We received Leo’s diagnosis in my first trimester. I remember going into the 12 week screening test with my mother, my one year old daughter, and my mother-in-law. To me, this sonogram was just a check up on the baby. The basics: the heart and the brain. It never occurred to me that this was when they checked for markers for genetic disorders. The only thing that mattered to me going into that visit was to see my baby move. And he did.
Leo was moving, sucking his finger, and squirming around in my belly. My eyes teared as I stared at my baby, wondering whether it was a boy or girl. The tech finished and told us she was done and was going to go get the doctor. This was all routine stuff that had happened with my first child. A few moments later the tech came back in and said that the doctor wanted her to do a vaginal ultrasound. This was when the first alarm went off in my head. I told my mom to take my daughter home because she was beginning to get antsy and it was getting close to her nap time.
In all honesty I wanted my mom to stay there with me and hold my hand just in case, but I kept insisting she take my daughter home.
I asked to go pee before they shoved something near my bladder. In the bathroom I remember I kept praying to God to please let everything be ok. I told God that I couldn’t handle if something was off with my baby. I asked my mother in law to wait outside while they did the vaginal sonogram. When the tech finished, she left again to get the doctor. I kept saying to myself that nothing was wrong. I had seen the baby move and he looked perfectly beautiful and strong. When the doctor came in I saw her face. It was a serious face. She asked me if I was alone. At that moment I wanted to cry. It still had not occurred to me that Trisomy 21 was one of the many things she could tell me my baby had, but I knew she was going to give me “bad” news. I told her I was with my mother in law, but that she could wait outside. The doctor and the tech closed the door behind them and I caught a glimpse of my mother-in-law’s face. She knew. We both knew something was off.
I can’t remember exactly what the doctor said next, but it was something along the lines of, “Unfortunately I see something here that could be a problem.” I wanted to disappear. I’ve never felt so alone in my life. I kept my eyes wide open, scared that if I blinked I would begin crying. I wanted to be strong and I thought that meant not crying. She went on to explain the possibilities of what my baby could have. Then she gave me options. Invasive testing to determine 100% if my baby had a chromosome abnormality, termination, or blood work that would give us results that were 99% accurate.
The only option to me was the blood work. I called my husband to tell him what was going on. He was working and couldn’t come to the sonogram. He agreed that was our only option. He then said, “It doesn’t matter what the tests say. We will love this baby no matter what.” I loved him for saying that, but I was still scared. So much so that when they went to go take out blood, they couldn’t because I’m pretty sure the blood running through my veins stopped for that moment in my life. I went outside with my mother-in-law and as she tried to give me reassuring words I soaked in the sun. She said that she was sure nothing was wrong and that it was probably a mistake. She even went on to joke that she thought it was a boy because boys always give mothers the hardest time.
I spent two weeks waiting for the result trying to convince God that I wouldn’t be able to handle a baby with Trisomy 21 or any other disability. I was even foolish enough to try and make deals with him.
God knew better.
The two weeks went by very slowly. I went back and forth thinking whether the test would come back positive. Finally, after two weeks, I got the call to come in to see the doctor. She hadn’t seen the papers yet, but wanted to meet face to face regardless. My husband was interviewing for residency when I found out. Fortunately, my mother was able to make it with me. I could tell she was trying to be strong, but I knew that hearing the diagnosis was just as hard for her to hear as it was for me. In front of the doctor and for the rest of that day I tried very hard to stay strong and positive.
I kept repeating to myself that this was too small of a chance that happened to be considered a coincidence. God, for whatever reason, was placing this baby in our life. Perhaps to be better people? Or to experience being loved in a way that many people do not get to experience?
Dad’s attitude from the beginning made me love him even more. Even before we knew for sure that Leonardo would have DS, he said that no matter what the tests showed, this baby would be a beautiful blessing and would change our lives for the better. He told me that he had always heard wonderful things about people with Down Syndrome and their families. When he found out, he re-affirmed this thought. He said, “That’s my boy!” He was excited for this new journey we would go on together.
I wish I shared his strong positive view from the beginning. I was so scared, mainly because I didn’t know. I had never really met anyone or heard any stories of someone with Down Syndrome. The night after the diagnosis I had so many concerns. The main concerns were whether I would be the mother that my two children deserve. Whether Leo’s older sister would have to grow up faster than most kids because of this diagnosis. Whether I would push Leo hard enough to reach his maximum potential.
I have thought over and over again whether it would have been better to find out when Leo was born. I have come to the conclusion that, like many things in life, there is no definitive answer. I can see the pros and cons for both sides. It was nice to find out before Leo was born because it gave me a chance to mentally and emotionally prepare. I was able to educate myself and talk to other moms who have kids with Down Syndrome without having to worry about taking care of a newborn and a toddler. On the other hand, I’m sure it would have been easier to accept the diagnosis holding on to my sweet little boy while staring at his perfectly beautiful face.
Since the day we found out, I have learned so many new things. My perception of what it means for someone to
have Down Syndrome has changed completely.
I will never be able to explain in words how blessed I am to have such a wonderful support system. Our family has welcomed Leo into their lives even before he was born. Yes, I’m sure they were just as in shock as we were to hear the diagnosis, but despite that they have shown their unconditional love for our growing family. I have also learned to lean on my husband without feeling embarrassed or weak. We have found that when I am nervous or scared he seems to be calm and when he feels nervous or scared I am the one who is not worried.
For example, a few weeks after receiving the diagnosis, I told my husband that I was sad that Leo would not be able to have a normal life like any other regular boy. He might not get married, or have children, or live on his own. The day that other mothers fear, when their boys leave them and begin their own independent life, I wished for.
My husband stopped me and reminded me that Leo could achieve all those things. It might take him longer, but it was a possibility. He reminded me that our son would also be able to achieve things that other “normal” boys might never experience in their lives. Of course, I still have some feelings of doubt, nervousness, and fear of the unknown, but they are very similar to the feelings I have with my daughter. They are feelings most parents have. It is part of being human. The important thing is to remember to keep looking up at all the beautiful things life gives you. My baby is now 8 months old and it is impossible to think of my life without him in it just the way he is.
My name is Lisi and I am 26 years old. My degree is in Industrial Engineering, but my real job is being a mom to two of the sweetest babies. My family is like the one from ‘My Big Fat Greek Wedding’ only Latin instead of Greek so my chromosomally enhanced Leo has been lucky to have so many people who have loved him even before he was born. Follow our journey on Instagram @ourextraluckyworld
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