birth, Down syndrome, faith, God, grief, Ivy Joy, labor, loss, miscarriage, prenatal diagnosis, the lucky few, tribe, twin loss, Willow Hope

My Story

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. Last summer, 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 to see what was going on. The ultrasound tech showed me the baby and said look at that strong heart beat. I was so relieved. Then she moved the ultrasound wand and said ‘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.

twins announcement

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 to get fluids and some tests run. The doctor there did an ultrasound ‘just for fun’ he said. When he got the babies on the monitor I immediately felt like something wasn’t quite right. He stopped and said he was having trouble getting a good look and wanted the ultrasound tech to look. When she did the ultrasound, I could not see the screen. She didn’t say anything for thirty minutes. 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 here who have felt the utter devastation of losing a baby. It 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. During that time of grief, I immersed myself in God’s word more than I ever had. I clung to the words of hope I found there. “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 the doctor 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 told me that she saw a bright spot on the baby’s heart. She said it wasn’t anything to be concerned about but that it was a marker for Down syndrome. She wanted to send me to the high risk doctor for a follow up ultrasound. At that point I felt in a bit of a fog. 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 me time to prepare.

Even though I was completely expecting a positive result, when I received the phone call the day after the test confirming that she did have an extra 21st chromosome which is known as Down syndrome I cried. I grieved. There really isn’t any other way to say it. I loved her so fiercely, but there was a feeling of loss. Loss of the plan I had had. Then guilt for the feelings I was having because this child inside me was very much alive and I knew that she was created by my heavenly father. I wish I could go back and talk to myself at that time. But I think that those feelings needed to happen so that I could move forward. I remember reading Psalm 139 and praying with tears rolling down my cheeks. At that moment, 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.” 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.

extra ordinary girl

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. I really clung to Isaiah 43: “But now, this is what the Lord says— he who created you, Jacob, he who formed you, Israel: “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior.”

During this time I began to really think about how I was praying. I have always spent so much of my time praying for outcomes. But that is praying for my plan not necessarily his. God knows every desire of my heart and he knows the outcomes that I would choose. When we found out about the possibility that Ivy had down syndrome I realized I couldn’t pray that she didn’t have it because that is something that was decided before I even knew she was growing inside of me. I started to realize that instead of praying for outcomes I needed to pray for God to give me the peace to accept the outcome, the strength to make it through whatever happened, the faith to trust him and his plan.

Ivy 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 was incredibly 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. Ivy is now twelve weeks old. She continues to be my tiny miracle. I look at her daily and see the Lord’s fingerprint on her.

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 path and I got picked up and tossed in the dirt. But God’s plan for me is higher than that easy, straight path. Because if he 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 so 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.

If you were here at Lifestream around Christmas last year, you might remember the service where we were asked to write down our big prayer requests and put them inside an ornament. That service occured after I had found out I was pregnant but before I knew we were having twins. I immediately wrote down was that my sister-in-law would get pregnant. They have struggled with infertility for over five years, and I just desperately wanted that for them. Right before I put my paper in the ornament, I unfolded it and wrote ‘God, please give us a healthy baby.’ In the past months I have thought about that ornament and those prayer requests. Miraculously, my sister-in-law is pregnant. What about my other request? Was that too much to ask? It isn’t that I’ve been angry at God as much as I’ve just felt unheard maybe? As I was writing down my story of the past year a revelation hit me like a ton of bricks. I prayed for a healthy baby. Ivy, having down syndrome had an incredibly high risk of having multiple health complications. Add to that the fact that she was over four weeks early and that risk was even higher. But there was nothing. She has been healthy and strong since she started growing inside me. God answered my prayer. However because I was focusing on the surrounding circumstances, I was missing that. He is so good and so faithful. He has worked every single part of this past year for good. I know that as I walk forward on this path that he has set before me, that he is there.

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