(This is Jeff, and I’m hijacking this blog for a moment. Not that you wouldn’t have been able to tell that pretty quickly…)

The picture of Hillary above might be my favorite photo of her ever. It’s the moment she first saw Lacey. Sounds strange, since she’s in scrubs, hooked up to an IV, has a cannula in her nose and is pretty doped up. But it’s her face, and the look in her eyes. I’ve seen that look a lot over the 26 (!) years we’ve known each other, but I think this the is one of the few times I’ve ever caught it on camera.

She has the deepest of love in her eyes for her new daughter, and the most gentle touch as she’s reaching out to touch her for the first time. It just gets me. This is the Hillary I know.

Tomorrow is her birthday, Sunday is Mother’s Day, and on May 20 we celebrate our 20th (!) anniversary. She’s not going to like it, but I just wanted to take a brief moment to publicly celebrate my wife. (You know what they say about asking for forgiveness instead of permission.)

Hillary has been through a lot. She has lived through the sudden passing of her mother. The “long goodbye” and passing of her dad from Alzheimer’s Disease. The  birth of a son with an unexpected and rare genetic disorder. And thirteen years later the birth of a beautiful little girl with the same.

Ordinary people have been broken by much less than this. I’ve seen her pain, but she has never been broken. She is a fierce fighter, because she knows that Bennett and Lacey, and I, need her. She has supernatural and unconditional love for us. And she has extraordinary compassion and love for practically everyone she comes into contact with.

I hope you’ll say a prayer that she can find the time and energy to write on this blog, because her story is incredible and deserves to be told. Of course, she’ll tell you it’s our story, or the story of God’s path for her and us.

But that’s merely semantics. I’m just thankful to be part of the same story as Hillary.

Recently we were humbled and grateful to be asked by a close family friend to be a part of her high school project. We met Skylar Kaplan through Alpharetta youth football several years ago when Jeff coached her younger brother, Mason. Over the course of three years of football we grew close to the Kaplan family, and have been fortunate to be able to stay in touch with them.

Below is a copy of an email Skylar is sending out describing her project – a cookbook she is creating and selling to support Joubert Syndrome research. We encourage you to support her (and in turn support the Joubert Foundation) not because of us, but because the world simply needs more people with hearts like Skylar Kaplan.

And besides, where else can you get a great recipe book for only $8?

Hello, my name is Skylar Kaplan. I am a sophomore at Alpharetta High School in Georgia. Recently, my class has been assigned a project in my TAG Honors Literature Class called the 20 Time Project. In this project we are allowed to choose anything to devote our time to every other Friday. I have chosen to make a cookbook, RECIPEASY. But that is not all. I have also decided that I would sell this cookbook to help raise money for a charity in support of Joubert Syndrome, the Joubert Foundation. Joubert Syndrome is a rare brain malformation characterized by underdeveloped balance, coordination, muscle tone and intellectual disabilities of varying degrees.

I was inspired to raise money for this charity because I met the Key family. Hillary and Jeff Key have two children, Bennett and Lacey, with Joubert Syndrome. I have gotten the chance to know them and they have taught me what strength and courage are. Bennett is a girl-crazy WWE fan, and a football-loving teenage boy. Lacey is a beautiful little girl who is growing up so fast. This cookbook is a collection of recipes from family and friends. It is more than just a recipe book, it is a collection of memories and histories of these families that have all connected to me in some way.

I invite you to join me in my experience by purchasing this cookbook. However, by purchasing the book for only $8, you get more than recipes. You get to positively affect the lives of others. 100% of the profits from each sale is given to support research being conducted to determine how to eliminate Joubert Syndrome and to help those currently with Joubert Syndrome. From sushi rice to baked spaghetti to chocolate bundt cake, I gathered over 50 easy-to-make recipes from the family members and friends that helped shape my life. Be a part of something special and fun. It’s not just easy, it’s RECIPEASY!

If you would like to purchase a cookbook please email me at skylarnk@gmail.com with how many you would like to purchase by May 2. All checks and cash can be payable to me, Skylar Kaplan, and sent to 535 Tatum Drive, Alpharetta, GA 30022. Also, please forward this email to anyone that you feel would be interested in purchasing this special cookbook. Thank you in advance for your support.

Thank you, Skylar Kaplan

I am not a crier. It takes a lot for me to push out a tear.  And it’s not because I’m tough. It’s an unhealthy, self-protecting mechanism that has developed over the years. When I do cry, I am so very relieved to know I am, in fact human. That said, there are certain memories that make me tear up every time.

Here is one. (Be forewarned, it’s my personal opinion that people overuse the words blessed and amazing, so please forgive me because I am about to do just that.)

Our family has been blessed to have friends who have chosen to join our roller coaster journey, to pick us up and push us forward in the dips and to celebrate hard with us on the peaks. This story involves one such amazing friend. I’ll call her “K”.

K has four children, three around Bennett’s age. We met at church when Bennett and her oldest were babies. She has been along for the crazy Key ride ever since.

When Bennett was around five years old, K’s children asked her about heaven. She explained how God loves us so much that He sent Jesus to rescue us and make a way for us to be with him in heaven. She told them how there is no sickness, pain or death in heaven. This is good news, and a lot to take in (for all of us), so K used their friend Bennett to explain further.

She told them that in heaven Bennett will be able to walk and run and jump. He will be able to speak clearly and do the things his body will not allow here. To her surprise, the kids cheered and jumped and DANCED around, because they were so happy for Bennett.

Picturing the pure selfless joy of that moment gives me a teary smile and thankful pause.

I am thankful for friends pick us up, push us forward and celebrate with us. I am also thankful for the gift of Bennett and his sister, Lacey, who make both heaven and the days here worth celebrating.

And I am thankful for the pure selfless love we celebrate today.

Happy Easter.

July 16, 2005 – The American Idol concert at Gwinnett Center with Mom. Those who know Bennett know his first love is music. When he was little, nothing (and I mean NOTHING) got him more excited than American Idol. This was his first “real” concert, and happened to be the year that Carrie Underwood won.

Note: Mom made Bennett the shirt he is wearing – “American Idol 2018”. Hard to believe how close that actually is now.

“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.