crazy roller coaster of a journey called motherhood. It’s also the day that brought me closer to God.

One year ago today, is the day that I got the phone call. The call that would change life as I knew it. I heard the genetic counselor (whom I had NEVER met before this) say, “Unfortunately, it looks like your Nuchal Translucency test came back with a very high risk of Down syndrome.” “What does that mean?”, I said quickly in shock and disbelief. “Your scan of the fetus looked fine, but the blood work came back with a 1 in 126 chance of the baby having Down syndrome. We need to pursue further testing to find out more.”

To simply say that I was in shock would be an understatement. I couldn’t wrap my head around this concept. Down syndrome? My baby could have Down syndrome? There is no way. That is impossible. Stuff like this doesn’t happen to me. 1 in 126 doesn’t seem like very high risk. That’s still less than 1% chance. -I tried everything to talk myself out of it, but at the same time, I already knew.

I was out of town at a funeral for a family member of my husband when I received this phone call. I remember feeling so many emotions at once. Waves of them just washing over me, all while I was trying to smile and seem like everything was okay. I longed to be anywhere else- anywhere that I had some privacy so I could grieve and process what I had just heard over the phone.

As soon as I heard the genetic counselor say there was a chance, I knew immediately. Looking back at my life, God has been preparing me for Easton for years. He knew my life plan before I was even born. He knew He was going to give this child to me. He knew I would be able to handle it. He also knew that I would need some preparation before hand, which He gave me.

I have had this feeling/fear my entire life that I was going to have a hard time getting pregnant. I don’t know why. All my family members would tell me I was crazy. My mom and sisters have never had a problem with fertility, so they said I would have no problem. Still, I just had this feeling that I was going to be different. I would talk to family members about being my surrogate (jokingly, kind of) if I needed it.

So when Drew and I made the decision to start trying to have a baby, I was terrified. I was so worried it was going to be so difficult. I have seen so many of my friends have difficulties. When I took that first pregnancy test, and it showed positive, I lost it. I couldn’t believe it! I honestly kinda blacked out in those moments after. I was in shock but so overwhelmed with excitement. I couldn’t believe I was actually pregnant, and on the first try. I remember thinking how lucky we were. I knew how hard it could be to get pregnant. I definitely did not take it for granted. I remember thinking, this is too good to be true. I was blissfully and ridiculously happy the next 9 weeks, until that day, July 26, 2016.

Once I learned of Easton’s prenatal diagnosis, the grieving process was hard. There was denial, anger, shame, and then so much sadness. One day I fought off the grief enough to reach out to the people closest to me. Once I stopped keeping this secret to myself, and started sharing it with very close friends and family members, I started to feel so much better. With each person I told, it was like a little piece of weight was lifted off my shoulders. I was so worried about what other people were going to think. Were they going to love him? Were they going to think something is wrong with me, or this is my fault in some way? Were they going to make fun of him? Were they still going to be excited about my pregnancy and his arrival?

When I started sharing this news with my close family and friends, that’s when I realized God had started preparing me for this. Each and every person I told met the news with grace, encouragement, support, and love. They assured me that they would love Easton with everything they have, his life was something to be celebrated, and that he would make a meaningful impact in this world. I started to realize that God had purposely put these people in my life. He had led me each place the past 15 years for a reason. He put Drew in my life because He knew that THIS was THE person that was going to be strong enough to stand next to me through all this. He gave me an amazing family, friends, nurses, and doctors. As I am sitting here typing this, I am truly realizing that He has been walking alongside me through this entire journey. Even though His actual footprints aren’t present- the proof of His presence is everywhere.

I know Easton is going to make a meaningful impact and difference in this world we live in. I just pray that I am also. I hope that a mom who has had a Down syndrome diagnosis reads this and realizes that there IS a light at the end of the dark, lonely tunnel that she is in. So to that mother: Your baby will be AMAZING. Your baby is worth it. It’s okay to feel all the emotions that you are feeling. Feel them. Embrace them. But just know, that once you have your sweet babe in your arms, you will feel so silly for feeling the way you did. You will feel as though those tears you shed were for nothing because this IS the child that you always wanted- you just might not have known it yet. Be joyful and take pride. You are on a journey you never knew you wanted to be on. But trust me, you will love it.

