I decided on the 2 year anniversary since getting Aria’s Down syndrome diagnosis to share some of the writing and documenting I did the weeks following while I processed her diagnosis. I didn’t now if I was ever going to share this or if I would ever come out the other side and be ok with it. Now two years later, completely obsessed with my girl, I wouldn’t change a thing and although our story isn’t easy, it is real and it is ours. Thank you for following along.
November 30, 2018:
“Hello Mrs. Czernek? This is ______ from doctor L_____’s office calling with your test results”
“Yes, hi how are you?”
“I’m good, I am calling to tell you your test results for the Down syndrome and spinal bifada test, you tested positive for the down syndrome test…. this doesn’t mean the baby will have Down syndrome it just means there is a higher chance than the 1 in 295.”
“Ok what are my ratios?”
“Let me see here, um actually can we schedule an appointment for tomorrow?”
My heart sank.
I was at the studio getting ready to take a class but had been anticipating the call for the last couple of hours. I knew the baby was fine and Down syndrome free but I just wanted to hear it, I wanted to hear the results, close the chapter on this test and move on. That call had not gone how I excepted.
I hung up the phone and called Tomas.
“Babe, the nurse just called I tested positive for the Down syndrome test, she said it doesn’t mean the baby has Down syndrome but there is a higher chance. But babe I’m nervous, she wouldn’t give me any more information on the phone, I have an appointment tomorrow at 10:30.”
He was silent at first “Ok well let’s not get ahead of ourselves and see what they say first, everything going to be OK, we got this! What time will you be home, I’ll meet you there”.
He was upbeat and his normal Tomas-self but I could tell he was ready to go into full research mode. We hung up and I hopped in the class.
While I worked out I was numb, I looked in the mirror at myself “holy shit am I ever going to be the same again?” I probably worked out harder than I ever have in my life, holding back the tears but knowing I had to do it, I felt so much tension I needed the outlet. And processing, there was no processing I couldn’t feel anything, just exercise after exercise trying to shake the feeling, wanting things to go back to how they were just five minutes before that call.
I got in the car and immediately called my mom. Tears streaming down my face angry and confused I let it all out. I said things to her that night that I would never want to hear repeated, but I needed to say it. It was real, it was raw, and it was how I felt and I needed to be heard and this might be my only opportunity. I was so angry, it hurt so bad and I just wanted my Mom to take it all away, but she couldn’t. I’m used to being so strong, ask about anyone and I can pretty much handle anything but in this moment, I felt so weak.
She encouraged me in her normal mom self, had so much compassion and never made me feel bad for the things she heard me say, she only agreed and kept saying “I know hunny” over and over. Honestly that reassurance was all I needed from her, permission to let it all out and not have to have it be justified.
We hung up the phone and I sat in the car and stared through the big window in the front of our house. The Christmas tree was up and to the side I could see Tomas playing with the kids in the background behind it. I took a minute, wiped my face, took a big deep breath and walked inside.
I opened the door to the kids screaming “mommy!” and looked at Tomas. He had a big smile on his face and he was bringing me Kai to hold.
“So, did you do some research?” Knowing he had but wanting to know what he found.
“Yeah! I read that families with kids with Down syndrome are happier!”
My eyes started to well up with tears again but I couldn’t help but smile. My sweet husband, my rock, and the most consistent man you will ever meet. Happy and optimistic 24/7 regardless of how much our world might be crashing. And in that second everything felt ok. Maybe he was right, maybe he wasn’t, but knowing that I was married to the best teammate in the world made me feel like OK maybe we can do this, maybe we’ll survive this.
We went into full kid mode, Kai cut his finger and we cleaned up blood from about 60 places around the house while Mia brought us toy after toy to play with and asked us incessantly about Halloween even though it had been long gone for about two months now. Things for that hour seemed normal but I was anxious to put everyone to bed and read about these potential numbers that I could be hearing at tomorrow’s appointment.
After everyone was in bed I grabbed some soup, I couldn’t even stomach the idea of eating anything else and I started reading. I decided that I wouldn’t even care about the number if it was more than 1 in 100 but anything else I had permission to freak out.
That night I didn’t sleep well. I kept waking up, looking at my phone counting the hours down until my appointment. I would start to freak out and then slowly walk myself back from the edge remembering that I didn’t have enough information to really freak out yet, and I would fall back asleep.
December 1, 2018:
Morning came and I had to teach a barre class, which I was really looking forward to because I needed the escape and normalcy, I craved it. I taught my class and went downstairs to pick up Tomas from his office and we were in the car. We stopped at Starbucks and while in the drive through line I almost threw up. My level of anxiousness was driving me to that point, and I had never been that anxious before where my body responded in that way.
