fear – Ben For The Win

It started with a conversation. I told my husband, Cody, that I wanted to have another baby. I said we had to hurry and start trying, because I wanted Gennie to have a little sibling close in age like my sister and I. We agreed, and after trying for just one month, we started talking that we may actually want to wait a bit longer.

After I realized I had been acting like a bit of a lunatic, with a few emotional breakdowns over small things, I decided to take a pregnancy test. We were thrilled! Baby two was on the way. We decided to do the early detection genetic testing, like we had done with our first child, Genevieve. I again waited the two weeks, giddy every day to find out what my results were. Was Gennie going to have a little sister or a little brother? Were we going to have two beautiful baby girls or one of each, a boy and a girl?

I got a call after 5 o’clock one day, but didn’t get to it. I immediately tried to call back, but since it was after hours it went to their answering service. I was so frustrated, I would have to wait almost another 24 hours to get the results. I called again in the morning, and the lady who answered the phone said she would have a nurse call me with my results. As the hours ticked by over the morning, I became more and more impatient and frustrated. How could they be taking this long to let me know if I was having a boy or girl?!

Finally I got the call, the number popped up on my phone and I hastily answered it. The voice on the phone made me freeze. It wasn’t one of the sweet nurses I had talked to before, but it was another voice I recognized. My physician was on the phone. This is the reason it was taking so long, because this was news that should come directly from my physician.

She calmly explained that the results were not normal. She explained that there was an abnormal count for Trisomy 21 in my blood. She told me that my results indicated a 38% chance of a positive result for Down Syndrome. My throat was closed, I just kept saying “ok” because that was all I could get out. The next question she asked me will always ring in my ears.

“Do you want to hear about termination options?”

My mouth, again, unable to really talk just said, “no.” I was being robotic. Just trying not to cry, she quickly assured me that we would work through this pregnancy. We would monitor the baby more closely, but that she was there for me. At this point in the conversation, I just wanted off the phone. My mind was miles away from the gender of my baby. She asked me, “Do you want me to tell you the sex?” I answered yes, and she told me, a baby boy.

I hung up and just wept. What was this? How was my baby not whole? How was he not the perfect, healthy bouncing Gerber baby that every child of mine was going to be? My mind was just racing. In an instance, the image of my two babies, siblings that shared all of their life together was shattered. The image of my life with two babies grown with families of their own seemed all, but impossible. What would this life be, shackled to a child with a disability.

I really am so ashamed of some of the first thoughts that I had about it, but that doesn’t change that they were there. I want to be honest about it, because I have had a hard time finding anything that mirrors the emotions I went through. The past 10 weeks since we found out about our little boy’s possibility of Down Syndrome has been a roller coaster.

We were first met with hope in reading and hearing several other people’s account of getting false positives in the early diagnosis testing. Then we went and did a high risk scan at 16 weeks. The doctor told us that our baby, who we have chosen to name Ben, did not show any of the soft markers for Down Syndrome. He was having a hard time getting a good picture of his heart, so he just wanted to see us back in a few weeks to see his heart better.

We were thrilled!

Surely this was confirmation that our baby was healthy! Something in the pit of my stomach though wouldn’t let me let it go. Now I know that was God’s hand preparing me for the news we would receive at the sonogram we had at 19 and a half weeks. As soon as the picture popped up on the screen, it was obvious. The wall in the middle of Ben’s heart was missing. His heart was sharing blood between the two halves. We still waited for another 30 minutes for the sonographer to finish the scan and then the doctor came in to confirm. Ben would need surgery and this specific heart defect all but confirms that our Ben has Down Syndrome. The only way to be 100% certain is to do an invasive test called an amniocentesis, that we have decided to forego.

I spoke a little bit in my last post about how I first wouldn’t let myself feel it. The first two days, I did feel peace, but I was mistaking that for telling myself I didn’t need to be sad. I am so grateful for a peace that surpassed all understanding, that I know came from the Lord, but I would tell anyone going into this type of testing, “It’s ok to be sad. It’s ok to be disappointed. It doesn’t mean you love your child any less.”

I felt like a broken record for the number of times in those interim 8 weeks, from when we were first told it was a possibility to when we got the confirmation in the sonogram. I said on repeat, “Of course we will love him no matter what, but we are praying he is healthy.” After we got the confirmation it was a few days before I would allow myself to realize that I was sad I was not having a completely healthy child, and that is ok. Just as any parent would be sad for their child to have any other defect, my baby is not whole. Allowing myself the space to feel that has allowed me to accept it. I am still processing and I plan to document my emotions as I walk through this, because I am so desperate to know what others have felt.