Krista lives in Fredericksburg, VA with her husband of three years, Drew. They are parents to Easton, who was prenatally diagnosed with DS, and two fur babies, Savannah (a cat) and Macho (a rambunctious pug). Krista is a third grade teacher in Stafford, VA. When she isn’t working she loves to spend time with her family and friends, and sharing their story on Instagram and Facebook. Follow Krista and Easton on Instagram @everydaywitheaston.

Down Syndrome- What I Would Have Told Myself in the Beginning

April 9, 2018 by Dawn@cedarsstory.com 4 Comments

Down Syndrome- what I would have told myself in the beginning if I had only had the words. I was broken back then, but I healed faster than I thought possible.

But back in the beginning, I heard the two words, Down Syndrome, and I cried.

I cried because I was scared, I cried because I was ignorant, I cried because I didn’t know what else to do.

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I will change the world for my child

March 20, 2018 by Dawn@cedarsstory.com Leave a Comment

Be sure to check out our new Children’s book Down on the Farm on Amazon!

A mother loves unconditionally, but the world is not always so kind. I will change the world for my child, or at least the perceptions of Down Syndrome that are so antiquated.

A LIFE CHANGING DIAGNOSIS

I gave birth to our 6th child with the expectation of adding another beautifully brown eyed, boisterous personality-laden child to this world. I thought I had this raising babies thing down pat, most moms don’t do it six times, so I knew what to expect, or so I thought.

When my Cedar was born he had a surprise to share with us. He was born with Down syndrome, a fact that had been hidden from us until the moment of his birth. When those two words were placed squarely in my lap, I was overcome with fear, grief- dare I say even terror of what this life was now going to be like. I felt life as I knew it was slipping through my fingers and I would never again be filled with joy and happiness.

COMING TO TERMS WITH THE DIAGNOSIS

I knew nothing of Down Syndrome except for the intellectual delays, the noticeable physical characteristics, and the stereotypes. I learned very quickly that even Google was not on my side, the information I found scared me more than comforted me. I cried so many tears that my face threatened to remain crimson, and my red sore eyes were glassy and red-rimmed. My fears came in waves as I was scared of the 16-year-old Cedar I had yet to meet, the 30-year-old Cedar who may not carry on a typical conversation, and the 45-year-old Cedar who might be here alone when I am gone. All of these fears while looking down at the peaceful, angelic face of a babe newly born and weighing 8 little pounds. I prayed, cried, read, and hugged this tiny human. I slowly began to realize that this babe in my arms was not scary and was nothing to be feared. In fact, this tiny human was going to teach me as much as I hoped to teach him. Each day I became stronger, I found other families who were in the same place I was, had been the same place I came from, and were moving forward to the place I wanted to be…at peace and smiling once again.

I searched out and found pictures of children who had Down syndrome that were smiling, reading, swimming, laughing, going to school, visiting the zoo, and just being children. What I didn’t find was all of this hope in one place. I had to search for it, I had to put together endless key words and search past the initial pages that popped up in Google searches to find the true stories of families raising children like my Cedar. They were like hope in breadcrumbs scattered here and there for me to find and grasp tightly to. That is when Cedar’s Story started to form at the edges of my mind.

What if I could help the next mom who was glassy-eyed, fear-filled and seemingly alone? What if she could find that other moms had felt the same feelings as she did, what if she could see beautiful families moving forward? What if she could find answers that were not sterile and full of medical jargon that she would glaze over in an effort to understand? I wanted to help that new mom and I wanted to educate others, surely there were people as ignorant as I had been. I wanted them to see not just my child, but also others like him, and recognize them as beautiful humans, not just diagnoses. I wanted them to see Down Syndrome and think hope, tenacity, confidence, kindness, joy, and amazement.

In short, I wanted to change how the world saw Down syndrome, I wanted to change perceptions. It was then that I realized my son was changing me in ways I didn’t know possible. His birth and diagnosis was going to have an impact far beyond the reach of just our immediate circles. He himself was going to change perceptions and I was going to help with the platform to do so.

