“I am one of those people who had her life planned out at age ten. Become a teacher, get married, have kids. And life pretty much followed. I went to Hope College, became a teacher in Allendale, married Sam, and had two kids – Zoe and Eli. In the summer of 2017, Sam and I decided it was time to add number three to our family. We found out in November that we were expecting. One day in December, I began experiencing severe abdominal pain. I went to the hospital terrified I was having a miscarriage. The ultrasound tech showed me the baby and said, ‘Look at that strong heartbeat!’ My relief was overwhelming. Then she moved the ultrasound wand and said, ‘And you’re about to be a lot busier because here is baby number two with another strong heartbeat!’ I think my jaw hit the floor. Shock and panic were my dominant emotions. How could I possibly have twins? Within a few days though, excitement won. I couldn’t wait to dress my babies in matching outfits and witness that magical bond that twins share. We had a 9-week ultrasound and saw both babies wiggling away with hearts beating right next to each other.
Something that has been common for all my pregnancies is extreme sickness. With this pregnancy it was even worse. I was losing weight quickly, and my doctor was worried. In mid-January, she sent me to the hospital with a diagnosis of Hyperemesis Gravidarum (HG) to get fluids and blood work. After my blood was drawn and a fluid IV started, the ER doctor came in with a portable ultrasound machine and said, ‘Let’s check on those babies just for fun!’ When he got the babies on the monitor, he was dead silent, and my stomach dropped. He stopped and said he was having trouble getting a good look and wanted the ultrasound tech to look. While the tech did the ultrasound, she didn’t speak and kept the screen hidden. It was the longest thirty minutes of my life. I finally asked if she was able to see the heartbeat for both babies. She reluctantly told me that only one baby had a heartbeat and the other had passed away.
The heartbreak I experienced in that moment is something I can’t describe. I felt like I had failed my baby by not being able to keep her safe. I know there are many women who have felt the utter devastation of losing a baby. It is complicated things that I was still pregnant. Trying to grieve the child I had lost while also feel excitement for the baby who survived was incredibly difficult. I felt utterly lost. I clung to the words of hope I found in scripture. ‘The Lord draws near to the broken hearted.’ and ‘Sorrow may last through the night, but joy comes in the morning.’ I was learning that God was there in the midst of my heartbreak, that he was good even then.
I slowly began to see my way out of the depths. I was holding on to finding out our survivor baby’s gender because I needed to feel connected to the baby I still had. We found out we were having a girl, and I slowly began to spend more time feeling excited and less time dwelling on our baby in heaven (we named her Willow).
We had a lot of ultrasounds of our little girl because our OB wanted to make sure that her twin’s death had not compromised her health in any way. At the 21-week ultrasound, the doctor sat me down and said ‘There is nothing to worry about, but we found a bright spot on the baby’s heart. It increases the chances that your baby has Down syndrome by a small amount.’ She wanted to send me to the high-risk doctor for a follow up ultrasound. At that point I felt a bit defeated. Why couldn’t anything with this pregnancy be easy?
Two weeks later we had the follow up ultrasound which showed seven markers for Down syndrome. At that point Sam and I felt pretty certain that our sweet girl was carrying an extra chromosome but decided to have an amnio done just to confirm. It obviously wouldn’t change anything about how much we loved her and how excited we were to meet her, but it would give us time to prepare. The day after the amnio, I sat in a meeting after school. My mind was in a million places and struggled to focus. I knew I probably wouldn’t hear anything until the next day, but my nerves were stretched tight. Halfway through the meeting my phone started to vibrate. I looked at it and felt my stomach bottom out. I quickly ducked out of the meeting, took a deep breath, and answered the phone. Here’s the thing. I knew what he was going to say. I would have been completely shocked if he had said she didn’t have Down syndrome. Still, as prepared as I thought I was to hear those words out loud, they knocked the wind out of me.
