Mourning a World Without Down Syndrome

Earlier this week, CBS news released an article about Iceland nearly "eradicating" Down Syndrome. In the words of actress Patricia Heaton, " Iceland isn't actually eliminating Down syndrome. They're just killing everyone that has it. Big difference." Sadly Iceland is not the only country with devastating percentages of abortion through Down syndrome  prenatal diagnosis; most countries are not far behind. My heart aches at these statistics because they tell the world that people with an extra chromosome have no value, no worth, no purpose to fulfill in this life. But I am here to tell you how far from true that is! 

On Wednesday, November 6^th, 2013 I received a phone call that I felt changed my life. I had just finished teaching my morning Kindergarten class and was about to head to lunch. When I answered, I realized it was the hospital, my heart skipped. I was 11 weeks pregnant to the day and was expecting results from a genetic test we took earlier last week. “Hello Jill, do you have a minute to discuss the results of your Maternity 21 test?” The next few minutes are honestly a blur of words resulting in I’m sorry, but your unborn daughter has Down Syndrome. No “Congratulations”, instead “I’m sorry!” Looking back at this moment, my heart just aches because the next moment consisted of me dropping to my knees in tears, in the middle of a Kindergarten classroom, rather than celebrating the fact that I just found out that I had a beautiful baby GIRL living inside of me. My heart and my mind battled for the next few minutes. My heart cried out-this is your baby girl that you will love unconditionally, but my mind cried out all the Wikipedia facts that I learned in my special education classes in college. After nearly 15 minutes of crying in my classroom, I picked myself up went to the cafeteria and then to the teacher workroom to eat with my coworkers and friends. My intentions were to keep silent, eat quick, and head back to my classroom to prepare for my afternoon class. I already felt so guilty and ashamed for feeling sad I didn’t need others to know about it. But because of my amazing coworkers who truly cared and loved me, they saw right through my façade and asked what was wrong. I broke. Ugly tears and all. I had every intention to suck it up, put a smile on my face, and teach my afternoon Kindergarten class, but once again because of my amazing coworkers they arranged someone to take over and let me go home. I felt silly to leave work for this, but was beyond grateful! After all, my baby hadn’t died, but I still felt like I needed to mourn. Mourn a life that I thought was lost.

My initial reaction was to go straight to Vaughn and “mourn” together, which I failed to mention earlier, but he was a thousand miles away on a mission’s trip in Nicaragua. I decided to go to our church, so I didn’t feel completely “alone” in this and was greeted by several of the awesome staff that prayed over me and my unborn child. We prayed for peaceful hearts, as well as miracles for health and healing. I left feeling uplifted and encouraged and ready to take on this adventure- until I got home. When I got home- I crawled into bed with my computer and went straight to Google.. BIG MISTAKE! I googled everything there was to know about Down Syndrome, so I thought. I looked up the distinguished facial features, the severity of learning disabilities, the chances of reproduction, life expectancies, the health risks, and so on. Trust me, after reading all of that I felt like I needed to mourn. No wonder, the doctors said I’m sorry, instead of Congratulations. My child was doomed to fail, or so the internet made me believe. After all of that news, my research was more focused on the reliability of the genetic testing. Surely, these tests make mistakes and are not always accurate, our baby surely doesn’t have such a genetic disorder, which became my focus and prayer.

When Vaughn got home a few days later we went to Applebees to eat and finally just catch up. After discussing the worrisome what ifs, I realized I had not yet shared the gender. For the first time since the phone call, I got excited about this unborn baby again. I was going to be a mom to a little girl. Names started to come up in conversation and thoughts of dresses and bows filled my mind instead of chromosomes and disabilities. From that moment on, my heart and mind started to come together knowing that this will be ok.

The next day we had a doctor’s appointment to discuss our baby’s future. From the very first purple plus, Vaughn and I loved this baby. We knew that nothing would or could ever cause us to want to end this baby’s life, so when that option was even suggested we were shocked. I already had so much guilt feeling sad that my daughter would be “different” that this option completely sickened me. We assured the doctors that was NOT an option and further discussed everything that Google had previously told me. There was still never a “celebratory feeling” when leaving the room, but more of a face of concern and sympathy.

Weeks to come was full of different doctor appointments and ultrasounds. Constantly watching the baby’s health. At 20 weeks, we discovered that our baby girl had a hole in her heart through a fetal echocardiogram. It was just another stress to add to my already crazy emotions. The more I learned about potential health risks of Down Syndrome, the more I prayed my baby didn’t have it. At a risk of sounding like a terrible mother, I would sometimes pray to God that He would just “fix” her and make her “normal” and healthy. At the time, I thought that was the right thing to do.

Early morning on Wednesday, April 23^rd, 2014 my miracle was born. Aspen Ariya Fahrenbruck. As soon as I laid eyes on my surprisingly blonde haired, blue eyed baby girl, I was absolutely in love. I noticed her almond shaped eyes and little flattened nose and knew the diagnosis was true, but had absolutely no desire to mourn anymore. I could finally celebrate this beautiful, perfect life that God gave me.

Looking back, I regret all the time lost mourning over my unborn child. So many hours wasted focused on the daughter I thought I was losing instead of celebrating the daughter I had. All I could focus on was her Down Syndrome prenatal diagnosis that I lost the joy of just focusing on her. I promise I don’t do that now.

Now all of the things I feared about Down Syndrome I have learned to love because they make my sweet Aspen, Aspen!

When I look at Aspen’s almond shaped eyes I don’t see Down Syndrome, I see a sparkle of love and indescribable joy for life.

When I look at her crooked little teeth I don’t see Down Syndrome, I see a smile that could lighten up anyone’s bad day.

When I look at the crease in her palms, I don’t see Down Syndrome I see a tiny little hand reaching up to be held.

When I look at her short neck I don’t see Down Syndrome, I see a little spot of skin to kiss that makes her squeal with laughter.

When I look at her short little legs I don’t see Down Syndrome, I see the cutest little waddle in the world who loves to dance, skip, and jump everywhere she goes.

When I look at her low muscle tone I don’t see Down Syndrome, I see more opportunities to carry her and give her extra snuggles.

When I look at Aspen I don’t see Down Syndrome, I see a gift from God created on purpose for a purpose.

With all of that said, I wish I could meet every single mama with a prenatal Down Syndrome diagnosis. I wish I could let every soon to be mama meet my sweet girl and relieve every “what if” fear. I would tell them that Google searches only tell you about a “life you are losing” and never let you know about all of the wonderful things you gain! I would tell them that your baby may have an extra chromosome, but they still have a God given purpose on this earth; a specific purpose that could only be fulfilled by them! What would happen if they never got the chance to fulfill the specific purpose?

I'm only beginning to see a glimpse of Aspen's purpose in this life, but believe me it's God-sized and I'm not about to stand in the way!

I once used to “mourn” the idea of a world with Down Syndrome and now I mourn a world without it.