What If We Knew...

Many people have asked me if we tested for Down syndrome before Ruby was born. We opted to not have any of the prenatal tests: I thought about doing the screening, but quickly realized that it was not totally accurate and we knew it wouldn't change the outcome anyway.

With Eli, we knew about his clubfeet at 20wks, and it helped us to research and prepare for doctors and casting. It was a huge blessing for us to know ahead of time so that we could hit the ground running with his treatment. Not that all clubfeet are the same, but the initial protocol for our chosen path of correction is pretty straight forward for all clubfeet. I am so thankful we did not know about Ruby's diagnosis ahead of time for the pretty much the same reason. Her diagnosis does not have a 'standard' treatment plan, nor does it have typical presentation. Had we known, we would not have chosen a different outcome for her, but the stress endured would have been bad for my pregnancy and all for naught, as we wouldn't have known what *exactly* we would be dealing with. We still don't. Just like with Eli and Maddux, we have to watch our kids develop, one milestone at a time. We know of things Ruby will likely struggle with, but there was nothing we could have done while she was in utero to help her during her first few years.

When we first found out about Ruby's extra chromosome, one of the main things that kept me strong, that kept me joyful, that kept me from giving in to the fear was having Ruby physically present with me. Her soft skin, her baby smell, her little fingers and toes, her big eyes....all of those things made it much easier to focus on the baby and not the diagnosis. Had we opted for prenatal testing to determine if she may have Down syndrome ahead of time, I think everything would have been so different, and not for the better. I think the diagnosis would have overshadowed the baby. I think we could have easily over worried, over stressed, over planned, over researched. All for scenarios that didn't end up applying to Ruby. I think I could have succumbed more to grieving for the baby I'd planned on having. I could have spent days, weeks, months disconnected from my kids and husband, struggling with fear and sadness...time wasted. (That is not to say I have not grieved, or struggled, but I think it has come and GONE in smaller chunks here and there because every time I hold Ruby, the joy outweighs everything.)

Something we were not afforded (outside of the first hour) but we tried to give to some friends and family was the opportunity to see Ruby via pictures and videos, or to meet Ruby and get to know her before knowing her diagnosis. Our intention with that was to establish a connection, a familiarity, a bond, without anything else getting in the way. And when I say 'anything else', I mean the baggage most of us have tied to so many medical conditions or diagnoses. I had it...I still have it. When I heard the words "Down syndrome" certain thing immediately popped into my head: physical characteristics, delays, handicaps. Because it is something that I had no prior personal connection to, stereotypes are all I had to base my reaction on. Without that prior experience, we are all guilty of that when we see or hear about a particular condition. I think it's why termination rates are so high in pregnancies where DS or other abnormalities are detected. Sky high, actually. I can't help but grieve for those parents because of the amazing children they are missing out on due to fear. Because of ignorance. While termination would not have been our choice, the fear and ignorance would have still been there. And they would have been a much bigger part of my reaction to Ruby had I known about her DS before she was born. They may have gotten in the way of me really seeing her when she was born. Of course, my 'vision' was still clouded in the hospital.....I still had many dark moments of fear and ignorance. But there is something about holding a tiny squirming ball of warmth that softens any news.

Thankfully, I've been able to learn more about Ruby AND her diagnosis one step at a time, all of the while holding my baby in my arms. Realizing, as I read about some possible outcomes, that she is Ruby above all else. Just as Eli's clubfeet are just one thing that makes him up, Ruby's DS is just one of the many things that make her who she is.