October 29, 2014

The Darkest Days: The Amniocentesis Results are In {Down Syndrome Diagnosis}

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This is the sixth and final part of a series about finding out our unborn son has Down syndrome through an abnormal ultrasound and a Harmony blood test.  I wrote throughout the month and have kept every piece in tact so that it may help someone going through the same thing. Read part 1 here, Part 2 here, Part 3 here, Part 4 here and Part 5 here. Please keep in mind that these were my feelings at the time of receiving the news.

 

We have a clock on our wall that I love. A distant relative gave it to us as a wedding gift. I remember hearing it tick…tick…tick when I was home alone on my weekend (Thursday/Friday) while Andy was at work. I tried to keep myself busy. I volunteered, I did housework, I cooked…but when I got lonely with little to do, I would hear tick…tick…tick.

When you have a baby, life gets noisier. The quiet you once knew gets filled with baby cries, lullabies…and eventually the stomping of little feet and giggles that make you realize your purpose in life. I hadn’t heard that clock since Violet was born a year and a half ago. But in the last week of September, I heard it again and again tick…tick…tick.

After meeting the OB Specialist for the first time, we decided to go ahead with the amniocentesis. We had read some articles, including this one that made it seem as if the Harmony blood test was not as accurate as the makers claim. The specialist told us it would take 10-14 days to get the results back. The first few days of the waiting process were easy, some days were even joyful and then Monday came around…tick…tick…tick.

I tried to fill the time; my Mom, Violet and I went to lunch one day, I took Violet to a MOPS meeting another and I went thrift store shopping the next. I would even go for 5-minute periods where I’d forget that I was waiting on the biggest news of my life. But in the afternoons, when I knew the lunch break at the doctor’s office was over, it would hit me again. I’d hold my phone with sweaty palms and weak stomach and stare at the screen. Any time it made a noise, I felt like vomiting. I spent the afternoons thinking, “Just a few more hours and then I’m safe for the day”…tick…tick…tick.

The week of waiting was the most sickening experience of my life. 

I was completely caught off guard the first two rounds of bad news. This time, I thought it was best that I be constantly on-guard, prepared. Then Thursday came. I got a call from Andy around 4:00 saying that he was going to a Company Grade Officer meeting and would be home late. About 10 minutes later, he called back. I was in the middle of changing a diaper. Because it was so late in the day, it didn’t dawn on me that this was the call.

Andy said, “The doctor called with the results, he has Down syndrome.” I asked him if we had to go in to get the full report. The doctor said that it wasn’t necessary because it was “Garden variety Down syndrome.” What he meant by that was that our son has Trisomy 21 which is the most common type of Down Syndrome that is not passed down through genetics, but is a “bolt of lighting”, “a random act of nature” as he described it.

The clock stopped. I wasn’t threatened by the tick…tick…tick any more. The dreaded moment had passed. I hung up the phone, I finished changing Violet’s diaper and yelled to my mom in the other room “Results are in, he has Down Syndrome” as casually as if I was yelling “Hey, what do you want for dinner tonight?” I sat on the ground to play with Violet and my mom walked in the room. She put her arm around me, she squeezed me…and nothing. I had no reaction. No tears. No emotions. I felt numb.

If you’ve ever been in a car crash, you might not have felt pain immediately after colliding. But just give it a few minutes, a few hours, a night of sleep…it’s only a matter of time before you feel the effects of impact.

It started as a steady flow of quiet and wordless tears an hour or more after getting the news. I cried over lasagna that I thought I would have to force myself to eat…but if you know my mom…you know that woman can cook…and I’m pregnant. Even though I enjoyed the taste those soundless tears kept pouring down over mom’s homemade Italian.

I knew what I was feeling, what I was displaying, wasn’t enough. I knew that I needed to allow myself to feel all of the feelings at once or I would never be able to move on. It would just be random spouts of grief the rest of my pregnancy. So, I got undressed, I folded up a towel and put it on the shower floor, I turned on the hot water and let it all hit me. To say that I had “the ugly cry” is an understatement. I had the scary cry. The cry I had only seen a few times in my journalism career as I drove up early to an accident or a murder scene and family members were still there. It’s the cry that only comes from loss, a loss of life. Because that’s what it was.

Nearly every special needs mom has told me that I had to grieve the life that was lost. No, my son is not dead, but the son I thought I would have…that dream, that picture I had of our family died a little that night. Deep down I knew the portrait would still be beautiful, but it would look differently than I had imagined.