CEDAR’S STORY

I had already been an established blogger for a number of years before I launched this blog, I had already learned a lot through trial and error with my homesteading blog. With prayer, and urging, we launched this site in March 2017 and within 30 days we had hit over 20,000 views. I began receiving messages from women around the world (Philippines, China, England, Africa and so many more) saying that they were finding hope. It is with the generosity of a whole community that this is happening, by sharing stories from families around the world from diagnosis to topics that interest those raising someone with Down syndrome. It is the collaboration of many families, that has made this possible

So, Cedar was born, a website was launched, a community was knit even more closely than before and all because of a diagnosis. Down syndrome is not to be feared, it can be a beautiful journey and this little boy is teaching his mom just that. I want to change the world for this little boy, and all the others like him.

In fact, I want to be able to reach children when they are young and I am happy to share that we just released our very own Children’s book on Amazon. It is my hope that this book will help change perceptions and normalize these beautiful children who show the world tha they are #morealikethandifferent.

Congratulations- A Down Syndrome Diagnosis (Emmie’s Story)

March 12, 2018 by Guest Post 2 Comments

I remember the moments all too well. The moment when I sat there alone hearing that a blood test was recommended to see what was going on…the moment that I sat there crying telling the girl drawing my blood that I didn’t know if I could do this, but that I knew I had to take care of myself before I could take care of anyone else (meaning, my husband)… the moment that I was told Emmie had a 99.1% chance of having Down syndrome. I remember them so vividly that it feels like it was yesterday.

But it was over a year ago. It was almost a year ago that I started the most wonderful journey of my life when Emmie came into the world.

And in the last year I have learned so much. About myself. About my job, my husband, my family (immediate and extended), social media, companies, laws, my child’s diagnosis…the list goes on. But today, I want to take a minute to talk about what I have learned from the last year and a half.

I was pretty early on in my pregnancy (about 12 weeks along) when I got the phone call and Dr. Walker saying:

“Hi Kortney, we got the results back from your blood tests. It shows that you’re having a baby girl, congratulations, and that she’s got a 99.1% change of being born with Down syndrome.”

“…wait… what? Down syndrome?” I asked

“Yes. That’s what the results came back as. Down syndrome.” She responded

“Not Turner syndrome? I thought we were concerned about Turner’s syndrome?” I asked back.

“I’m not seeing results for Turner’s but this test is pretty accurate and it shows a good chance of Down syndrome. Let’s have you come in in a few days and we’ll talk about what this means going forward. Have a great night!”

And then she hung up the phone.

I was so confused. I was prepared for the worst. I was prepared for a baby that was never going to make it to full term or die at childbirth. The scans had shown so many indicators (soft markers) for it. So I now had to re-collect my thoughts and figure out a new plan. I stood there in the bathroom, staring at myself in the vanity thinking “Now she’s got Down syndrome, too? This isn’t what I was expecting. I’m not prepared for this.”

I would be lying if I said I didn’t cry when I found out that Emmie would most likely be born with Down syndrome. In fact, I honestly thought “How did this happen to me?”

After I got the diagnosis and I had actually started to think about what could possibly go wrong (There were so many “could be” situations that came along with this diagnosis. Cancer, heart disease, open heart surgery, diabetes, blindness, deafness, speech issues, feeding issues, sleep issues…the list goes on and on. And some of those fears are still very real. Some have gone away.)

And for a moment I thought it would just be easier if she was never born. I was so afraid of how this would affect my future world that I had dreamt up. I had visions, and some of those visions have changed, but some of them have not.

I think back on those days now and wish I could wrap my arms around my devastated self, crying alone in my walk-in closet, and say “It’s all going to be okay.” I tried and I tried to tell myself that over and over but my uneducated got the better of me and I was easily sucked into a self-pity party and the tears would come back. (I say that because I was informed about Down syndrome as I’m a teacher who has had students with Down syndrome in my Foods Classes, but not properly educated about their lives and abilities)

A few days later we found ourselves sitting in the Dr’s office again, waiting for Dr. Chalmers to come in. I remember being so nervous. Like I was going to the Principal’s office for something.

I remember him coming in so happy. He slid the rolling chair over and plopped down saying “How are ya today? How’s business going?” just as he always did. I think he could read the emotion and the nervousness on my face.

“We’re fine. Business is good” I said trying to be the happy person I used to know…

“So, I hear Dr Walker called you with the exciting news” he told us

I sat there and thought “Exciting?? Are you kidding me?!”