‘Mrs. Filcik, I wanted to let you we got the results of the amnio. Your daughter has Down syndrome.’ I don’t remember sitting, but there I was I on the floor in the middle of the hallway with tears running down my cheeks. The doctor asked, ‘Mrs. Filcik are you ok?’ to which I somehow managed to say ‘Yes, I will be. Thank you for calling.’ before hanging up. I don’t know how long I sat on that floor, but I specifically remember crying out to the Lord saying ‘God, she is yours. You made her, and I love her.’ I knew that the sweet girl I was carrying was perfect and I loved her fiercely. But I also knew that with those words, our lives would never be the same. It took me a few days to move past those initial feelings of grief and loss. I sometimes think back on those feelings and feel guilty. But honestly, I’m not sure it’s possible for a mother to get a diagnosis for her child and not have at least some grief associated with it. We all want the best for our children. For them not to struggle. Throughout those tough days, I felt God saying to me ‘Lindsay, I created this child in my image. She is fearfully and wonderfully made. I lovingly knit her together inside of you and purposely added that extra chromosome to every cell in her body. I chose you to be her mother.’ From that point on, I learned everything I could about Down syndrome. I connected with other moms. I was determined to be the best mother I could to my precious girl. Sam and I decided to name her Ivy.
I was going to the high-risk doctor often for ultrasound checks. Having an extra chromosome throughout every cell means that there are a lot of potential health complications. Between 50 and 60 percent of babies born with Down syndrome have some sort of heart defect. There are common digestive tract issues that can happen and require surgery. Often the placenta or umbilical cord will fail earlier because there is an extra chromosome in those as well. There is also a higher risk of stillbirth. I found myself not grieving anymore but filled with anxiety over all of the possible things that could happen to my baby. We had an echocardiogram that ruled out any heart defects which was amazing. However, there was a potential issue with her esophagus that could not be confirmed or ruled out until after she was born. That period of waiting and fearing the unknown was excruciating!
Ivy Joy Marcie was born on July 5th, a little over 4 weeks early. Between her prematurity and the Down syndrome, I was pretty convinced we’d have to deal with a NICU stay. When they laid her on my chest, I fell head over heels in love with her. She looked at me with her tiny almond shaped eyes and I knew my heart would never be the same.
She was so beautiful and so clearly and lovingly created by God. She was my precious Ivy. The NICU team examined her and immediately ruled out the esophagus issue we were concerned about. They also deemed her incredibly healthy and allowed her to go right back to me. I was in disbelief. I had fully expected her to be taken to the NICU. But here I was holding her. She needed nothing. Not only that but she started eating immediately and well which is very often not the case for babies with Down syndrome. I was over the moon.
Since Ivy’s birth, there have been struggles. She was diagnosed with a Congenital Diaphragmatic Hernia that was surgically repaired at 5 months old. She had a GJ Tube placed in the same surgery because she was really struggling with reflux, feeding, and gaining weight. She has faced every obstacle with such a calm and content attitude. She is brave and strong and has taught me to be the same.
None of the past several months were in my plan. Miscarriage was not in my plan. Having a child with special needs was not in my plan. I have felt like I was walking this clear, easy path and I got picked up and tossed in the dirt. But if God had never tossed me off that path, I would have missed so much beauty. Walking where I am now, I have experienced amazing love and support from all around me. Friends, family, church family, acquaintances have all stepped up and have been Jesus to our family. Every meal, card, gift, message, and hug is God reaching out to me. I have been welcomed into a tribe of mothers with kids that have Down syndrome like I was their long-lost family member. I have grown so much closer to the Lord and I know that would never have happened if I hadn’t had to get a little dirty off my planned path.
I get to raise my incredible Ivy who has already taught me so much. She has taught me the value of every single life created by God. She has taught me that we are all so much more alike than different. She has taught me that when things don’t come easy and require time and effort, they are so very much sweeter when you get to experience them. And her sister Willow in heaven has taught me to live with a more heavenly perspective. To cherish every day, I’m given with my loved ones. And that this earth is not my home. A piece of my heart is in heaven where I will get to be someday forever. I have learned that there is a reason why we don’t get to pick the plan for our lives. Given the choice all those months ago, I would have stayed I my straight and easy path. But God had so much more in his plan for me. I have experienced beauty and joy that I would never have associated with miscarriage and Down syndrome.”
This story was submitted to Love What Matters by Lindsay Filcik, 32, of Grand Rapids Michigan. Follow her journey on Instagram here and her blog here. 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.
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