About a year ago is when we learned about the possibility of Johnny having Down syndrome. It all started with a simple 12 week visit to my Ob and an ultrasound that came back with a pretty extreme number associated with Ds. The nuchal translucency was well above the normal range and paired with my blood test results, we were given that one in five. I remember so much pain and worry associated with this time.
Those words feel so entirely inadequate to describe exactly how I felt. I was devastated thinking that I would never be in a "situation" like this. Matt and I frequently joked that the only reason we did the screening was to get the ultrasound because we loved the time seeing our baby. I felt loss. Loss for myself, loss for my husband, loss for my girls, and loss for this baby I was carrying. I felt confusion on why it was happening to me, why God was letting this strife into my life. I mourned what I viewed as perfection and ideal, watching my worldview coming shattering down all around me. It hurt so much more than I can say. I couldn't breathe, I had small panic attacks, I cried often, I withdrew, only able to think about and talk about this looming diagnosis. I said over and over again that I didn't want this and shook my head as if to physically deny it's plausibility.
At the same time though, I immediately grew more fiercely protective of Baby Raptor. I grew confident in my ability alone to care for this child. I felt that deep set internal, rumble of primitive ownership over my responsibility to my baby. While I wanted to reject this diagnosis, I also wanted to love this baby for who they were, and deeply regretted every moment of wishing any part of him away. I didn't know what I wanted, but we dealt with our feelings, fueling the positive ones and addressing each of the negative ones in our own time. We recognize these feelings when they come up again because we were able to deal with them slowly.
I can see why people don't find out. As scared and worried as I was, I found comfort in our knowledge. But there is so little that the test actually tells us. It didn't tell us that Johnny would hate peas. It didn't tell us that his hair would grow longer in the middle to make styling a "faux-hawk" all the easier. It didn't tell us that he would let us rock him to sleep at 7 months old and cuddle onto our chests like a newborn. It didn't tell us that he would have full lips and long eyelashes. It didn't tell us that he would love to sing "The Itsy Bitsy Spider". It didn't tell us that he would love to bounce on our legs. It didn't tell us everything about him. So everything we deal with now in relation to Ds is so much easier because we know him, who he is, while we deal with the struggle. We know that the hardships are worth it because of all the wonderful things he brings to our life. When you find out at 12 weeks that your child may have a chromosomal abnormality, you don't even get comforting kicks to assure you that things will be ok. The hugs and the snuggles make a bad doctor appointment so much better.
Would I still test? Yes. I needed to go through all of that and be removed from it before my labor and delivery. I could not have been in a better place to meet my son than I was on October 31st. I don't know how women and men deal with all of the emotions of meeting their child and dealing with a surprise diagnosis all at the same time. It is not for Matt and I. We are so thankful we found out that he has an extra chromosome beforehand and we contend that it probably saved his life because we had extra precautions in place for an extra doctor appointment to check on him. It is hard to tell someone what to do in this case though. There are negatives and positives to both. There is a lot more worry ahead of time, but you can deal with the negative emotions over time. There is more enjoying the pregnancy and having an actual child if you wait, but you are kind of slammed with all of the testing and dealing with things at once. It is a lot to think about.
The testing didn't tell us everything about what his future holds. That is for him to decide...and we are fortunate enough to be along for the ride.