I want to start out by saying thank you. Thank you so much for all the congratulations, the well wishes, and the words of encouragement to me and my husband as we start this new journey as parents come June. It means SO much to me. I can’t even begin to tell you how much. I’ve cried many tears over the messages and comments y’all have sent, and I am forever grateful.

Just a few days after World Down Syndrome Day, March 21st, it was confirmed via amniocentesis, that our baby girl will be one of #theluckyfew with an extra special additional chromosome. I spent so much time crying & grieving for the child I’d thought we’d have, pissed off, and just so confused the past couple months. I’ve had to tell myself 1,000 times its nothing I did, there no explanation for it – it just happens.

But through it all, I know her life will shine a light into this world. God has placed her in our life for a reason. I don’t know what that reason is yet but I look forward to the day I find out. She’s already got the best Dad who I know will be her biggest supporter and advocate and who will help me teach her to live fearlessly and do anything she puts her heart into.

I can’t wait for the day we take her Disney World and see the magic through her eyes. I want her to dream that anything is possible and to have an endless imagination. Disney has always been a place of comfort where we can recognize our differences and celebrate what makes us unique. I want her to see how special a place it truly can be.

To bring her to the place where I met my best friend nearly 10 years ago, who hugged and cried with me the day I found out she was extra special, and who will love her like her own, means the absolute world to me.

“The flower that blooms in adversity is the most rare and beautiful of all.” -Mulan

OUR STORY

I opted in for genetic testing as it was included in my health care. I thought, might as well just draw some more blood since I am getting it drawn anyway for other things. What’s some extra tests, it can’t hurt? I knew no matter what genetic abnormalities may come our way we would love the baby with our whole heart.

I got my first phone call January 10th, the day after Caela and I ran the WDW marathon. We we’re sitting in Homecomin’ at Disney Springs eating lunch just before we were supposed to head to the airport to go home. That moment and the rest of the night was traumatic to say the least. I sat and bawled on the little dock outside the restaurant trying to take in the information being thrown at me. I was told not to worry quite yet because a QUAD screening can be quite unreliable. But I am a worrier at heart and couldn’t help myself – my mind wouldn’t stop racing. I shut my phone off the rest of the night and went straight to bed. The next morning we went to the hospital to get my blood drawn again for a NIPT (MarteniT21) test. NIPT tests have a higher reliability, being 99% accurate to detecting Down Syndrome.

It took about a week to get the results. How I made it through the week is beyond me. Caela sent me a few books to keep my mind occupied. We visited family in Louisiana for a few days and I walked the dog a lot. The days just seemed to crawl by. Unfortunately, we got the POSITIVE TRISOMY 21 test results that we were so hoping not to get. I put that in caps because that’s still all I could see in my mind as I read the lab report – bold and capitalized words just crushing me.

My mom flew down to see me the very next day. I met her at the airport and we just stood there hugging and in tears. I am crying just typing this. Without her I wouldn’t have picked myself off the couch that day. I have an amazing husband, but a hug from my mom brought me so much comfort.

I had an ultrasound scheduled a few days later. They cannot diagnose Down Syndrome from a screening test (NIPT), because in very few cases it can be a false positive. It is with a NIPT test AND a detailed ultrasound from a maternal fetal medicine office where they can further determine the prognosis. In my case there were no markers on the ultrasound. Some markers that indicate DS are dilated brain ventricles, absent or small nose bone, increased thickness of the back of the neck, an abnormal artery to the upper extremities, & bright spots in the heart indicting a heart defect.

So I left with very few answers. My blood was telling me one thing and the ultrasound was telling me she looked perfect. DS can only be detected on an ultrasound 50% of the time.

My only option remaining, if I truly wanted to know, was an amniocentesis. It is a procedure where they take some amniotic fluid for additional testing and this test is 100% accurate. I debated for about 2 months and went back and forth in my mind on whether I wanted to do it or not. It came with some high risks (I won’t get into those) but it was just a big decision. If I didn’t move forward with that then I would ultimately have to wait until birth to get a diagnosis.

After doing my own research, talking with a friend who works in this field and also with my doctors, I made the decision to finally move forward with it. I stayed completely off google when making the decision. Google is a scary place and I didn’t want to hear advice from others. I wanted to make my own decision. It was 100% the right decision for me and I would do it again. The procedure was relatively painless and only took about 5 minutes. I kept my eyes closed the entire time and left the observation up to my husband, haha. It took about 13 days to get the results back and they came back positive.

Trust me when I say, I know my life is blessed in MANY ways. But right now life just isn’t fair and it sucks. Whatever hardship you are currently going through, whether it be a situation similar to mine or something else truly difficult, please comment here on the blog or reach out to me as I’d love to pray for you. We can’t see the light at the end of the tunnel, yet, but we will get there, I promise. Surrounded by the love of my family & friends and faith that God has a plan for her extraordinary life, I know we will be okay.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know the testing of your faith develops perseverance.” – James 1:2-3

As for what I am doing now – I can only say I’m still processing. I cannot wait for the day I get to hold her in my arms and tell her she is perfect. I know some worries will stay but I know many will fade away. Am I ready for the roller-coaster? Maybe, maybe not. But I will live day by day, making the most of each one doing my best to rise up and keep moving forward.

the extra lucky parents,

Kalyn & Taylor