‘I started to panic. I told my friend we were having this child regardless. ‘Would you really?,’ she responded.’: Mom grateful for taking the ‘scenic route’ with son diagnosed with Down syndrome

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“I didn’t want to have kids. At least that’s what I would tell people who asked before my husband and I had even gotten married. Part of me just enjoyed seeing the looks on people’s faces when I told them we didn’t have plans to have kids. The other part of me knew this was a complete lie. From the time I was a young kid I always said I wanted to have enough kids to start a basketball team.

However, as my husband and I started having conversations about having children, I couldn’t shake this pit that I had in the bottom of my stomach. Reality started to set in that having children came with a lot of unknowns.

Courtesy of Tamara Schroeder

I quickly brushed these thoughts aside when I found out we were expecting our first child. I only prayed for two things: That the baby was born healthy and that the baby would be a boy.

I couldn’t wait until the 20-week mark to find out the sex of our baby so we opted to do a Non-Invasive Prenatal Test. At the time, I only heard that this test would tell us the sex of our baby. While I knew that the test also looked for some health factors of the baby, in my mind I was young and healthy and there was absolutely no reason to worry about anything.

Courtesy of Tamara Schroeder

We were heading to New York for Thanksgiving around the time we should be expecting the results of the test. At this time, my parents still didn’t know I was pregnant, so we planned on telling them and letting them be the first to know the baby’s sex.

When we made it to New York I remember obsessively checking the testing company’s website hoping to see my results, but they still hadn’t been posted.

After telling my parents we were expecting, we shared the news with a group of my friends. During this get together, I told one of my friends about taking the prenatal test and she said, ‘Don’t worry, everything is going to be fine.’ I wasn’t sure why she said this because I wasn’t worried, but as soon as she said it, that pit in my stomach came back. I don’t know what triggered it, but in that moment, I knew something was wrong.

Later that day my husband and I took a walk with another one of my friends and I started to unload some of the panic that had built up. As the conversation went back and forth, I explained to her that it didn’t matter to me what the results were, we would be having this child regardless. How my friend responded made that pit in my stomach even more hollow. ‘Would you really?,’ she responded.

At that moment I wasn’t sure I was telling the truth. Was I saying this because it was what I should say? Was I prepared for what the results might divulge? Was I ready for the emotional toll a potential diagnosis would bring? A million questions ran through my mind.

Courtesy of Tamara Schroeder

The following day my husband and brother-in-law decided to take a hike in an area where there was very little cell phone service. When we made it back to the car I received a voicemail from my doctor stating that my test results were in and to call her back when I had a moment.

The message was pretty benign, but I knew something was very wrong. When I tried to call back, I was informed that I had missed her for the day so I would have to wait until the next day to hear back from her.

I received a call from an Arizona number around 9 p.m. the next day while we were out at a dinner party. The host of the party urged me to take it and when I picked up the phone, it was my doctor. I gestured to my husband as we made our exit to another room.

Honestly, the next 5 minutes are a bit of a blur, but what I do recall was the beginning and the end of the conversation. My doctor started off by explaining that the non-invasive prenatal test is considered a screening, but there were some concerns about my test. She continued, ‘Your baby tested positive for trisomy 21. Trisomy 21 is the medical term for Down syndrome.’

Her words cut like daggers. My chest suddenly felt heavy and the room began to spin. I remember chiming in with a question or two as she started to explain the test in further detail. Towards the end she asked, ‘Would you like to know what you’re having?’ I remember thinking that I really didn’t want to hear much else at this point, but we said yes. ‘You’re going to have a boy. You’re going to have a beautiful baby boy.’

After the phone call, my husband and I embraced as I cried into his shoulder. We didn’t speak until we came up with an early exit strategy from our dinner party. We lied to our friends and told them that the doctor thinks there could be something wrong with the baby’s heart, but we will monitor it closely. We hadn’t had any time to digest the news that our child may be born with Down syndrome so we weren’t about to share it at the dinner table.

After we left the dinner party, we both agree we had the absolute worst night of our lives. We both cried off and on into the wee hours of the night. I kept questioning why this was happening to us. I had done everything right up to this point, I just wanted the healthy baby I expected.

The next few months were some of my darkest days. It was hard to actually enjoy my pregnancy. Every doctor visit came with anxiety and fear. I thought for sure we were going to lose him. Every cramp or pain sent me on a spiral.

