“It´s positive for Down Syndrome…”
“What do you want to do?”
I will never forget those words. Those are the words that kick-started my life. The words that turned everything on its head; that broke me down into a million pieces and then, build me back up into the person I am today.
When my husband and I found out I was pregnant with our first child, I was over the moon. You see, my husband is Danish-American and I am Spanish but have spent the majority of my life in Turkey (my family still lives there). We always joke around that we come from different worlds. We have fought hard for us as a couple, overcoming odds of long-distance, going beyond cultural differences, while finding a happy medium between each other’s international aspirations. Ten years after starting our love story, we were expecting our first child. I was ecstatic.
But life had something in store for us. Right before the end of my first trimester, I woke up one morning to discover I was covered in blood. My world came crashing down. We rushed to the hospital where I was told the baby was ok but that I was at high risk of miscarriage and put on bed rest. Thankfully, it was only a scare. Yet, two weeks later, at my 12-week check-up, when the doctor told us that I had high levels of a particular hormone sometimes linked to chromosomal disorders, I was desperate to know more.
We decided on prenatal testing to obtain as much information as possible and especially, to help me relax after those two unreal weeks. I did the blood work, and the lab sent the samples for testing. A week later, I got a call, “Tests are inconclusive. It happens in a very small percentage of samples (1-2%). We need to do it again.” Two weeks later, I got the same call and same results; inconclusive. My doctors kept telling me to stay calm, highlighting that I was having a very healthy, normal, low-risk pregnancy.
In the meantime, we found out we were having a son- Frederik. We have had his name picked out for years. We walked out of that appointment in a cloud. I started to forget about the horrific two weeks and was in a constant daydream my son, his future and our life as a family of three. As the lab wasn´t going to return our money, we decided to just give it a final try- third time is the charm, ¿right?
I got the call from the supervisor two weeks later. The test had come back positive for several disorders, the voice on the other side of the phone explained. “Your doctor will call you immediately with further information.” I felt dizzy, weak and sick to my stomach. It was hard to breathe, “This has to be a nightmare,” I thought to myself. My husband was outside with a friend. I called him as calmly as I could, trying to keep it together. But when he came in, nothing in the world could´ve helped me keep my composure. I broke down.
“There is something wrong with Frederik!” I said in between desperate cries “We have to wait for the doctors´ call.”
The next 10 minutes seemed like an eternity but finally, my doctor called with one main message: “There is no possible way that these conditions can co-exist. There is clearly some false positive. It happens. I recommend an amniocentesis if you want to know for certain.”
The next day, I closed my eyes, feeling the side of my belly where Frederik was, as the doctor stuck a ridiculously large needle on the other side. I spoke to Frederik in my mind during those nerve wrecking moments, concentrating solely on telling him how much I loved him.
Amnio done, I was sent home on bed rest for 24 hours to wait for results.
“It´s positive for Down Syndrome…What do you want to do?” Two days later, we went back into the doctors´ office to hear those words. I only remember bits of what happened next. I remember my heart sinking. I remember mumbling, “What do you mean?” I am not sure if I was trying to process the Down Syndrome or the part related to options.
“You have two options. Spanish law allows for termination of the pregnancy in these circumstances up to 22 weeks. You are 20 weeks, so you could choose this option. You can also choose to continue the pregnancy.”
That explanation hit me even harder. I started to sob uncontrollably. The only thing I could utter in a shaky voice was, “But he is inside me, I feel him” before I started to cry uncontrollably.
“Come back on Monday. Take the weekend to decide.”
The next thing I remember is being in the parking lot of the hospital, embracing my husband in a desperate hug while crying hysterically. I could barely stand on my own two feet, I remember he had to support me so I wouldn´t collapse to the ground.
That day- Friday, August 19th, 2015- was one of the worst days of my life. We went home and all I remember is crying, crying and more crying. I felt a deep sadness; deeper than I have ever felt before rocking me to my core. I remember my husband talking to his family over the phone, crying over the news, but I didn´t really know who he was talking to or what he was saying. I was in another world, busy obsessing with the internet, watching videos, reading about Down Syndrome, and crying non-stop.
I went from excitedly planning the languages my baby was going to speak, to questioning whether he would be able to even talk. I went from thinking about his education to doubt if he had any kind of future or whether he would be able to read. I thought a lot of things; my mind was racing uncontrollably with fear. Overall, I just remember feeling emotional pain; heart-wrenching internal pain. Today, it astonishes me to think about all the thoughts that went through my head, but my ignorance at that point made me picture a life-long dependent child-like adult with very little hope for any type of future.
For the rest of the day, we didn´t talk about what the doctor had told us. We didn´t even think that there were options. We actually didn´t really talk, just cried together.
That night, I cried myself to sleep, exhausted and hopeless. I had the worst, and best, dream ever. Worst because it was the scariest thing I have dreamt in my life and best because it made it clear in my head what the next step was. I saw my sons´ face. I talked to him in my dream telling him how much I loved him. Then all of the sudden, he started panicking and he started to drift away. I tried to hold him to prevent him from disappearing into the distance, but I couldn´t. He disappeared into the darkness. I woke up in a panic.
