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survival

May 19, 2018

It's been exactly one year (almost to the minute) since I learned that my pregnancy was in jeopardy. I still remember parts of that day like it was yesterday and yet today I am holding my 8 month old little boy and the whole thing feels like it was a lifetime ago. I was hoping this day would come and go just like any other, but for the past week, the overwhelming emotions and anxiety that came with this day last year has been slowly, but surely sneaking in. So instead of hiding from it and ignoring it like I wanted to, I'm going to celebrate making it a whole year since the day I never thought I would survive. 

The week leading up to my anatomy scan, I had been feeling uneasy. I'm usually a pretty anxious person, but for some reason, I just knew something was wrong. It's why I had asked to find out the gender ahead of time, I wanted that to remain a happy, special moment in my pregnancy, and it is why I had taken the entire day off of work instead of just that morning. It was 7 a.m. on a Friday and somehow, someway I knew the rest of my life would not be the same after I entered the doors to Froedtert that day. 

 

Even though I had braced myself for bad news, my heart still skipped a beat when I heard the ultrasound tech say something was wrong. Its like all the air had been sucked right out of me and from that point forward the whole day proceeded as if I was an outsider looking in, watching this horrible scene unfold to someone that wasn't me because in my head all I could keep thinking is there's no way this is happening. 

 

I "watched" as the tech handed me a box of tissues and told me to sit tight while she consulted the doctors and then I watched as a nurse hurried in to hold my hand and ask if I needed anything. What I need is for someone to tell me that the tech made a mistake and everything is fine. Then I watched as I picked at my finger nails, tapped my toe and pulled on my earrings - all immediate tells that I am nervous or holding back tears. I watched as I quick called my mom and let her know that I wouldn't be making it to breakfast after all and then I watched as I crumbled to tears on the phone because there really is no such thing as keeping it together when your mom asks what's wrong. I watched as Asher's "dad" completely retreated into his own world and somewhere my heart told me that from this point forward I was on my own. I watched as I was moved into another room where the door was constantly being opened to a new face, a new set of bad news. And finally I watched as I was sent home to process everything I had learned that day. 

 

That afternoon I crawled into bed with no intention of ever leaving it again. I wanted to just disappear. I no longer wanted to exist because existing meant having to deal with everything I had just heard. 

 

Your baby has a few different defects which lead us to believe that he either has Trisomy 13 or 18. 

 

Your baby's development is so irregular that he will likely not make it to birth. One day you are going to wake up and you just won't be able to feel him kicking anymore. 

 

If he does make it to birth, his quality of life will be so low that you really need to consider your options. 

 

We can offer you support on palliative care, funeral arrangements and grief counseling. 

 

May 19, 2017 will forever be marked in my memory as one of the worst days of my life. The days that followed didn't get much better. I was in constant fear and the grief was overwhelming. 

 

Exactly 5 days later, the preliminary results from my amniocentesis came back and were clear of any indicator of T13 or T18 and slowly, but surely I began to crawl out of the darkness I was living in. I knew we still had a long journey to get through and I knew things were still wrong, but with the ruling out of T13 and T18, I was able to begin to hope that I would still be able to take a baby home from the hospital and that he would still have a life worth living. 

 

With that hope, I began the next part of my journey: survival.

 

Some days, survival seems easy. I have a beautiful little boy. I have an amazing support system. Asher has already defied so many odds. We may not be thriving, and truthfully, we may never thrive, but we are definitely surviving - putting one foot in front of the other, keeping a smile on our face and making it through. 

 

And then there are days where survival seems impossible. The days where it's all just a bit too much, where a year of exhaustion catches up to you and the tears won't stop. The days where I want to crumble to pieces every time someone asks how we're doing and I look around at other families and feel nothing but jealousy. 

 

I'd like to say that in the past year, the easy days have outweighed the tough ones, but I don't really know if that's true.

 

Whichever it is, however we did it, we did survive. And today I am going to raise my glass to that. 

 

 

 

 

 

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