Everyone keeps saying the same things. And it’s not that I’m unappreciative or ungrateful that people think this of me. I just don’t know if that’s what you’d call this. I don’t feel worthy of these titles. I’m just trying to survive this.

I cry. A lot. Jason calls it leaking. It happens when I least expect it. Without warning or provocation. In the car, at work, in stores, showering (this one’s my personal favorite. It’s like it’s not happening. Like a wash lol get it?).

Humor has definitely helped. I mean, if anyone knows me, you know I’m kind of a sarcastic asshole lol not in the mean way but I can find humor anywhere. I have to preface a lot of what I say now with “please trust I’m not being insensitive when I say this but…” For instance when we were told Oliver’s radius was missing in both arms, I looked at Jason and said “if my son’s worst outcome is he has T-Rex arms…bring it on!” Was it wrong to say? I don’t know the rules here.

I don’t think the average person is built for this kind of blow. But I’ve learned to take the punch and regroup for the next one. Emotions come in waves. I like to hear from moms who are 3,5,10 years past their nightmare and I think wow, look at her. She’s a damn superhero! I want to be her one day. I do well with facts. I can talk about his ailments and what the doctors say all day long. Ask me how I’m feeling and cue the waterworks. I’ve been asked why don’t I take off work? Go back to NC? And do what…sit at home? Sit in my parents living room all day? My home and my husband are here in Washington. My job, my career is here in Washington. I look forward to the 8 hours a day I get to put my mind in my work and distract myself. Should I be taking more time for my mental health…maybe. But I’m just not built like that. You pick yourself up and you keep pushing.

I feel like my whole life is just a made for tv storyline. The silliest, unimaginable things happen to me. Where I thought having a smooth pregnancy would take place for me, is laughable. I played myself (DJ Khalid voice). I’m a diabetic, so going into this I thought my largest enemy, what I had to watch out most for were the effects my diabetes would have on my baby. I watched what I ate, I checked my sugars every 2 hours, I took my insulin 5 times a day. I read nutritional labels, I searched the internet for alternatives. I thought I was doing my part and then some to protect Oliver from harm caused by me. I didn’t take into account the bogey man under the bed. Cell division errors. Something completely out of my control.

When you give birth at 35 or older society says your old and have to be monitored closer. Your’re given a genetics test to complete with blood work. And wait usually a week for results to come back. This test looks for the top 3 genetic disorders commonly seen in “geriatric pregnancies”. Trisomy 13, 18 and 21 (better known as Down syndrome). But also during this test they can determine the gender. I never in my wildest dreams thought to worry about what results I got. I was more excited to know the gender at 12 weeks when usually you don’t find out until after 20 weeks.

That day I worked from home since I’d be traveling north past Seattle to a clients office. Jason was on leave, so he was home too. I was at my computer and Jason was eating breakfast next to me. My phone rang and it was my OB’s office. The nurse verified me and said your NIPS test came back and it’s positive for Trisomy 18, it’s not a diagnosis just wait for maternal fetal to call you. It was like she threw a flash grenade into a room and quickly ran away. Giving me zero time to ask questions or delay her to where she would have to respond. The call ended. I immediately went to Google and well, Google it yourself and you’ll understand how I immediately broke down. I cried so hard I couldn’t breath. I couldn’t open my eyes. I couldn’t and didn’t want to believe this.

I felt a million miles away from my own body. I didn’t know what to do but I wanted my mom and dad. Like a child, I needed their comfort. I needed to be told everything was going to be ok. That I was ok. That we’d get through this as a family and this test would be wrong.

When the results are given you have a PPV and an NPV. Positive Predictive Value and Negative Predictive Value. I was given 94.6 PPV. In other words there was a 94.6% chance that my baby would have a genetic disorder characteristic of Trisomy 18. But this isn’t a diagnosis, they say. WTH?! Make sense of that why don’t ya!

I knew I couldn’t cancel on my client. Too many moving parts for me to pull the plug. So I showered. I put on war paint and I headed out. Jason came with me so he could drive. I’ll dedicate a whole post to how amazing this man has been for me. It deserves it’s own space.

It took about 2 hours to get there. We were in silence for the most of the ride. Digesting what was told to us. I went through a whole box of tissues. During that appointment I felt Like that scene from titanic when Rose describes how she was cool on the exterior but screaming on the outside and the next shot is the blow horn going off. That was me. The whole time. We finished and went to grab lunch. That was a disaster. I was holding back tears just ordering. I wish I could know what our waitress was thinking. We had to wrap it up quickly and go. I had reached my limit and needed to explode. The rest of the day basically went like this and for the next few days. I was inconsolable.

I want to blog my experience. When I found out, I looked all over the internet and socials to read about other parent’s experiences. I read their post, blogs and looked at their photos. I wanted to know everything. What to plan, what to expect, questions to ask. Because of that need for information, I want to blog my experience because I want to be that same resource I looked for, for someone else.

I was scared to speak to my son after receiving the news, scared to speak of my son to people. But now I want every opportunity to tell you about my Oliver Behr and his story. I want him to be remembered and recognized as my first born son forever.

Every day this month I will wear a Blue and Purple Ribbon. March is Trisomy Awareness month–Blue Ribbon. March 18th is Trisomy 18 Awareness Day–Purple Ribbon. I hope I’m asked by people what it means so I can at the least educate a small handful of people of what Trisomy is and in a small way honor and memorialize all the angels we lost throughout the years.

I thank you in advance to your support. For following our story and for keeping our son, Oliver Behr, in your thoughts and prayers.

❤ Jenn