Categories
down syndrome

A New Baby

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.

Categories
down syndrome

A Place to Start

Writing has never been my strong suit. In school, English was always my lowest grade. I would always turn in essays that I was proud of, or thought, “surely this time I will get a good grade,” only to be let down with pages scribbled with red notations. I learned to rely heavily on my mom’s stellar editing skills to keep my English grade close to my other subjects.

I love to talk though, and think through ideas with friends, so please bear with me as I set out on my journey to start blogging. I have always been intrigued by the idea, and follow plenty of girls on Instagram who have made their living doing just that. I have brainstormed ideas, even trying brand new hobbies to try to find something I could write about. However, I always end up losing interest or just feeling like I don’t have the time. I have always heard people say, “Find what you are passionate about, and make it your job, then work won’t feel like work.” Now for all of us out there who feel like they don’t have a hard and fast “passion” like making beautiful table scapes or testing millions of beauty products, this can be a defeating sentiment. What is wrong with me that I don’t know what my passion is?! I love problem solving, working with people and learning. All of these things have lead me to a career in Information Technology. I really do enjoy what I do, but to call writing code to monitor systems for anomalies my passion, seems silly. I just don’t feel that way.

The first time I think I truly felt a spark of “passion” or “purpose” was when I became a mother. Not in the ooey-gooey way a lot of women describe meeting their babies for the first time, because that wasn’t my story. I may write another day about the details of my first daughter, Genevieve’s birth, but not today. Long story short, we had a rough entry and the first time I held her, I ooed and awwed and snuggled her up, but my inside was screaming, “Who are you?!” I have since spoke with a few other women that experienced this. Something my mom has always told me is that “expectation – reality = disappointment”. Now, disappointment isn’t the correct term to use here, but the sentiment is the same. My expectations were that I would hold my daughter for the first time and instantly be flooded with Motherly instincts. Music would be playing in my ears and I would instantly fall in love. Reality came crashing in with exhaustion, frustration and fear. I knew I was holding a sweet angel baby that I would take care of so intentionally, but I felt no connection. That separation of my expectations and the reality of that day caused me to be really confused.

I still felt like me.

I still felt like the girl who barely felt old enough to be out of high school, even though I was 25. I still felt like a child myself, and that I would be calling my mom for everything. I didn’t feel like the know-it-all instinctual mom I thought I was going to be. However, in this space is where the feeling of being unprepared lead me to what I would now label as my passion. Becoming a new mom was work for me. I have been around lots of babies so it wasn’t difficulty in learning how to change a diaper or when it is ok to start giving them puréed foods. The work came in having expectations for myself. It came in giving myself grace. It came in tears the first and only time I have clipped my daughter’s finger nails because I got the end of her finger; she cried for less than a minute, while I cried for an hour. The work came in the first nights that she could sleep long enough that when I woke up it felt like I had concrete on my chest because I needed to pump so badly. The work came when I felt like I had poured out all I had, and more was still required.

Becoming a new mom is, without a doubt in my mind, the hardest thing I have ever done. When people say it is the most rewarding thing they are have ever done, it isn’t an exaggeration. I have done well in my career so far, getting promotions before the allotted time span you are supposed to have worked before getting them. I graduated Magna Cum Laude in three years from university when my college preparation courses and testing told me I would struggle through school and not be able to take a full course load. I have had many “measures of success”, but none of them compare to when your child says the word you have been working on for the past several months, or when they take their first step, or when they run to you because you are the only person they want.

That is purpose.

Being Genevieve’s mom has given me more passion than anything I have ever done. While I have more to say in my upcoming posts about many other things that have come into my life in more recent weeks, this is an important place to start. Being a mother, is my greatest calling, my greatest joy, and my greatest accomplishment.