‘The results came back 90% positive.’ My world crumbled. This wasn’t our plan. This wasn’t how we envisioned our family.’: Mom shares Down syndrome acceptance journey, ‘We’re LUCKY’

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“One year ago, on August 1, 2020, our world was rocked. And when I say rocked, I should say violently shook. One year ago, we received the results of our second blood test. Up until that moment, I honestly thought everything would be fine. We had done the quad screen at 16 weeks, just like we had with the other two. We wanted it done in case anything medically was wrong we needed to be aware of. We wanted to know and be prepared for it (never did I think it would actually come full circle). I thought the results were a false positive. I had friends who had false positive results and everything checked out okay.

We had an ultrasound the day after our quad screen results, and the doctor did not see any of the markings for Down syndrome. But for whatever reason, he highly encouraged us to head to Sioux Falls for a level-two ultrasound and another blood test. We debated if it was necessary. After talking with some family and friends, we went. That ultrasound was also good. No markings. They asked about an amniocentesis. At that point, it seemed too invasive for me. If we had seen anything on the ultrasound, then yes. But we didn’t. So, we opted for another blood screen which specifically looked for extra pieces of the 21st chromosome.

Courtesy of Shauna Remily

It was a Thursday and I knew the results were probably coming that day. I had a house full of daycare kiddos. They were coloring at the table in the daycare and I was in the kitchen getting lunch ready. Then the phone rang. It was our genetic counselor. ‘We received the results for the blood screen. And they came back positive.’ I said, ‘Okay, but that doesn’t necessarily mean our baby has Down syndrome, right? It just means something is going on.’ (I did not have a clear understanding of the blood test. I thought I did, but did not.) She said, ‘No, Shauna. That was the quad screen. Remember, this was specifically looking for an extra chromosome. And it was positive. It came back at 90%.’ I said, ‘You mean there is a 90% chance our baby has Down syndrome?’

‘Yes.’ And my world felt like it crumbled. I basically collapsed onto the kitchen counter and started crying.  The genetic counselor was trying to console me and also talk about the next steps. I didn’t hear a thing she said. I told her I’d need to call her back. I hung up the phone and I honestly don’t really remember those next few minutes. One of the kids came up and asked me what was wrong (bless her heart). And I said, ‘Nothing, I’m just a little sad.’ I called my mom, and when she picked up I could hardly talk. She came over right away. When she got here, she just held me. We hugged for a really long time. She said, ‘Shauna, you are not in this alone. You are surrounded by family who will all love this baby so much. They will be there for all of you. What a lucky little baby to be born into our family.’

I called the daycare moms and asked if they could come to pick up their kids. And then I called Zach. He knew right away by the way I sounded it came back positive. He and my dad were in a neighboring town playing in a golf tournament. They immediately came home. My sister came over and we all sat in the living room, not really knowing what to say. When Zach got home, we hugged and I cried and we hugged some more. This was not our plan. This is not what we had envisioned for the baby who would complete our family. One year ago started the hardest months of our lives. I would not wish those days on anybody. ‘How are we going to do this financially? How am I going to raise a baby with special needs? How are our other two kids going to handle this? Will they feel left out because so much of our attention will need to be on the baby? What do we do when the baby turns 18? What if our baby has a heart defect?’ Question after question after question. So much uncertainty.

Courtesy of Shauna Remily
Courtesy of Shauna Remily

During this time, Zach also found out the company he worked for was going to be sold. There were several ways this could play out, from him actually being able to buy into the company and be part-owner of the new restructured portion, all the way to losing his job. There was no way of knowing which one of those it would be until it happened. In the meantime, we tried to figure out how to do this four different ways. All of our health insurance and benefits were through his job. We knew we would have a baby with special needs, who could potentially need surgery, be in the NICU, and we could lose our health insurance. Great. Zach and I both dealt with the diagnosis differently, but we both hit some pretty dark times. Was this easy on a marriage? No. Was there a reason he and I ended up together? Absolutely, yes.

Courtesy of Shauna Remily

I have debated writing this post for a long time. These were some of our darkest moments, and do I really want the world to know? I always keep going back to the nights I lay in bed, trying not to completely lose it and ended up on my phone looking at Instagram or blog posts from other moms and families who have children with Down syndrome. And I always felt better. The moms described exactly how I was feeling. I realized even though some days will be very difficult, yes, I can do this. I can be the mom my kids need me to be.

Courtesy of Shauna Remily

I write this in case another mom who just got a prenatal diagnosis is lying in bed, trying to wrap her mind around having a baby with Down syndrome. I write this to tell you yes, you will grieve for the life you thought your child would live. Yes, you will wonder why this happened to you and your family and your baby. Yes, you will wonder if you did something in your past to make you deserve this. And all those thoughts are okay. You need to go through all the feelings and emotions. Because that’s how you get to the other side. Where I am today. Today, life is good. Zach just started his own company and we are so excited. He and I are great. We made it through those dark times and are stronger because of it. We are LUCKY to have Lainey in our lives.

Courtesy of Shauna Remily

I remember reading how, ‘You are now in the LUCKY FEW group,’ when we got her diagnosis and wondering how that is possible. I totally get it now. She is exactly what our family needed. She is the perfect little girl to complete our family. I see the purest form of love between Landry and Cohen when they are with her. They adore her. Landry told me, ‘Lainey is the cutest baby I know,’ the other day. They will learn so much from her. We all will. She has completely changed me as a person and a mama. I have a completely different perspective on things I don’t think you get unless you have been told your baby is going to be born with special needs. And for that, I am thankful.

Courtesy of Shauna Remily

There are so many other situations out there that can be hard. I have no idea what it feels like to be told my cancer is back, or my soldier is not coming home, or there is no longer a heartbeat (sometimes for the umpteenth time), or my loved one is gone and never coming back. I have no idea, and I will never pretend to know. But everyone has a story, and this is mine. I hope if you are someone who has received a prenatal diagnosis, you find this, read it, and find comfort in it.”

Andrea Marie Photography

This story was submitted to Love What Matters by Shauna Remily of Faulkton, South Dakota. You can follow their journey on Instagram and blog. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful perspectives from special needs moms:

‘There’s a 92% chance.’ I had NO IDEA if we could handle it. But when we saw his almond-shaped eyes, our hearts were stolen.’: Mom births son with Down syndrome, ‘We are truly blessed’

‘She started with, ‘So the good news is…’ My heart sunk. When they took her away we were a mess.’: Baby with Down syndrome diagnosed with congenital heart failure, ‘She is a miracle’

‘My heart dropped. WHAT? ‘You have to tell me now!’ I will never look at this photo and not remember.’ Mom receives fetal Down syndrome diagnosis,’I’m so blessed to be on this ‘wheel of life’

‘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

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