“Why are you so upset?” Bennett asked, looking back and forth from Jeff’s face to mine. “I thought you were going to say you had a miscarriage.”

Jeff and I looked at each other, then he broke the silence.

“Bennett, you always know what to say, buddy.”

But we were upset. How could we explain our obvious pained expressions to our son? How would we explain that we were crushed by the news we had received hours earlier? The perinatologist had said it while looking at my ultrasound during a checkup – “I don’t like what I see.”

And there it was, up on screen. Bennett’s baby sister had a brain malformation, the same as his – Joubert Syndrome. Joubert Syndrome again.

We had been on this journey for nearly 13 years. The realities of it had not just reached out and struck us from an ultrasound, they were strangling us. How would I explain our pain without affecting how he sees himself?

No one is perfect, but in our biased estimation, Bennett is pretty close. He loves big. He loves God though he is wise enough to question. He loves people without limit, never judging them, though he is keenly aware of misgivings. And at 12, he had braved challenges that would topple most men.

So, Bennett, fresh off the school bus, still in his power chair, was staring up at me, waiting for an answer to his question. I grabbed a stool and sat in front of him.

How would I hold myself together? I knew better than to think I could, so I said a quick prayer, and started with what he already knew. It went something like this.

“You know how you are awesome, and that you make our day every day? And that You are a joy to us, and we love you so very much? Do you remember how we have told you about the problems you had breathing as a baby? And you understand the challenges that can come with JS. We are not upset about who she is. We love her already. We are upset about her medically. Does that make sense?”

Thankfully it did, I imagine it made sense to him in a deeper way than we will ever understand. He had that pensive look on his face he gets when he is processing something important.

So I went into the family room to do something – what, I don’t remember. I was in a fog that would take some time to come out of. After a moment, Bennett followed.

“I’m not upset,” he said.

“Ok. Why not?”

“Because she’s going to be like me.”

She was, in fact, an answer to Bennett’s prayers. He had prayed persistently for a sibling. Later during my pregnancy, he would add to a pre-meal blessing, “And God, heal the baby with an awesome life.”

So we decided to be like Bennett, and pray for God to heal the baby with an awesome life.

We knew, that no matter what, she would be awesome. We just wanted her to breathe, to live, and to know how much we love her.

We know what some of you are thinking – oh great, ANOTHER blog.

Fair enough, but bear with us. This has actually been in the works (read: in our heads) for a few years. We initially had an idea for a blog called “The Bennett Show” designed to be an outlet for Bennett to express his creativity, and for us to tell stories about our journey with a son with special needs, specifically Joubert Syndrome.

It’s not like we felt we were solely unique in raising a child with special needs. But at the same time, we knew, and still know, each journey is as unique as the individual. For us it had been quite a “show”. A tearful joyride of a journey, a show worth sharing. A show where tears remain, but ultimately joy wins.

To know Bennett is to understand and expect the previous statement. He was and is “the incomparable Bennett Key ladies and gentleman” as he may so humbly introduce himself. So, we wanted to pull back the curtain on a life unique to most, that presents the commonality of the gift of our own uniqueness. A life full of surprises.

Subsequently, a little over two years ago, a funny thing happened – Lacey Faith.

Lacey arrived 13 years after her brother and was a huge surprise (which is a colossal understatement), and was also born with Joubert Syndrome. Unlike with Bennett, and due to more advanced pre-natal testing, we knew that she was going to be born with JS.

We lived through a terrifying, happy, tearful, exciting, depressing, exhilarating pregnancy in which we chose to focus on loving and preparing each other. We had no idea what to expect from, or for, our little girl. We just knew she was ours and we were going to love her no matter what. She was no accident.

Two years later here we are. We wouldn’t dare tell you this road has been easy, it most certainly has not. But make no mistake, we are thrilled to be parenting two of the most charismatic and enjoyable children you could ever imagine.

Bennett, Jeff and I all feel led to share some stories about how we got here, and how we are moving forward with our lives one day, one step, one crawl at the time. And once Lacey gets a little older we hope she will feel led to contribute as well. In the meantime we’ll just let her contribute with her smile.

We honestly don’t know exactly where this site is going to take us. But we definitely knew if we tried to sit down and map out a detailed plan we would never get off the ground. So this is where we begin.

There are a few things we want you to know before we embark upon this journey. While this blog is BY us, we don’t necessarily want it to be all ABOUT us. Sure, we’re going to occasionally (OK, constantly) boast about our kids’ accomplishments or post a photo or video showing something funny or cute they’ve done.

But more importantly, our goal is to help you see kids and adults with disabilities as more than a disorder, disease, or condition, to see the “who” not the “what”, to see “us” not “them”. After all, they are like you. You are like them. We all want to love and be loved. We have hopes and dreams and sometimes similar aspirations.

As parents we see that our kids are often misunderstood, and intentionally or unintentionally excluded, because they are different. We’re here to try to correct that in any small way we can, through our story, through God’s grace.

Our Bennett and Lacey are regular and rare. Rare for who they are, not because they share a diagnosis with a relative few worldwide. Regular, because they share a uniqueness with everyone born, each created to be the one and only them, with beauty and purpose.

Each fearfully and wonderfully made.