The next day, as we were having lunch, I told my husband, “I want the doctors to check Frederik out in every detail possible. I want to know everything we can about his health and his body. I want to prepare all I can for him. But, if he is able to live outside of me, there is no doubt in my mind.” My husband looked at me, smiled and said, “Me too.” And then, we both felt a lot better. By no means was the crying and the pain over, but we knew what our next step was and most importantly, we knew there was no need for a discussion on our options; we undoubtedly chose Frederik.
What followed were numerous sonograms, echocardiograms, check-ups by multiple professionals together. What followed were months of reading, understanding, of getting to know what a third copy of chromosome 21 meant. Through time, I went from crying myself to sleep, to being able to say my son has Down Syndrome without breaking into a million pieces. I went from feeling sadder than I have every felt before in my life, to being happy and excited about my pregnancy all over again. It took time, effort, gathering knowledge and becoming less ignorant, but I got there.
Once I had wrapped my head around it, I felt I was on the road towards acceptance. But that doesn´t mean that the months following the diagnosis and before Frederik actually arrived, didn´t have hard times. I went through days where I was content and hopeful again and then something would happen that would shatter me back into pieces. For example, towards the end of my pregnancy, I attended a class on health and care of children with Down Syndrome (ages 0-3) organized by our local association. The workshop was very useful. But as parents asked specific questions from angles I hadn´t thought about, I started to lose it. My mind was blown, I was overwhelmed. Sadness flooded again, crying came back and I couldn´t stop questioning whether I could really do this.
That takes me to January 8th 2016 08:30 a.m. when we walked into the hospital for my scheduled C-section (Frederik was breech). I was wheeled into the OR 2 hours later, as my husband paced up and down the hallway outside. 15 minutes later I heard the doctor say, “I see a butt!” and in what seemed like hours (but in reality it was a few minutes), Frederik was born.
They took him away to the room next door to analyze him and then, finally, I heard him; he had the sweetest cry. They had to give me some drugs to calm me down because my heart-rate shot up so much. Several minutes later, as I was still tied to the operating table and they were closing me up, a sweet nurse came up to me and said, “He is perfect. He is fine. He is with your husband, waiting for you.”
As soon as I was wheeled into my room, I saw him. He was so small. He was so perfect. All those months of crying, of worrying, of doubting whether he would be ok, whether we would be happy; all vanished. Disappeared. Holding him for the very first time, kissing him, seeing his face up close were magical moments I will carry in my heart always. Every mother treasures those unique moments, but when you go through such emotional turmoil, the moment multiplies exponentially. He was so much more than I could have ever imagined.
Frederik turned 16 months a few days ago. He is a tall blondie, just like his dad, with a little bit of sass, just like his mom, and a laugh that penetrates straight into your heart. He loves hands and faces, swinging, eating, and cuddling. He will sit through entire episodes of Baby Signing Time almost without breathing because he gets so into it. He is the most emotionally in-tune baby I have ever met and a clever little cookie. He is learning where his nose is and is obsessed with cows, lions, and ducks. We are so proud of how far he has come, how hard he works to develop and advance. We are proud of every bone, every muscle and every chromosome in his body; including that extra 21st chromosome.
Our life is happy; more amazing than I could have ever pictured it. But, there are also challenging days. It is not necessarily specific to Down Syndrome, being a parent is difficult. But yes, there are some added complexities to having a child with Down Syndrome. But, regardless, I know one thing for certain, I wouldn´t trade it for anything in the world.
We are positive about the future but realistic that there is still a long road to make inclusion a reality. Spain has advanced a lot in regards to integration. Despite the hard hit of the economic crisis, there are opportunities: we live in a country with the first European with Down Syndrome to go to college, or the first ever person with Down Syndrome to hold public office. But, it´s not enough.
I dream of Frederik living in a global society that values his worth where people with Down Syndrome are part of the “normal”. My background has taught me that the definition of normal is defined differently depending on where you are from. Normal was different where I grew up in the Southeastern part of Turkey than it was in Los Angeles where my husband is from. Normal is defined one way by my grandparents than by me. Normal varies widely across cultures, households, and individuals. This is what, in my opinion, makes the world so rich.
From the moment the doctor uttered the words, “It´s positive for Down Syndrome” I knew inclusion and integration across the globe was to be my purpose. So I will continue to work to help create a world that learns to appreciate and include Frederik and others with Down syndrome, in a meaningful and productive manner in that diversity.
Bea is a first-time mom to Frederik. When pregnant, the idea of becoming a mom was pretty scary, but the love she feels for her son has completely swept her off her feet. She believes she is destined to be Frederik´s mom and the luckiest lady in the world for it. Motherhood is the most beautiful thing that has ever happened to her. Bea and Christian, her husband, enjoy traveling, love having new culinary experiences and discovering new cultures. They continue to enjoy this as a family of 3 and having Frederik join in makes it that much more special. The family calls Madrid, Spain home and you can find Bea on Instagram @beathomsen.
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