Aria’s Down Syndrome Diagnosis

I wanted to share with you guys a little of my journey about finding out about Aria’s Down syndrome and heart defect diagnosis. A majority of what I am sharing, I am using from a conference I spoke at when I was pregnant with Aria. It’s hard to read the words I spoke, now being on the other side and seeing so clearly why God gave her to me and not wanting to change anything about her. But these were my raw, real feelings at the time and I think it’s important to be honest about where I was at and how I made it through all of it.

It was October 2018 and God had been pressing on mine and my husband Tomas’ heart to give Him complete control on how He designed and grew our family. We had recently adopted two babies from foster care, and at this point Mia was 3 and Kai was 1 ½ and they were the best part of our life! We had worked so hard to get to the finalization of their adoption and I had just finished healing and recovering from that journey, when we found out that I was pregnant. We were so excited to add another baby to our family and I was relieved that this journey of pregnancy would be so much less excruciating than the adoption journey. We had already given God complete control of building our family and we were excited to see what He had in store for our future.

A few weeks later, I was at The Balance Culture (my fitness studio) getting ready to take a class and I received a call from my Doctors office. They had done some blood work on the baby and they were calling with the results. The nurse introduced herself and dove right in, the spinal bifida test had come back negative but they were going to need to look into the Down syndrome test further. My heart started pounding. She continued to tell me that the test had come back positive but this didn’t mean the baby had Down syndrome, it just meant she had a higher chance based on what they screen for. I asked her what my chances were, she paused, and had me make an appointment for the next morning. This is when I started to really freak out.

When we hung up, I immediately called Tomas and filled him in. He assured me that everything was going to be OK and that he would meet me at home in an hour to talk about it.

I hopped into the workout class and worked out harder than I probably ever have in my life. The second the class ended, I left the studio, got in my car and drove home.  While I drove I started to cry, I was so overwhelmed and upset and couldn’t even begin to think what all this meant. I pulled into the driveway, sat in the car and stared through the big window in the front of our house. By this time, it was December and the Christmas tree was up. To the side I could see Tomas playing with the kids in the background behind it. I took a minute, wiped my face, took a big deep breath and walked inside.

I opened the door to the kids ran over to me, I looked at Tomas. He had a big smile on his face and he was bringing me Kai to hold.

Being with Tomas for almost 12 years and married for 10, I knew that when we had got off the phone earlier he had gone into full research mode, so immediately I asked him what he had read.

He looked at me with the biggest smile, “I read that families with a child with Down syndrome are happier!”

Tears started to stream down my face, but these were different tears. I was so grateful for the man that God had given me and in that second everything felt OK. Maybe he was right, maybe he wasn’t, but knowing that I was married to the best teammate in the world made me feel like OK maybe we could do this, maybe we’ll survive this.

Morning came quickly and so did the Doctor’s appointment. We got to the office and shortly later the Doctor walked in. He seemed solemn but still his sweet and kind self but you could feel the mood shift, like this was probably going to be one of the harder conversation he was going to have that day.

He began to share that the baby had a 1 in 19 chance of having Down syndrome. This was really high chance for someone my age but still only meant there was a 5% chance. I couldn’t even tell you everything he said after that, I just shut down. My heart was pounding in my stomach and in that moment, I knew we were the “1”, there always has to be a 1, that’s how they get the statistic, and I knew we were it. I just kept thinking “we are the 1 in 19”.

He walked us down the road of what pregnancy, delivery, and having a child with Down syndrome would be like. He told me that abortion is also always an option and that we would get asked about it by Doctors, several times throughout our pregnancy journey. We quickly shut down the conversation knowing it was absolutely not the path for us.

We left the office and went to do more blood work, a test that would confirm if she had Down syndrome with a 99.8% accuracy and I would get the call in a week. We got in the car and I began to cry again. Tomas held me, and said “babe there’s only a 5% chance she has it, if they say there is a 5% chance of rain, it doesn’t rain”. But in this case, I knew it was going to rain.

I spent the next week researching what is was it was like to have a child with Down syndrome. I read books, blogs, and forums trying to grasp what our potential new life could look like. I read about the difficulties but also the rewards and the more I read the better I felt. People with Down syndrome were making huge strides in their capabilities and the limits that were once being placed on them, were being taken away.

I spent most moments praying for God to give me peace. If I was going to walk down this path, I needed Him with me in a way I never did before. I needed Him to give me a Kingdom perspective and show me how to navigate all of this.

