A Little Story About a Little Chromosome

My Story

Everything was going according to my plans. Career? Check. Homeowner? Check. Fabulous husband? Check. Great relationship with God? Here’s where it got tricky. I was raised in a devoutly religious home and just sort of assumed I was in good standing on this one based on my Church of Christ heritage. I was wrong, and God knew it. Notice how I didn’t add the characteristic of “Fabulous children?” with the subsequent “Check.” For me, this is where the road got rocky and God began intervening in my life in beautiful ways (well, this is where I began to notice, I think He’s always intervened). I always assumed that if one worked hard, one would achieve all of their dreams. God challenged this assumption of mine when we couldn’t seem to conceive our first child. When we finally did conceive, we rejoiced and began concocting plans for our first born…assuming he would have the standard 46 chromosomes that most of us have. God challenged this assumption as well by blessing us with Everett Michael Neil on May 27th, 2013. We learned at 9:28 am that morning (moments after he was born), that he had Down syndrome. And at that very moment, every plan I had ever planned and every dream I had ever dreamed about my future children crumbled to pieces. A line was drawn in the sand that Memorial Day morning. There is “Cara” before Everett was born and diagnosed. And there’s “Cara” now.

The new “Cara” is the author of this blog. And I understand now (as much as one can truly understand), that His plans and dreams are greater than mine. Once I moved past the shock and hurt associated with watching one’s plans and dreams crumble before their very eyes, I began to see the world a little differently. All the while, I had been given this very special gift in the form of Everett and I knew, even in the early days, that God had chosen me. Out of all the parents in the world, he chose me to be Everett’s mama. He could’ve chosen any one of you reading this blog, but he chose me instead. I’ll never know exactly why but I tend to theorize that it’s because I wasn’t as close to Him as I thought I was. And because He knew I needed to change. Before Everett was born I strove for perfection in every arena in my life and for the most part I expected perfection from myself and from others. But after Everett was born I realized that he wasn’t going to be like all the other kids and that “perfect” standard I was holding him to before he was even born, was ridiculous. And as the world began to respond to Everett, sometimes in very harsh ways, I began to realize that in fact – no one is perfect. We’re all on some sort of a spectrum. And to hold anyone to that standard of perfection is nonsense.

I frequently joke that everyone needs a pair of “Everett glasses.” God prescribed me my pair, but perhaps by reading this blog you’ll get a glimpse of the world I see. The world God called me to see. And in this world, no one is perfect nor are they held to any standard of perfection. On the contrary, this blog is all about embracing and celebrating the imperfect moments that punctuate this journey God has called me to travel on. I often get a lot of praise for being a “great” and “perfect” mama because I’m raising a child with some unique concerns. But I’m far from perfect and I rarely question Everett’s abilities and talents, but rather, my own as I attempt to extend and push my faith, embrace my role as wife & teammate, raise two boys (one a threenager and another embarking on his terrible twos), and profess and pontificate as a tenure-track scholar/teacher. I’m not going to sugarcoat it for those of you attempting to do something similar. It’s not for the faint of heart. But I take solace daily in knowing, that through Him, we are all more than able.

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen.” – Ephesians 3:20 – 21

My Confessions

Confessions-of-a-rockin-mom were designed to connect with three primary audiences: 1) Current parents with children with DS who share similar experiences to ours, as well as those who encountered different experiences (e.g. a prenatal diagnosis). I think it’s important for everyone in the DS community to understand that each of our stories is unique, and respect and learn from these different stories. 2) New and expecting parents of babies with DS. In the early days, I had a lot of unwarranted fears and wasted a lot of time fretting over things that were out of my control. I wish I would have worried less and just enjoyed my new baby and my new role as a parent. I’m hopeful by dispelling a lot of the fears I had early on, I can encourage new moms and dads to worry less and enjoy the moment. 3) People who do not have a lot of exposure to differently-abled persons. This includes healthcare practitioners who deliver diagnoses, but have minimal exposure to the children they diagnose beyond the diagnosis. Perhaps by altering their perspectives, we can then begin to alter the overarching narrative of Down syndrome. So here are my “Confessions.” As you will read, some of the fears I had in the early days were warranted. But most were not, and I think by reading through these sorted tales of #lifewithDS you’ll find that being the parent of a child with Down syndrome is just like….being a parent.