And Then the Wondering Sets In

It’s no surprise This Is Us is sweeping the nation and taking us on an emotional ride every Tuesday night. If it’s not one episode that moves you to tears, it’s the next. I can say with 100% certainty that anyone who watches this well-crafted show will relate to something they cover.

I’ve never had a miscarriage. I know countless women in my life who have experienced this devastating kind of loss. They are warriors exuding the kind of strength no one wants to find out exists within them. This week’s episode invited us in to a deeply personal and painful look at a character’s experience with miscarriage. And, although I’ve never lost a baby, I have experienced grieving the loss of the baby I thought I was going to have. I do not mean to write this to include myself in the group of women who’ve experienced miscarriage, but I write this to share how I can relate to the character’s emotions and the idea of feeling like I did something wrong to cause Reece’s diagnosis. (Many know my story, but for those who do not, you may want to start here.) Take a moment to watch a clip from this week's episode.

And then the wondering sets in…

“Did I do this? Did I do something wrong? Did I sleep on the wrong side? Should I have gone on that walk?” Much like the show portrayed, these are like the questions that took up residence in my mind when Reece was born. Questions that haunted me day after day, night after night…until a Geneticist gave me a valuable piece of information. He explained that Down syndrome is not caused by anything done during pregnancy; rather it is caused by a genetic abnormality which results in an extra (or third) copy of the 21^st chromosome. The amount of relief that rushed in after hearing someone let me off the hook from the guilt I had been carrying was immeasurable.

One of the hardest parts of receiving Reece’s diagnosis was that I was told before I had the chance to hold him for the first time. This is one of the many things I wish I could educate medical professionals about when it comes to delivering an unexpected diagnosis. Because hearing that the child you thought you were going to have is not the child you actually have is a level of disappointment you don’t realize is possible until you experience something like that. And, in me, it caused an almost immediate detachment from Reece when I should have been bonding with him. The line in this week’s episode that vividly brought me back to that day… “I felt like if I didn’t hold him, somehow it would lessen the pain.” Maybe that’s the notion that doctors and nurses operate under. That maybe if the news is delivered before a parent falls in love with their newborn baby while holding them, it will somehow lessen the pain of hearing the news. I cannot believe that to be true. Because at least if I had the chance to hold Reece first, it would have begun the bonding experience every new mom deserves to experience.

And, how I can so relate to the character's grocery store meltdown. "Tell her I want what I came for. It's not fair." I'd be lying if I said I didn't wallow in the "it's not fair" moment when Reece was born. And by moment, I mean months. Months of feeling like I didn't get what I signed up for. Months of my mind jumping to the worst scenarios of what life with a child with special needs looks like. Months of wishing I could rewind to the moments before Reece was born so I could remember life before disappointment. That should not be read as Reece being a disappointment to me, rather the unexpected diagnosis. That's what grief does to you. But although grief can hit you at any time, it should be a place you walk through, not a place you stay in.

So why write this now? Why dust off this blog after years of silence? Because I feel like there are others out there, like me, who need to be let off the hook. Those who need to hear the answers to “Did I do this? Did I do something wrong?” And just like the character’s mom tells her “this wasn’t your fault”…that’s what I want women to hear and let settle into their spirit. Let go of the guilt, shame, wondering and let them be replaced with the grace you deserve to walk in instead. I’m not saying getting to this place is easy. In fact, it may be the hardest journey of discovery you will ever make. And, I did not arrive here on my own strength. That strength comes from God who lovingly and patiently carried me to this place. Please know there is room here for you too, you just have to take the first step. 

Look At Us

Before you read this blog title and think this is a plea for attention, let me attempt to change your mind. In a recent conversation with my brother-in-law, he told me about how he and his family were out to dinner and he happened to notice a family with a little boy with Down syndrome around the same age as Reece. He watched the parents interact with their son and said he could see how much they loved him just by observing them in an everyday setting like dinner out. When they were leaving, he stopped by their table to say hello and was able to connect with them by sharing about Reece. He told me that he may not have ever noticed them, but having Reece in his life has made him more aware of others with DS.

Isn’t it interesting how that works? You may never be aware of something until you’re exposed to it. That’s how it is with DS. Before having Reece, I didn’t know a single person with DS. Sure I’d see families around, but it was a very rare occasion, and of course I knew of Corky from Life Goes On! But I’d never had a real encounter. It’s amazing how many families I see now. My eyes are open to a world that has always been around me, but I never had a reason to focus my vision on it.

And it makes me wonder, what do others see when they look at us? What are we showing the world when we are out in the community? What I want the world to see is the same unconditional love Reece shows to those around him.

 

I want the world to see a little boy who can do anything his peers can do, just on his own timeline.

 

 

 

 

I want the world to see two parents who are dreaming big for their little boy.

 

 

I want the world to see that DS is not as scary as it seems.

 

So, look at us! Future mothers and fathers of children with DS, LOOK AT US! Look and see that these children are incredible little humans who are worthy of the life you can give them. Look at us and see that life with DS is beautiful. Maybe if more people look at our family showing love to Reece, then maybe the fear of DS can be eliminated.

 

Today, on World Down Syndrome Day, we celebrate our loved ones with DS. We celebrate the six million parents who said yes to life and we keep on educating until the 92% termination rate dwindles down to zero. I won’t stop waving this flag, not today…not ever.