The Diagnosis

The Diagnosis

I remember clear as day, like it was just yesterday, sitting in my OB’s office for my 12-week appointment for baby.

This was the appointment that we had to decide if we wanted to do any genetic testing to rule out any issues that our anatomy scan could possibly miss.

At this time I was only 25 years old. I was young still. Everything I thought I had to worry about with pregnancy I only ever heard happen to women that were pregnant at an older age. So, I honestly felt I had nothing to worry about. My doctor even said these exact words “it would be highly unlikely that the things the genetic testing are looking for would be wrong with your baby since you are still young.”

At this point in our lives, my husband and I decided we didn’t want the genetic testing done. We took those words from my doctor and we both agreed that whatever results we would get wouldn’t change our minds anyway. We were still going to have this baby and love it just as much so we decided to trust the process and pray to God that he would handle the rest.

It’s funny to me now looking back on this decision because after that appointment and up until the day she was born I always wondered what the test would have told us. I caught myself staring at ultrasound pictures all the time trying to see if anything stood out to me and would tell me that there was something off with my baby.

There was always this gut feeling I had that told me we should have done the testing. I never shared this with my husband ’til after our daughter was born though.

It was a strong intuition I had throughout the rest of my pregnancy but I just wrote it off as a first-time pregnancy type worry and tried to clear my mind every time the thought would come back. But you know what they say about that women’s intuition – it’s strong and it hardly ever lies!

Weeks and months go by and I actually went past my due date. I was 42 weeks and my induction date was scheduled for Wednesday, February 21st. I had one last appointment left before I could be induced though. Monday, February 19th I went in to see my OB to check on the baby one last time. It was at that appointment that I shared I wasn’t feeling baby move as much as I was before. The movements were less than every hour. Probably every couple of hours and if you’ve had a baby before or work in this field you know they don’t like to hear that. Especially when you are past your due date already. So, I was put on a stress test monitor and it was after that test that my doctor decided to induce me that night instead of waiting a couple more days. She didn’t want to take the risk and we are so glad she didn’t.

Nervous, scared, and excited all mixed into one big emotion we went home, grabbed our bags, kissed our fur baby goodbye, and headed to the hospital having no clue what we were really about to get into. Pitocin got started and I was in labor for 11 hours and pushed for 1 before my whole world was turned upside down. Or so I thought.

On February 20th at 12:13 pm our daughter, Raelyn Lee was born. Everything was completely normal and exactly what I had envisioned labor to be like up until the second she was born. She was never placed on my chest because during labor her heart rate kept dipping and whatever they saw on that monitor while I was pushing mixed with her inhaling meconium they wanted to take a closer look at her right away. I was already warned that she would be looked at by their NICU team so I shouldn’t be alarmed when I see a lot of people in the room. So, I wasn’t.

I remember hearing her first cry. But I still hadn’t seen her face. I grew this baby for 10 months and all I wanted was to see who she finally looked like, me or her dad. I asked my husband to go over and take a picture of her so I could see. The second he handed me the phone to show me the picture he had taken I knew. I saw it in her eyes. The beautiful almond-shaped eyes are what told me so. But at that time I didn’t think they were so beautiful. I told my husband not to send that picture to anyone because I was hoping so badly that I was wrong and that I could maybe get a better Pinterest-like picture first. Mind you no one at all had mentioned anything to us about Down Syndrome yet. I never even heard one single nurse mention the words Down Syndrome until the room got really quiet and calm. This is when I realized my gut feeling all pregnancy long was really trying to tell me something.

I had just given birth and was finally all cleaned up waiting to be able to hold my baby and that is when the neonatologist walked over to my bed and handed me a menu. His first words to me were “it’s been a really long day, you should really order something to eat.” He then continues to say “I am really sorry to tell you this but there are some markers on your baby that lead us to believe she may have Down syndrome.” This is the exact moment I felt my heart break into a million little pieces and the exact moment I was never again that person I used to be.

I honestly don’t remember much of what he said after that because I couldn’t believe he really told me to order some food before he delivered the news of my child possibly having Down syndrome to me. The only thing I caught was that they were taking her to the NICU to do more testing and those tests would 100% confirm if she had Down syndrome or not and would come back in a couple days. All I could do was cry. And I don’t think I stopped crying for two weeks after. It honestly felt like I was mourning a death. This baby that I grew and came to love inside of me felt like it was replaced with a totally different baby that wasn’t mine and one that I felt I couldn’t love.

There was a point after delivery that I was somehow left all alone in my room before they took me up to the postpartum floor. I remember sitting on the edge of my bed looking out the window just begging God for it all to be a dream and to let me wake up already. I wanted so badly to go back to a couple hours earlier where everything was happy and exciting and everyone couldn’t wait for the baby to be born so they could see and hold her. I was angry with God. I couldn’t understand how he could possibly think that I was strong enough or capable to mother a child with Down syndrome. I didn’t even know how to be a mom yet. This was my first time and then he wanted to throw special needs at me? I had zero faith in myself to be a special needs mom. I didn’t want to be a special needs mom.

But I am here today, 3 years later to tell you, that I am a special needs mom and it is the BEST thing that has ever happened to me!

I’m here to tell you that the extra chromosome your baby is rocking is nothing to fear! That extra chromosome has the ability to make any hard heart turn soft, a puddle actually. And the love and joy you think you were just robbed of when you found out that your baby has Down Syndrome will actually be multiplied far greater than you could have ever imagined.

After battling severe Postpartum Depression, thanks to the terrible delivery of my baby’s diagnosis and lack of knowledge on my part, I made it my mission to provide Raelyn with every and anything possible to ensure that she would thrive and prove anyone that ever doubts her wrong.

Today, Raelyn is 3 years old. She’s a big sister to her little brother, Watson who she loves so much and wants nothing more than to hug and kiss him all day. She just started walking, She loves to sing and dance, and is actually weeks away from starting preschool because she thrives the best when learning from others around her. She’s really just like any other typical toddler who loves to be sassy and will only eat chicken nuggets for lunch and dinner.

Sure she has 3 different therapies that she goes to weekly and a few extra appointments throughout the year that keeps our schedule busy none stop, but all those things are put into place to be proactive and give our kiddos the best quality of life possible in a world that doesn’t deserve them.

All this to say, don’t let your baby’s diagnosis scare you. Please open your heart to that baby and let them love you. I promise you that their love is your healing! If I would have let fear get in the way and let me make a stupid decision based off of a diagnosis I had no knowledge of, I would have never found out that Raelyn is everything and more than I could have ever dreamed of when I first found out I was having a baby girl!

Instead of staring at that ultrasound, I now stare at her and feel my heart burst out of my chest because she really is heaven on earth and I will never understand how we got so lucky to be able to love a little extra! <3

Antonia Schmidt

P.S. Raelyn has started school and is rocking it just like she does with everything. She is a great kid and it’s exciting for us all to get to watch her grow and change the world <3 You got this Rae!

 

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2 Comments

  1. Gloria on April 26, 2021 at 11:19 am

    Well said Toni. You have made me learn so much about downs syndrom. I can not know the hardships it can bring but I see the JOY in the pictures you post. She is blessed to have you and Taylor as her parents.

  2. Sandi on April 27, 2021 at 8:18 pm

    As a mother of a 49 year old Down syndrome son I understand all your feelings. Your daughter is beautiful and you are a fantastic mom. There is so much more available today that will help her to achieve whatever she wants. Wish I had a friend like you when my son was 3! Enjoy the ride.

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