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World Down Syndrome Day

Happy World Down Syndrome Awareness Day! I’ve been working hard on the cutest blog you’ll see all day, but you probably can already tell. I collaborated with my dear friend Martina Rachau Photography and met up with 5 local ladies and basically had the best day ever.

This was all orchestrated by darling Mom and advocate, Emily Fox. “Every year I try to celebrate World Down Syndrome Day (3-21) a little different. 2 years in to this journey and I’m ready to gather other mamas who may be new to the gig.  I also really want to be an advocate and show our community that this diagnosis is actually pretty amazing, with the right perspective.”

Emily reached out to 4 mamas who in the last year have received a babe rockin’ that extra chromosome, and here we are, ready to show their stories to the world.

Each Momma is sharing their story here, all real, raw and vulnerable. Emily said it best when she said “To the mama who is or maybe one day will be, processing a diagnosis and finding herself crying more tears than she ever knew she could…There is an ARMY of  mamas waiting to answer your call and hear your fears. We are on the other side and it’s a new day.” And a really big day to celebrate. So, let’s get started!

This was all put together super quick – an outreach Facebook post, and few messages, a shoot date a week later and bam! (And for sure, I can promise this won’t be the last you’ll see of us!) When we were brainstorming ideas for the shoot, I couldn’t stop thinking about #extra – how they rock that extra chromosome like no other, so we put on our bows and bow ties and got to it.

Meet Lukas.
Throughout my pregnancy I knew something was different, I could just feel it.  Never in my wildest dreams did Down Syndrome cross my mind as a possibility, but I knew this child had an eerie gentleness about him.  My water broke at 36 weeks, which was a surprise, little did we know all the surprises we were in for. After a very intense delivery my husband and midwife caught our son and put him on my chest.  Excited at the news of another boy, I held him, looked into his eyes, and for a moment questioned, “Whose eyes are those?”. Within a few minutes the midwife and pediatric nurse came back in the room together to share that they both independently noticed he had markers for Down Syndrome.  That was the moment when our life stood still, I didn’t know if I would be able to breathe again, and the intense heartache of losing the child we had expected collided with the love we had for the baby boy that was swooped away to be examined. The juxtaposition of emotions those first few days is indescribable, but I’m so thankful for the grace and kindness that was bestowed upon us at Clarke Memorial Hospital.

 

What makes your little one Extra?

Well those very eyes, oh do they have a twinkle when he smiles.  Lukas can light up any room with his smile, it is PURE joy. He is also the best snuggle bug around.  All of his teachers at school love holding him, he melts into you, cups your face with his hand, and snuggles in.  Lukas can erase a bad day in a single snuggle. We love him and all of his Extra.”


Next on the roll call, Boone.
In November 2016 the Lord did a beautiful thing. An unexpected, unplanned, life-changing thing. That day was supposed to be the birth of our “surprise” baby, our baby that was unexpectedly coming into a home where we thought the baby season was over. On that day in November with the sun beating through the hospital window, we were waiting for our first boy, and the baby our doctors had all called A+, perfection, a completely typical pregnancy journey.  But with doctors surrounding us and the presence of God surely filling the recovery room, a tiny baby boy was placed in our arms. There were tears. This moment was much different than we had planned and the words that we heard were anything but what we expected. Our unexpected surprise baby had an unexpected extra chromosome.

In an instant our worlds felt unsteady, unsure, upside down almost. As sure as the tears came so did the spirit of our Jesus, He rushed in. Made his presence known through NICU nurses and neonatologist and the insight of friends who’ve walked this road and friends skilled in medicine and the words and actions of friends and family that left us humbled and weepy from their love.

That day we met our beloved Boone Thomas Fox, a trailblazer for sure. A boy that may be a surprise to us but has a path very much planned by God.

What makes your little one Extra?

On 11/21/16 I hit a jackpot on a lottery I wasn’t even intending to play. But I won. I won this little tiny human who stretches me beyond anything I could ever possibly conceive for myself. Boone is “extra” because he brings an element of joy to our family we would have NEVER achieved on our own. He sets us on a path where our priorities need to be, he makes of focus on what really matters in life.”

Amelia Kate.

“October 18, 2018 I went into HMH for my third c-section! We finally decided on a name towards the very end of pregnancy, Amelia Kate! I couldn’t wait to put her sweet face with that oh so perfect name!

Adam came in and took his seat beside me and held my hand and had the camera ready. We joked, we talked, we took our bets on how big she would be, we prayed and we waited. Adam is standing and watching and  I here everyone start cheering! “Here she is,” “Look at those cheeks,” “She’s so beautiful,” “Look at those rolls.” All the while, I was laying there strapped to the table just waiting for that cry! I needed to hear that cry. Finally I did but It was so quiet, it was different than the other two. The other two came out mad at the world… not Amelia. Thankfully, I didn’t know that they had her over in the corner giving her oxygen and using the neo suction. Adam went to cut the cord and I hear him say “is she okay?!” My heart was hurting, I needed to see my baby. It seemed like it had been 10 minutes at least since she was here. I knew something wasn’t right. Finally, I saw her beautiful oh so perfect face. I immediately thought “she looks like she has Down Syndrome.” I knew nothing about Down Syndrome. I pushed it to the back of my mind, she couldn’t really have Down Syndrome, I would have known from one of the ultrasounds or something. I knew the moment I saw her, but I wasn’t ready to face that. I didn’t sign up for this. I am not a good enough mom for this. I have no clue how to care for a baby that has Down Syndrome.  Oh Lord, you got this all wrong.