I didn’t even had a chance to respond when he started saying:

“I’m sorry this pregnancy isn’t going the way you planned or thought it would, but Down syndrome is the greatest thing. I have a {family member} with Down syndrome and man, what a blessing! {This person} has a job, goes on vacation, is so funny. We love {this person} – like, probably the favorite family member. No, definitely is the favorite person in the family. Like, we all love going to family reunions because of {this person}”

I remember the mood instantly changed in the room, and so did my attitude. I went from thinking “I can’t possibly do this” to “This is going to be okay. We are going to be okay”

I don’t remember much else about that appointment or what else was said but I remember him saying “Okay, well take a few days, do some good research, call us with any questions and then we can talk about what you decide. This is going to be fun!”

And just like that- my world was put back together. It may have been glued with Gorilla Glue, and it didn’t magically fix the issues that we were looking at, but it changed my life. There is a part of me that truly believes that I never would have carried Emmie to term had I experienced something else. We still knew that Emmie had an uphill battle, but instead of it looking so dark and grim, it was looking a little lighter and happier. All thanks to a Doctor who was willing to cut me off and tell me how it really was; someone who had actual real life experience with this and wanted others to experience it with him.

For me, this is what I needed- time to cope and research, and have the backing of an experienced medical staff to help me along every step of the way, doing anything they could to help me find the happiness and peace that I needed to enjoy my pregnancy.

And now- over a year later, I’m still learning things. At first with Emmie, I thought that my Doctors didn’t know what they were doing. I thought they had some expectations of what her life should be, and would be. I was almost positive that I knew more than them. But as time has shown, they do know her, and they do know what is best for her. They have been so open with me about what is best for her, and how to treat her. We’ve had some great conversations about how Emmie is breaking all the rules on Down syndrome and showing the general population what it’s really like. Now, granted, we’ve have some super good luck with our little Unicorn Princess, but she’s been able to reinforce that a diagnosis doesn’t mean the same thing for every person. She’s hit her milestone. Some of them have been early. She sits, rolls, claps, waves, eats, sleeps, drinks, gives high fives, plays, laughs… just like any other baby. She has her likes and her dislikes. She has her feelings and she’s not afraid to show it. She has her routines and she likes them. She has her successes and her fails. And we all (Doctors included) love every second of it.
Because she’s been so healthy and active, we have to sometimes remind ourselves that she does have Down syndrome. We don’t look and her and see Down syndrome. She was going to change our lives no matter what. She’s our first baby. We have/had nothing to compare her to. We know no different than her, and we wouldn’t change it for the world. She’s the best thing that’s ever happened to us. Okay, maybe I’m a little more paranoid and over protective, too proactive in her life… But that hasn’t been a bad thing. This is something that our doctors have come to appreciate and help me to cope with. They laugh when they think about how the next child will be treated- they are almost positive I’ll be the most overprotective mother ever. But the way that I look at some of these “fears” now- is that we have warning with Emmie. We have a road map so to speak. When something is going wrong, we know where to start. We know what to expect, what is common…

At first, I was afraid to tell many people about the diagnosis we had been given. Because quite frankly, I was afraid they would tell me what to do. And I needed my own time to figure out what was best for me and my growing family. But now, it’s something I constantly share. I want to show the world that Down syndrome isn’t scary- it’s beautiful, and exciting, and happy.

Kortney is a full time teacher at a local high school. She and her husband are also business owners living in Utah, trying to encourage other businesses to make their workplace an inclusive workplace as well. She loves to dance, sew, design, and make others feel good about themselves by selling Rodan and Fields on the side. She is an avid shopper and loves to find a good deal. Follow her on Instagram @kortney.b and on her blog here.

Have you gotten your gear to show support of loved ones with Down Syndrome? Use code “wdsd” for FREE shipping until 3-21-18 when you order today!

Orange Socks- Prenatal Diagnosis Support Site (the man behind the socks)

March 1, 2018 by Dawn@cedarsstory.com Leave a Comment

Orange Socks is a forward thinking site developed to help families connect with others a Prenatal Diagnosis Support site that allows parents to actual hear audio recordings of parents sharing their stories and their experiences of a child with a diagnosis.

It was when I first began sharing my own story about Cedar, that I found the Orange Socks Instagram page. I actually think we hit Instagram right about the same time, I shared one of the first posts I wrote about Cedar there, it was 7 days before their website went live. (You can see my baby bump in one of their earliest posts). I love their mission and the back story behind the name, Orange Socks.

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