Once upon a time, not very long ago, I felt strongly compelled to include "Evie has Down Syndrome" every time I introduced her to someone new. I don't do that anymore, and haven't done that in quite some time. Once in a great while someone will ask, but not often. Most people seem to follow my lead when I introduce her as Evelynn, and they talk to her, wave to her and say Hi, or I ask her if she wants to give them knuckles (fist bump) or a high five. She will if she wants to. Either way they tend to smile and move on to whatever they were doing.
I've been attending a training this week, and one thing that stuck out to me personally is the part of me that is the protector. The Protector is the part that wants to get out in front of questions. The part that introduced her with her name and diagnosis when she was an infant. It's like what Fat Amy said in Pitch Perfect when she was asked "You call yourself Fat Amy?", "Yeah, so twig bitches like you don't do it behind my back." If I say it first, I disarm the person who would ask. Make sense? As I've been spending time diving into that piece of me, I realized there is another question that I still occasionally find myself getting out ahead of... a question that came often in the beginning from everyone around us, and still does occasionally. The question is...
Didn't you get the test?
There are so many thoughts that come into my mind as I consider that question. When I hear it, or it is implied, I can still feel myself bristling. Didn't you get the test? As if that would have changed anything. The implication sometimes feels like someone is really asking this question and implying that had I known, I wouldn't have had her. Because obviously no one would knowingly bring a child into this world with Down Syndrome. Ugh.
So obviously I didn't get the test. Note: there is dripping sarcasm in my tone as I type that.
When we were trying for baby number two, we weren't considered young in the medical sense. I was 39 when I got pregnant with her... after years of trying. We were just about ready to give up and accept that our hopes of having two kids sailed far away on some ship. So when we went to the OB for the first time after learning and confirming that I was indeed expecting, we talked about family history, risks, etc. Down Syndrome is not something that is inherited, at least not the type Evelynn has. So we did do the NIPT test. The results were as follows:
Trisomy21 Low Risk Risk before test: 1/68 Risk after test: <1/10,000
The results sheet also says "Sensitivity is the ability to correctly identify a truly high risk case as high risk. For example, in a group of Trisomy21 cases, Panorama will correctly identify more than 99% of those cases."
With those results of the NIPT and other factors considered, my OB and I didn't see the need to test further. I participated in more ultrasounds and scans due to my age. Evie was growing appropriately, there were no growth or organ-related issues noted, no facial characteristics, nothing that made us question the results of the NIPT.
Well... there you go. The protector part of me explained it all. You're welcome. The more I wrote, the more I felt the need to explain. There's another part of me that thinks about that information and sort of judges, but also exclaims that it is no one's business whether we got tested. Yet here we are. There is no right or wrong way to find your way as the parent of someone extra, so here I go making my own way.
I know everyone makes their own decisions, so I am not getting into whether abortion is right or wrong. That is not the point of this post. I think it is important to say that for me, abortion was never an option that I have felt would be right for me without extreme circumstances. I know there's no way to know for sure without experiencing something. What I do know is that anytime I had worries or thoughts about something being wrong with either baby during each of my pregnancies, I would consider how I'd choose to respond. I worried about all kinds of things. I had nightmares about all kinds of things.
Interestingly enough, never really worried about Trisomy21. Maybe that's because my Evelynn Kate wasn't and isn't someone to fear. Maybe some part of my soul, body, or higher power knew that. Either way, I am aware that I cannot fully know how I would have responded. I know that it would have been immeasurably hard, terrifying, and we all would have been full of questions. I do know that. I also know that I am so incredibly grateful I never was even asked to consider aborting her. I never had to hear that from my doc, from a family member, or even my husband.
I am so fortunate that I I got to enjoy my final pregnancy, with only the typical worries that come with a new baby. You know what though, I can also see the benefits of knowing ahead of time. In some ways, I imagine that could have been a blessing too. My friend knew ahead of time, and knew much of what her sweet girl was going to need. To some degree she and her husband were able to prepare themselves for what was coming. Rob, Ben and I didn't get to prepare for that. We had no idea I'd spend a night alone in the hospital while Evie was flown 4 hours away, with Rob and Ben driving to get to her. We didn't know we'd been calling in reinforcements to help us get through the scariest time of our life together. We thought I'd be coming home with her in my arms to introduce her to our dog and everyone who came by. Does it sound like I'm contradicting myself? Ha! If so, it's because everything about having a baby, especially a baby with that extra somethin', is a contradiction. It's happy tears and cries of devastation. It's pure joy and all-consuming fear. It's the desire to shout her birth from the highest mountains and keep it all private so we could process it. It's everything all at once.
I'm hoping that as I process all of this, I'll find how I want to respond to that question going forward. I don't want to feel like I have to explain myself to anyone. Because the truth is, I don't. I also know that when people are ignorant about something they will often fear or resist it. So while they may be implying something negative and assuming I didn't get tested... I hope to let them. Let them make their judgments. I also believe in educating people. Those who are willing to listen and learn... I'm more than happy to talk about our experiences and how Rob and I joke about being the 1%-ers. Because we do. For more reasons than Evie's surprise diagnosis, but definitely NOT including the 1% of the financially wealthy! ; }
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