This road has been tough, and it is just getting started. I feel like I am standing at the beginning of a trail, and I can only see so far to his birth, and the trail turns off and I have no idea what lies beyond this pregnancy. Every mother experiences this when they become a new mom, but I feel like my fear of what is around the corner is greater, than when I was becoming a mom with my first child.

I will be patient.

I will allow myself to take steps of faith, and reach out when I am not sure. I will learn all that I can, but know that I am not equipped and I have a Father who is there to close the gap where I fall short. I will choose to rest now. I will seek the Lord, as I feel like I already have more than I ever have in my life. I will choose to walk one day at a time. I will focus on today, living each day with my sweet baby girl, and quietly hold my son inside of me where I feel like he is safest.

And for today, that is enough.

Anyone who knows me, knows I am the absolute WORST at keeping secrets. The only exception may be to that is my dad, but as they say “the apple doesn’t fall far from the tree.” For both of us, I believe it comes from an unquenchable thirst for loving life! When my oldest sister had her first baby, making me an aunt, I posted a picture of him to social media less than an hour after he was born. He was here! I was an aunt! I was so bursting with pride over him, I failed to realize I stole the announcement of his birth to the world from his parents. Whoops. Still sorry about that one, Britt.

I just love celebrating. When my brother sends me a new jewelry design he has worked on, I freak out and it takes everything in me not to post it all over my social media, potentially ruining an engagement surprise. My husband and I have been together for 11 years and I don’t think I have ever been able to wait for the actual day to give him a birthday or Christmas present.

Life is short.

I want to soak up every minute of it, and celebrate every tiny win. I often find myself way over excited about something and being surprised that no one else is celebrating the free donuts at work the way I am. It is something I feel like has given me a unique perspective and a way to connect with people that I otherwise may not. Joy can be infectious, and I think everyone could use a little more of it. That is why I can’t contain it.

On the flip side though, I love connecting with people where they do feel comfortable to confide in me. I love listening, and I want to know what is going on in your life. I want people to feel comfortable to share things that they have been holding in and dealing with alone. Jesus calls us to be this. I believe this is what he means when he calls us to be the salt and the light of the earth.

Matthew 5:13-16

13 “You are the salt of the earth, but if salt has lost its taste, how shall its saltiness be restored? It is no longer good for anything except to be thrown out and trampled under people’s feet.

14 “You are the light of the world. A city set on a hill cannot be hidden. 15 Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all in the house. 16 In the same way, let your light shine before others, so that[b] they may see your good works and give glory to your Father who is in heaven.

Salt preserves. Light chases away darkness. I think it is imperative that we check in on each other. There are a lot of campaigns lately for awareness around mental health. I think often times the Christian response to this is to tell people they need Jesus. While this is so true, and having the saving love of Christ in your heart, knowing that He has already paid everything, can be the greatest comfort. The body of Christ is not called to close themselves in a closet and focus internally on what Christ has already done for us. He calls us to enter the world. He calls us to get down in the painful and broken and point to Him.

People are desperate for this connection, hence the obsession with social media. There are various Harvard Business Reviews I will link, talking about how social media interaction causes a positive feeling from the hormone dopamine that keeps bringing people back because it feels good. However, this one talks about how more and more young people don’t feel like they have any meaningful relationships that are outside of their online social network. And finally this article from Psychology Today discussing the need for strong personal relationships for someone to thrive and contributes the most to a person’s happiness.

I have a very specific reason for writing this post, and it feels like I am rambling to get there, but I want the point to be met that I recognize the need for connection. I recognize the need for reaching out. I want you to know dear friend, that you are not alone. I pray desperately that you would reach to someone close to you that you have been debating about opening up to. I pray that their heart will be open to receive it without judgement so you don’t have to fear telling your secret. And to the person reading this that feels whole, I am pleading with you to check on those around you. Preserve what is good in the world from the evil that is attacking it, and be the light that enhances that world and helps chase away the darkness.

I have recently experienced some darkness, and grief. It is not the way I hope to always describe it, but it is the best way I know how to express what I have been feeling. My first reaction is to pretend it isn’t there. To ignore the pain that I feel with it, put on a brave face, and tell everyone who knows that I am ok. I have been so blessed to have people in my life that have drawn it out of me. Family that is willing to just let me cry. Friends who tell me I don’t have to be brave and that they will just listen. I received a text from a friend I have confided in that simply read, “How is your heart today?” A simple message but one that allowed me the space to be honest, it was not a good day, and I let myself admit that. Finally, I have recently connected with a woman going through my same situation a few years ahead of me, and her first message back to me was not to reassure me that everything would be alright. Instead she said she was sorry, and that she knew it was hard and I was experiencing grief.

I know I will be ok.

I know I will get past my current feelings. I know I will come to celebrate what is currently making me sad, but until then, I will allow myself to feel it and I will share this secret. It is not one to hold in alone, but to feel deeply and share.