A week later I got the call. Tomas had just taken the kids to school and I was in my room getting ready and listening to worship music. The phone rang and I knew exactly who it was when I saw the number. I quickly picked up and started talking with the nurse. She informed me that the test results had come back and the baby tested positive for Down syndrome with 100% clarity. She asked if I had any questions, I didn’t, and we hung up the phone.

I sat on my bed and the worship music started playing on my phone again. I listened to the lyrics and closed my eyes. I didn’t feel shocked or even upset, I felt like I had known the whole time since being given those initial ratios and that God had spent that whole week preparing me.

I left the house and drove to Tomas office to talk to him in person. The second I saw him, I told him the results were positive. He looked at me, smiled, and pulled me in and held me so tight. He began to cry and tell me how blessed we are and what a miracle our little girl was, and how we were chosen and the lucky ones. I knew what he was saying was true and I really believed it, even though it was so hard.

He listed all the things we could do for her and how we were going to make her dreams happen. We were chosen to be her parents and we were going to give her the world. He told me that we would buy a house when she was older, with an apartment in the back for her to live in and maybe she’ll get married and her husband would live there too. Then he stopped, “wait do people with down syndrome get married?” I told him I didn’t know, and he jumped right in with “well if she does get married he has to be freaking awesome”.

He sat there with tears streaming down his face. He kept hugging me, and telling me how excited he was to meet her, and how he just knew she was going to be so cute. It was a conversation I never pictured us having but if we had to have it, this is how I wanted it to go down.

There was no more wresting with God, this was happening but before I was barely able to process the Down syndrome diagnosis, we were given more information regarding her heart. She was diagnosed with a heart condition called AVSD and it would require her to have open heart surgery when she was a couple of months old. This felt so scary and overwhelming to me and I began to feel like I was reaching my limit on what I could handle.

The next few weeks were spent filling in really close family and friends and processing it ourselves. I wish I could say that those weeks were filled with peace and healthy processing but they weren’t. They were filled with tears, anger towards God, and grief. I felt like I continually lived in two places in my mind and my heart. On one hand, I knew that this specific baby inside of me was the one God picked for me. I didn’t really know her but I also really did and I wouldn’t change anything about her, even if it was a Down syndrome diagnosis. I didn’t want to wish her away or even change God’s will for her. On the other hand, I grieved the baby I had pictured us having in the beginning of my pregnancy and the dreams we had for her. I grieved what I pictured our family looking like and Tomas’ and mine life once we were older. I was sad for Mia and Kai and what this could mean for them. I felt confused living in between the two worlds and struggled with how I was going to be able to be the best mom for our little girl.

I constantly felt like a cloud was covering me. This was so unlike me because I can usually talk myself out of anything, find the perspective and move on, to the point where I pride myself on this aspect of my personality. I remember sharing with Tomas that I was terrified that this might be my new normal, that the part of my personality that I had relied on so heavily had died. How was I going to make it through this next season with the inability to be strong, change my perspective, and see the bright side.

The holidays were spent just showing up. I showed up for my kids and tried to make every moment as magical as possible for them. I showed up for my business, taught classes, kept meetings, and kept leading even though I didn’t feel like it. It was hard because I was battling so many thoughts and fighting for my mind.

It was the first service of the new year at Grace City. I can’t remember all the details surrounding the message but I do remember what Andrew said that created a huge shift in my life. He started talking about mourning, and not letting mourning overstay it’s welcome in our life because then it turns into bitterness. That’s exactly what was happening, mourning had stayed too long and it was beginning to change me.

During worship at the end of service, I prayed for God to take to that mourning from me, I was done with it, I wanted to move on to everything He had in store for me that year and mourning wasn’t part of it. As I was praying, I could feel the cloud lift, and a peace that I had been longing for months intervened and for the first time in a long time, and I felt like I could really breathe again. God was moving through me, proving Himself to me, and blatantly showing me that relying on characteristics of my personality wasn’t going to get me through this next season, He was. I walked out of church that day a different person, a freer person.

The next few months of my pregnancy were spent with way more peace, joy and excitement for my baby girl. I had no idea what the future had in store but I knew God had us and that’s all I needed.

Looking back it was so necessary for me to grieve and really process through those emotions, as hard as it was. God showed Himself to me in a new way during that season and I grew. I grew in my faith, in my understanding of how God works, and in my ability to trust God even when I don’t understand. It’s so much better to be on this side but that side got me here, so I am thankful.

Having Aria now and knowing who she is has changed everything for me. The blessing that she is to my life already is undeniable. I’m so thankful God chose me to be her mommy!