Have you ever been in such a state of shock that you felt as though your heart stopped beating and you had stopped breathing?
Somehow, the molecules in the air have stopped moving, and in the deepest part of your body, resides an internal scream.
I have to be honest. That is how I felt on the day my daughter was born. You must understand that my 22-year-old brain is vastly different from my now 36-year-old brain. Blame it on my underdeveloped amygdala (the part of the brain that helps control emotions), but I was literally in a state of shock.
At the age of 22, and in my final year of college, I became pregnant. In the beginning, my pregnancy was normal. All of my baby’s measurements were normal, except for a bit of extra amniotic fluid. I figured that she just had more water to swim around in. I passed my Alpha Fetoprotein blood test as well. (This test examines a protein in the blood that is produced by a fetus — these levels can be used to look for congenital issues such as Down syndrome.)
Later on in my pregnancy, and three months before I was to graduate with my bachelor's degree in psychology, I began to develop preeclampsia, so I was put on bed rest. The week of my Comprehensive Exams, I was scheduled for a routine appointment. My cousin drove me and we made a pit stop at Chick-fil-A. After completing my sandwich and Dr. Pepper, I walked in for my routine exam. My awesome nurse proceeded to attach the heart monitor to my now huge belly. She then printed out of copy of my baby’s heartbeat, and then another nurse came in. My doctor then came in to examine me. With a look of concern, he told me, “Your baby’s heart rate is decelerating we need you to go to the hospital immediately for an emergency C-section.”
I remember being afraid and called my mom to meet me. As I lay down, I remember having fear about the C-section, but also excitement about meeting my baby girl. After my C-section, I remember looking at my mom’s face after seeing my baby. She looked really worried. Once I returned to my room from recovery, I was told that my baby had to be rushed to a larger hospital in a neighboring city because her heart had stopped beating three times due to a possible heart defect. Tears begin to flow, but I knew that I needed to be strong for her. Later that evening, I received a call from that hospital with this news:
“Your daughter has Down syndrome. Down syndrome means that she won’t be very smart. It may take her longer to walk and to talk. When she grows up she may be able to work at McDonald’s and push a mop.”
My life changed that day. So many thoughts danced around my head, and my body. I knew that my life would never be the same. I just didn't know how.
If I could tell my 22-year-old-self anything on the day that my daughter was born and diagnosed with Down syndrome, I’d say…
1. Go ahead and scream.
I couldn’t breathe. I felt that a piece of me died that day. My 22-year-old view of my daughter, her future, her wedding, her circle of friends, even college… I felt like all of my hopes for her future were now unattainable. I wanted to scream but I couldn’t because I didn’t have the air or strength to do so.
2. It’s not your fault.
The overwhelming sense of guilt that I felt is unimaginable. I felt like my sin of having a baby out-of-wedlock caused her to have Down syndrome. True enough, young unwed mothers have healthy babies every day, but because I “knew better,” I felt as if God was punishing me. Now that I am older, I know that nothing that a mother does “causes” or “makes” Down syndrome — it’s simply something that happens.
3. There is nothing that you could have done to prevent this.
I kept replaying my pregnancy. I didn’t drink or smoke at all, so I kept trying to remember every over-the-counter drug I had ever taken.
“Maybe it was the Tylenol? I thought it was safe. Maybe it was my asthma inhaler I had to use that one time? I knew I should have toughed it out!”
I replayed these messages all day in my head. My older self would tell me that those messages were false and negative, and that I had done everything I could to ensure that I had a healthy baby.
4. It’s OK to be mad.
I was torn. The love I had for my daughter was (and still is) indescribable. I just wanted to hold her and protect her from any pain. I was also angry. I felt like the opportunity, the chance for normalcy had been robbed from both of us. I would tell my 22-year-old-self that it’s OK to be mad.
5. Your womb is not damaged and you are not cursed.
For years, I felt like less than a woman. I felt like my womb was cursed, almost as if I was incapable of producing anything healthy. In my mind, I would never have any more children.
At 36, I am also the mother of a healthy 2-year-old girl who does not have Down syndrome. After I met my husband and we were married, we decided to have a baby. We both decided to use our beliefs and our faith in God throughout the entire pregnancy. We wanted no genetic testing, as we would love our child no matter what the outcome. (My husband was already crazy about Tayler!) So in 2013, after again having preeclampsia AND gestational diabetes, we delivered a healthy baby girl.
6. It’s OK to grieve.
The diagnosis of any disease, illness or disorder has been said to be similar to the grieving process of death. The Kubler-Ross stages of grief include Denial, Anger, Bargaining, Depression and Acceptance. I experienced each of those emotions over the course of several years. I would tell my 22-year-old self to take time to take care of me, and find a counselor to help me process my grief.
7. This is NOT the end.
After my daughter was born, my OB-GYN came in and gave me an awesome scripture:
Psalms 139:14 “I will praise thee: for I am fearfully and wonderfully made: marvelous are thy works.”
I often wonder if he knows how much those words mean to me. That verse has so many times gotten me through the frequent surgeries and endless doctors' appointments. Through sad times, it has reminded me that my daughter is absolutely beautiful and marvelous. She has a beautiful future ahead of her.
I love her personality. She is sweet, loving and sometimes stubborn. She is a great big sister and has a great sense of humor. I have loved watching her grow.
My life truly changed on the day of my daughter's birth. I wish I knew then what I now know.
If I could tell my 22-year-old self anything, I would say that my daughter’s diagnosis was never a death sentence. It was a destination — a journey toward becoming a stronger mom, a patient wife and a better human being in general.