-Luke 2:19
....I want to put a quick aside here about prenatal screening tests. The kind of screen I did is relatively new and is called a "Non-Invasive Pregnancy Screening (NIPS)" or a "cell-free DNA test(cfDNA)". Essentially during pregnancy, fragments of the baby's DNA ends up floating around in mom's blood, so they can take a vial of blood from mom, use some super cool lab techniques to separate out baby's DNA information and test it for a variety of different chromosomal and genetic abnormalities. They can also test for gender. There is no risk for baby, unlike tests like amniocentesis which carry a risk of miscarriage. Until recently, these tests were only offered to high-risk women (i.e. over 35) but in the last year or so have been more widely offered/covered by insurance so many more women are having this screening test done. NIPS tests are advertised as being over 99% accurate when screening for trisomy 21 (Down syndrome) but they cannot offer an official diagnosis. Prenatally, only amniocentesis or a chorionic villus sampling can offer a diagnosis of a chromosomal or genetic abnormality. So why, if these NIPS and cfDNA screening tests are over 99% accurate is that not a diagnosis? Well because accuracy is different than being specific, and accurate is different than being able to correctly predict a positive or negative result. This is getting into crazy semantics and statistics jargon... if you are truly interested in all of this, go do a google search. But bottom line. These screening tests can still have a relatively high false positive rate... and in a world where there is debate on worthiness of life based on a diagnosis, having the right kind of test is incredibly important. But that is a whole different topic. Anyway....
A couple of weeks after "the phone call" I had a high detail ultrasound showing that so far our baby's heart was developing as it should be, and showed no markers for Down syndrome. This didn't change the fact that we had still received a high risk result on our genetic screening test but it helped solidify our decision to keep our baby's potential diagnosis to ourselves until he was born. As far as Greg and I were concerned, once we were seeing a healthy heart and no other majorly concerning health conditions, so we decided we had no news to share. Our biggest news was that we were bringing a beautiful baby boy into this world and we were overjoyed.
Greg and I felt very strongly that we should not do any further diagnostic testing, such as amniocentesis, even though it could have given us firm answers. And even though our screening test advertises its 99% accuracy, at my age (28 at the time) it actually carried with it a 46% false positive rate, so essentially a 50/50 chance that the test was actually right. Even though I felt spiritual confirmation that our baby would come to us with that extra chromosome, my mind couldn't shake that 46% false positive rate.
Even though, it sometimes seemed like it would have been easier to get that solid prenatal diagnosis, I tried to tell myself that this situation was a lot like waiting to find out the gender of your baby until the delivery room. I would imagine that if that were the scenario, you would spend your time equally split - daydreaming about one gender or the other. Until you knew whether your baby was a boy or girl, both daydreams are real and deserve space. I would imagine that you'd also spend time preparing yourself to be okay with either outcome. Waiting to find out gender roughly paralleled my scenario, so that is what I held on to.
Overall, I think I'm grateful that we kept our "news" to ourselves. Part of me felt like I couldn't handle worrying about other people worrying about my baby when I really wasn't that worried about my baby... (follow that?).
Another part of me really related to Mary, the mother of Jesus, about whom the New Testament says several times that she, "... kept all these things, and pondered them in her heart."
The obvious reasons for why she kept parts of Jesus' early life close to her heart were that she knew deeply sacred things about his life that others would not know until his ministry began; that he was the Son of God and the Savior of the World. But, I also think she was afforded the opportunity keep these things close to her heart because... well, God had just asked her to live bigger than she knew how to live. I doubt Mary felt prepared, before or after the angel Gabriel came to her, to raise the Son of God. I doubt she felt ready to have her life so fully changed, there were probably even times when she didn't feel "chosen" but felt "picked on". Even if Jesus was perfect in his earthly life, that is still a ton of pressure to place on a mother!
Anyway, I'm not equating my situation to Mary's. Obviously. Except that I relate to wanting to keep really big news close to my heart. Mary had her cousin Elizabeth, whom she could confide in, but she was able to travel to another town, far away from her home and to me that feels like she was able to allow this new part of her life space and room to grow before she was ready to accept it. I wasn't ready to share this news with anyone in my circle, but I was blessed to have an angel mother of child with Down syndrome whom I was able to confide in and who gave me beautiful advice. I gave this big new part of my life space. I gave my sadness over the loss of what I thought my life would look like space. I'm trying to continually allow myself to feel all the feelings that come with this new journey. Because honestly, I feel like if I don't allow those things space, I'd be coping but not living. I'd be trying to shove these big feelings into an all ready full suit case, instead of just deciding to pay for an extra bag; making my life a whole heck-of-a-lot easier. And by allowing space, I'm able to better walk this new path and live this new life that is bigger and grander than I ever could have imagined for myself.
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One last thing.
One of the best pieces of advice I received during my pregnancy from that angel mother, was to allow myself to grieve the baby I thought was coming to my family, the one without a diagnosis. When I've expressed this to other people in my life I've been encountered with a lot of discomfort, almost like a pushback saying "don't feel sad!" and I think that stems from a misunderstanding about what grief is. It is true, grief overwhelmingly is about death and losing loved ones, which naturally holds a lot of sadness.... but it is also about allowing space for the feelings that come with losing something you were expecting, then allowing yourself to move on; coexisting with both the space of loss and acceptance. When I say I allowed myself to grieve the baby I was expecting to come to my family, I don't mean I was wearing a black veil and crying (although I did shed my fair share of tears) and feeling sad about a baby with Down syndrome, I mean I allowed space for the sadness, the anger, the fear that the baby I had been expecting wasn't coming, and then when I was ready, walked forward, ready to better accept my new path.
Does that make sense? I'm grateful to have learned that there can be room for both sad and happy + a myriad of other emotions, all at the same table.
50/50. Space for all the feelings.
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