We opted out of doing any further testing. This baby was our son. We heard his heartbeat. I felt him kick and move. We wanted him more than we wanted anything, and all of our doctors supported this decision. No one ever suggested we end the pregnancy, nor was it offered as an option. Our experiences with our medical providers were mostly positive, with the exception of one specialist that just had bad bedside manner.

Slowly but surely, the fear turned into hope as we progressed further into our pregnancy. We started receiving good news at all of our visits until I was around 34 weeks pregnant.

We learned that my amniotic fluid was very low, so I was hospitalized immediately. The next few days consisted of testing and resting. Eventually, everything went back to normal but on the day I was to be discharged I told one of the specialists that I was concerned that I didn’t feel him moving much, although all of the tests proved he was no longer in distress. The specialists agreed that this was concerning and decided to keep me one more day.

The next morning we found out our baby boy had restricted growth and was in complete distress so they immediately prepped me for an emergency C-Section as labor would prove to be too stressful for the baby.

It’s important to know that I had done everything in my power during this pregnancy to avoid having a C-Section. I have metal rods in my back and the placement of the rods could make childbirth difficult, so I went to physical therapy for my whole pregnancy to prepare myself.

My main reason for not wanting a C-Section is because I can’t get an epidural because of the metal rods in my back. So in order to have a successful C-Section I would have to go under general anesthesia. This meant that my husband would not be in the room with me and that I would not be awake when my child was born.

After learning that I was going to have to have an emergency C-Section, I remember crying so hard that I wouldn’t be able to see my baby until after they let me leave the recovery room. At this point, Down syndrome was so far from my mind.

Greyson entered this world at 4lbs 8oz, just over 5 weeks early. I saw him for the first time through a photo my husband brought to me while I was in recovery. He was the most beautiful baby I had ever seen. ‘Is he ok?’ I first asked my husband. ‘Does he have Down syndrome?,’ I asked next.

He was indeed ok, and we didn’t know if he had Down syndrome or not, they would need to run tests.

Courtesy of Tamara Schroeder

Greyson was a fighter from the beginning. His lungs were strong enough to be removed from oxygen less than 24 hours after he was born. He ended up only needing 4 days in the NICU before they allowed us to take him home. In fact, Greyson was discharged before I was!

Courtesy of Tamara Schroeder

We didn’t learn if Greyson had Down syndrome or not until a week after he was born. I was sitting on the couch with Greyson in my lap when I received a call from someone that was not our doctor from Greyson’s pediatrician’s office. She informed me that Greyson’s FISH test results did in fact indicate that he had Down syndrome.

I was home alone, and I completely broke down after this phone call. A part of me believed that he didn’t have it for that week. Maybe a part of me just wished he didn’t have it. It felt like receiving the news for the first time again.

Courtesy of Tamara Schroeder

My husband entered shortly after and I informed him of the conversation.

‘Look at Greyson,’ he told me. ‘Think of how hard he fought to be here. He is the best thing to ever happen to us, and we have this under control.’

He reminded me that life might be a little different than what I thought it would be, but as long as we all had each other, we would live the best life – and I believed him.

Courtesy of Tamara Schroeder
Miss Mae Photography

Fast Forward to today and Greyson is a very healthy and happy 2-year-old. While he may be on his own timeline with some of his milestones, he is very much a typical toddler. He has brought so much joy into our family. He is loved beyond belief and we are surround by the most supportive family and friends. I have always said and will continue to say that Greyson has taught us far more about life and ourselves than we will ever teach him.

Courtesy of Tamara Schroeder
Miss Mae Photography

Our lives really aren’t that much different than a family with neurotypical children. We may have more doctors’ appointments and juggling therapies can sometimes be a challenge, but I’m a firm believer that we all have challenges to overcome; that’s just life. I’m so grateful for the journey that we’re on because we’re taking the scenic route and our tour guide just happens to have an extra chromosome. What could be better than that?”

Miss Mae Photography
Courtesy of Tamara Schroeder
Miss Mae Photography
Miss Mae Photography

This story was submitted to Love What Matters by Tamara Schroeder of Phoenix, Arizona. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

Read more inspiring stories of kids with Down syndrome:

‘The subject line read, ‘Down Syndrome Baby.’ My heart skipped a beat. That very morning a precious baby boy was born.’: Cancer survivor adopts ‘special gift’ son with Down syndrome after infertility from endometriosis

‘I’m 25 years old and this is my first baby. The doctor showed us the ultrasound, and I could barely look. I couldn’t even look at my husband. I felt paralyzed.’

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