 This is normally the part of the article where I’d turn everything around and spin some sort of positive on the situation. Or tell you that I knew God was with me even at my worst moment. But I’m not going to do that. It wouldn’t be true to how I felt. It would be a disservice to any mom who may have just received similar news. No.

The water turned cold, I let my skin and tears dry, I got my awkward pregnant body off of the floor and I went to bed empty.

 

This is the sixth and final part of a series about finding out our unborn son has Down syndrome through an abnormal ultrasound and a Harmony blood test.  I wrote throughout the month and have kept every piece in tact so that it may help someone going through the same thing. Read part 1 here, Part 2 here, Part 3 here, Part 4 here and Part 5 herePlease keep in mind that these were my feelings at the time of receiving the news.

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12 thoughts on “The Darkest Days: The Amniocentesis Results are In {Down Syndrome Diagnosis}”

  1. He is still your precious lil boy..maybe even more than precious..you will be there for him and he will be awesome….prayers and hugs to all of you

  2. This will be ok. God is sending your family an angel. Blessing your family in ways you never could imagine.
    Sending love
    Ann Jones

  3. I have loved reading your journey. I love your honesty and faith. Thank you for writing with such honesty. These blog posts will be such a help to someone else in your position to know that it is okay to feel whatever it is they are feeling and to know that they are not alone in their grief for a life that they had anticipated. I am praying for you.

    1. Thank you Kasey for reaching out. Thank you for your encouragement and your prayers, they mean so much!

  4. Thank you for writing this beautiful and honest series of posts about your experience. I feel like I’m reading my own journal at times. My second child, my son Gavin, was born on March 5th of this year with Down syndrome. We had no idea that anything was awry and in a matter of moments everything I knew about my world was flipped upside down. Gavin had open heart surgery the day before he turned two months old… Such a scary thing to go through as a parent. Anyway, thank you for making me realize that I am not alone in this journey.

    1. Lauren, I’m so happy to hear that you felt connected to this series.I leave it up there for people like us! Please feel free to reach out whenever! I feel like we got a head start because of the prenatal diagnosis, so if you ever need anything, please don’t hesitate to ask. If you haven’t already, please “like” the Facebook page and keep following along! Also, if you are looking for an online support group, DSDN has great Facebook groups!

      1. Thank you! I am interested to look into some of the resources you posted and I look forward to following your journey!

  5. I got my amnio results in today. I did the exact same thing. Lied on the showe floor and cried, sobbed, wept… Until my 4 year old came in and asked if I hurt my head and need help. I had to pull it together for him. My 10 year old and my husband. I just can’t. I am so angry so scared! I want this to be a dream! I imagined we get the call it was negative and we would be that exception. But we’re not. And he dark fear sets in of the future.

    1. Lisa- it gets so much better! I hope you have continued to read on from this post. Please read my letter to Anderson at his first birthday <3

  6. I just read your story, and I couldn’t help but cry because our stories are so similar.
    First of all my husband is USAF but he is deployed so we got to deal with all our crazy news over texts and phonecalls.
    At my 20 week ultrasound they found a “soft marker” of Downs syndrome. The news didn’t phase me because I didn’t want to freak out over nothing. The doctor didn’t seem too concerned but suggested the bloodwork genetic test, 4 days later I got that call, I wasn’t expecting it for another week. I was completely blindsided. That test was positive. So the following day I went in for the amnio, 3 days later I got the preliminary results also positive. My heart was broken into a million pieces. So now we had 2 options, do we keep her or do we go thru with an abortion (not the easiest thing to decide with your deployed husband) we had 2 weeks to make a decision that would completely the our worlds upside down either way. I as time went on I started getting cold feet and uneasy feelings about the hospital itself, my husband and I decided we were too scared to go thru with an aborting at 22 weeks, the risks were too much to deal with. We always wanted a baby we just don’t want to see her suffer. From the time we got results to the time we made our decision I HATED being pregnant. I was showing already so people kept commenting on it, but I didn’t know how I was supposed to feel about my baby. That was the hardest week and a half of my whole life.
    Now I am 26weeks, and doing my research downs syndrome.
    I am so excited to meet my daughter and welcome my husband home this new year. And in 7 months we PCS to Germany.

    1. Hey Autumn, I hope you kept reading on in my blog. Life gets so much better. Anderson has taught me so much and I wouldn’t trade this new life for anything! Have you heard of the Down Syndrome Diagnosis Network? Joining their pregnancy group was LIFE CHANGING for me. I hope you check it out and let me know if you have any questions <3

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