We got up to the drive through window and the barista told us the person in front of us paid for us. It was such a tiny gesture, but it was what I needed. It made me tear up because I felt like ok today could be a good day, this day can turn around and maybe it starts with this.
We walked into the office and I was met by the smile of my best friend, Christina. She had just her twins two weeks prior and was randomly there at the same time for a checkup. She immediately hugged me, squeezing me so tight and treated me as normally as ever, which being my best friend, she knew I needed. I had texted her that morning to pray and actually knew her appointment time and that I would see her and didn’t want to have to explain it there.
She got called back right away and Tomas and I sat in the waiting room and waited. Tomas did whatever he could to distract me but he knew where my head was at. I couldn’t think about anything else I just wanted to know the numbers. We sat there for about 15 minutes but it felt like hours and eventually got called back.
Shortly later my doctor walked in. He seemed solemn but still his sweet and kind self but you could feel the mood shift, like this was probably going to be one of the harder conversation he was going to have that day.
“So, the results came back positive for the Down syndrome quad screening” (he did not sound as positive and upbeat as the nurse did the night before on the phone). “The ratios are 1 in 19.”
I could feel my heart pounding in my stomach.
“These numbers are really high for someone your age and not something I see very often. Usually for someone who is 31 I am reading numbers more like 1 in 150.”
Honestly anything he said after that seems muffled like how in the movies they zoom in on the main character with talk in the background that cannot be made out because the character can barely comprehend what they are hearing. Turns out they do that because its real, that’s what happened and I was experiencing it.
A few minutes later I started to cry. The doctor assured me my feelings were normal and I should be crying this was a lot, and then he walked me down the road of what delivery and life would be like if our child did have Down syndrome. He was very poised and matter a fact and I was a mess.
I knew when he shared there was a 1 in 19 chance that we were the 1. I felt it in my core and just knew. I knew this meant that our baby girl that we had so many hopes and dreams for, whose name meant “lion of God” had Down syndrome and I was terrified.
We left the office and went to do more blood work, a test that would confirm yes or no with a 99.8% accuracy. I would get the call in a week. We got in the car and I began to cry again. Tomas held me, and said “babe there’s only a 5% chance she has it, if they say there is a 5% chance of rain, it doesn’t rain”. But in this case, I knew it was going to rain.
Tomas spent the drive encouraging me and trying to distract with his humor but I couldn’t stop crying. Tears continued to stream down my face, no matter what I did I couldn’t stop it. We went to the car wash and I went in the bathroom and sobbed. I looked in the mirror and my eyes were puffy and I looked like such a hot mess. I tried to stop crying several times but couldn’t I just stood there gasping for air wondering if anyone could hear me but barely caring.
I gathered myself and Tomas convinced me to go on a lunch date with him. He told me I have to eat and we just needed to change up the scenery and take advantage of the alone time together. We went to a taco place and once in line I ran into one of the members at my studio. Honestly, small talk was the last place I was in, but we were in this line together so I went with it. We ended up talking for about 20 minutes and it was honestly so nice. I was able to take my mind off myself and she shared with me about how much the studio and I had impacted her and it was so refreshing to be in that work zone for a second.
We ended up taking our food to go and Tomas dropped me off at home. At this point I felt less emotional and more numb but I couldn’t stop crying, I gave up battling it because it took too much energy. I would just incessantly wipe the tears as fast as I could to keep reading everything on my computer screen. Anyone with my ratios had stories all over the place, most test came back ultimately with a negative but there always has to be the 1.
The number started to drive me crazy and knew I couldn’t spend the next week studying blood test statistics and stay sane. I hate how I felt, I felt sorry for myself and so sad and consumed in numbers that ultimately didn’t lead me any further in my conclusions. I sat on the couch and decided I needed to change my perspective, or this was going to eat me alive and I couldn’t do it. I couldn’t go down this way, I had two toddlers that needed me, I refused to live this way for another week because it wasn’t going to change anything, the outcome would be the outcome.
I decided for the sake of my sanity I would research and become knowledgeable in what it’s like to have a child with Down syndrome because at least I could do something with that. The ratios and statistics were getting me nowhere.
I found a blog of a mom with a daughter with Down syndrome and started to read about her life. What the day to day was like and the challenges as well as the rewards. The more I read the better I felt. I was still scared but I started to have peace about the whole thing. The scary big monsters that I had built up in my mind were getting the light shed on them and they were really just little figurines.