Our doctor came in and held Amelia. She told us how perfect she was, she told us how she looks just like her brother and sister. She commented on her cheeks as well. Guys, those cheeks were huge! She asked if they had mentioned anything to us in OR… She said they told her they thought we knew… Then she said it. She told us that Amelia has Down Syndrome. I was numb. I needed this to be wrong and to go back and start this over! She hugged me, she told me she is perfect and that everything would be perfectly fine. She promised God made this special girl just how he meant to and we all know he doesn’t make mistakes!! I kissed her and prayed it wasn’t true. I wanted God to make her “better.” I was grieving a child that wasn’t, all the while I was celebrating this beautiful girl.

At her 1 week weight check. Her pediatrician came in and while we were there she told us that she had already gotten the results and Amelia had Trisomy 21. She again loved on us so well. She asked if we had questions, she told us she’s perfect just the way she is and that God has great plans for her {and us!} These were the results that we all knew deep down were coming.

What makes your little one “extra”?

We all dream of the plans for our children and we easily forget that it’s not our plans at all, it’s His plan! Amelia is “extra” because she is God’s plan for us.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future” Jeremiah 29:11

 

Next up this sweet little hunk, Ryan.
I learned of Ryan’s Down syndrome when I was about 24 weeks pregnant. I was seeing a regular OB/GYN in Women’s Care of Bardstown when they weren’t seeing what they needed to on the full anatomy scan at 20 weeks and sent me to Norton’s MFM to get a better look at his heart. There we learned of his CHD and “absent nasal bone” which would bring up the Down syndrome. I was offered the NIPT blood test and amniocentesis – I opted to do the NIPT, but decided the amnio was too risky for my liking. We had a 98% of T21 with the NIPT. We knew we were in for a unknown path.

 

What makes your little one Extra?

Ryan is extra special because he is not “special needs”, he is our special need. Ryan came at a time when our family needed him most. He has no idea what a blessing he has been to his family before he was even born. And even through the doubt and fear that comes with a diagnosis, he has been the most joyful humbling life experience. He just radiates joy. The excitement we feel with every milestone cannot be contained. The shift from diagnosis to real life journey for me is unbelievable; a journey one can only know by experience.

 

And last but not least, Ty. (This babe has even been on Good Morning America! ;)


When I was 14 weeks pregnant, I went in and had some blood drawn for a NIPT (non-invasive prenatal testing) to find out the gender of our baby. It screens for other things but I was only interested in gender. Two weeks later, the nurse at my OB’s office called me and our conversation went like this, “Hi Stephanie, this is [nurse’s name]. I’m calling you about your test results.” “Oh hey yeah! What’s going on?” I knew my test results had been delivered 5 days prior so I was a little worried about what was going on but I had no idea what was coming next. “I just wanted to let you know that your child screened positive for Trisomy 21. That’s Down Syndrome.” The news hit me like a ton of bricks. This was totally unexpected. She then went on to say that she was only calling me because she didn’t want to delay my results any further since the specialist had called their office wanting to know why I hadn’t made an appointment. She said everything so matter-of-factly like she hadn’t just delivered life-changing news. At the very end she asked me if I even wanted to know the gender of my baby. Uh yeah! She told me we were having a boy and then hung up.

“I called my husband several times but he didn’t answer. Five minutes after hanging up with the nurse, my OB called. He told me about the accuracy of the test and that I was very likely pregnant with a child with Down Syndrome. He then offered me termination. I immediately told him, “No.” He said, “Well you’re what? 16 weeks along? We can’t terminate past 22 weeks. So you don’t have a lot of time to change your mind.” I was so angry at him but I also had a million other emotions going on so the best I could muster was, “I’ll let you know.” Abortion is not something that either of us believe in and I certainly wasn’t going to abort my otherwise healthy child! Thankfully, my care was transferred to the specialist who was absolutely amazing. Since that time, I have written a letter to the hospital system that employed my original OB. The Director of Physicians for that hospital system actually called me from his personal cell phone number to thank me for writing the letter. His brother has Down Syndrome and he was absolutely floored that an OB only offered me termination. He promised me that things would change I absolutely believed him.

 

What makes your little one “extra”?

  This kid loves to cuddle. I mean, loves it. Even when he was in the NICU, all the nurses would comment on what a cuddle-bug he was. He loves to nap on people’s chest and he just nestles right in. He recently learned how to give kisses and that is his new favorite thing. He loves to show love and spread love. This kid is all love.”

As you can see, there is NOTHING down about it. Thank you for helping us celebrate not only these love bugs, but those all over the world ROCKING that extra-chromosome. You have an army of love and support behind you. Hopefully reading these stories will soften the broken hearted mama who gets the diagnosis, and know there is pure love and joy ahead in your journey!

Local Resources (Central Kentucky): dsheartland.org

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