The kids woke up from there nap and I turned my focus completely to them. As we sat on the floor, played, and built a fort, I started trying to picture what life would be like if I had a baby with Down syndrome. I realized what an amazing big sister and brother Mia and Kai would be to their little sister with Down syndrome. Like it almost made sense based on their personalities. Mia is strong and fierce and a force to be reckoned with, if anyone were to mess with her baby sister, they were going to have to go through her first. She is an advocate even at her little three-year-old self and she is bold, so so bold that you know she is destined for big things, like I could see it so clearly, I could almost touch it. And Kai, sweet baby Kai, lover of all lovers, snuggly and gentle hearted, sensitive and so so sweet, he would love her hard. His approach is gentle and emotional and he feels so much. His compassion and love would shine in so many ways that with the combo of those two, I know she would be set up for success, no doubt.
As I pictured it more and more fears began to slip away and the peace continued to creep in.
I updated a small handful of family and best friends on the doctor’s report but also my approach.
“we’re not going to focus on number and statics or even get caught up in the likelihood of her not having Down syndrome. I wanted to focus on the positives that come from if she does have it, if she doesn’t have it great, let’s move on at least I’m more knowledgeable on Down syndrome but if she does all the blessings she will bring to our life regardless, all this positives of both. I have to be in this place this is my only way to stay sane and level-headed this next week.”
Everyone was on board.
Week of December 1, 2018:
That week I read. I read and read and read. I ordered a book called “Bloom” same author of the blog I was reading and read it as fast as I could. I got my mind ready, I knew the call was coming and I wanted to be prepared and this is all I knew I could do.
December 8, 2018:
Monday morning came and so did the call.
“Hello Mrs. Czernek? This is ______ from Dr. Langley’s office. I know you called on Friday about the results and we didn’t have them, but I decided to call over to Labcorp to get them for you.”
“Ok thank you, I appreciate that”
“Mrs. Czernek the results were positive….. ok?”
“yeah…. yeah, ok….”
“do you have any questions?”
“No, not at this time.”
“Ok I am sending your results to the hightech ultrasound so they can review them before your appointment on Friday”
“Ok thank you, bye.”
It rained that day. Turns out it does rain when there is a 5% chance.
I was getting ready and listening to worship music when she called, so when the phone called ended the song “Be Still” started loudly playing on my phone. I sat there and listened to the words.
I didn’t cry, I wasn’t in shock, I knew this was coming and felt like confirmation, now I could move forward, as hard as that might be, there would be movement.
I called my mom, she knew it too. I gave myself a pep talk as I talked with her about all the potential that could come with this.
“I know I can do this, I know I can handle this, it’s gunna be hard but what isn’t. This is my new platform, maybe it can help to save so many babies, I can create change, on and on…. “ I don’t even know if I fully believed everything I was saying at the time but I needed to say it. I needed to put it out there and start to believe it because this was happening and this was my first conversation and it needed to set the stage for all the hard ones I was going to have that day and maybe forever. I couldn’t start at the bottom, I needed to be at the top and my mom was my top.
I drove to Tomas’ office and pulled him aside.
“I got the call, the test came back positive….”
He looked at me, smiled, and pulled me in and held me so tight. He began to cry and tell me how blessed we are and what are miracle our little girl was, and how we were chosen and the lucky ones. I knew what he was saying was true and I really believed it even though it was so hard.
We went and sat on his office couch and he began to dream. He listed all the things we could do for her and how we were going to make her dreams happen. We were chosen to be her parents and we were going to give her the world. We would buy a house when she was older with an apartment in the back for her to live in and maybe she’ll get married and her husband will live there too.
“well, do people with Down syndrome get married?” he asked.
“I don’t know” I cracked a smile.
“hmm we’ll see, he would have to be awesome” he laughed.
Everything Tomas said was perfect, like he always is, honestly, I didn’t expect anything less. He sat there with tears streaming down his face, kept hugging me, and telling me how excited he was to meet her, and how he just knew she was going to be so cute.
It was a conversation I never pictured us having but if we had to have it, this is how I wanted it to go down.
The rest of the day was filled with conversations like those. Bringing people up to speed and assuring them everything was going to be ok, and I was ok, based on everything I had read and become familiar with. The day was honestly exhausting. It was a hard conversation to have over and over and I hate talking about myself. By the end of the night I was so tired and ready for a new day. The initial hard conversations were over and I was ready for a serious break.
I went to sleep that night and had the best night’s sleep I had had in a week.
To be continued…..