A Moment Like This

 In September 2002, Kelly Clarkson had won American Idol. I was a faithful watcher and voter...probably from my pink Motorola Razr. Ha. Her debut song was, "A Moment Like This".  I was pregnant with Cody. He was due on Christmas Day, 2002. 

However, by this point, we were not entirely sure what life beyond Christmas Day 2002 would look like. There were many uncertainties. What had started as an anxious and exciting moment (a funny one at that) to find out if were having a boy or a girl, turned into a moment engraved into my memory so deeply that amnesia couldn't erase it. We began to have ultrasounds via satellite with Arkansas Children's Hospital. We had an amniocentesis. We learned he would have bilateral clubfeet. There were questions regarding fluid on his brain and ventricles in his heart. There were moments when doctors let us know they were not sure if Cody would live to term and if he did live to term, if he would live beyond infancy. 

There was a moment where abortion was discussed.

There was a moment where Derrick and his dad went and cut wood from sun up until sun down just to try and process all of these moments.

There were many moments where I shut off that pink Motorola Razr, sobbed and drove dirt roads until my gas light came on so I could process these moments.

And in those moments, there was a LOT of arguing and bartering with God. Surrendering. 

But, also in those moments, some incredible bonds were formed with our doctors, nurses, and radiologists. 

Our tribe began.

My wise and kind OB spoke to me on the phone during an appointment he could not attend and asked me such an important question that I think about often: "What are you going to do with this information?" I told him I just wanted to be prepared so I could take the very best care of him that I could.

Fast forward to December 17th, 2002 and Cody Ryan Jensen made a grand entrance at Willow Creek Women's Hospital at 9:04pm weighing 8 pounds and 4 ounces. The fluid around his brain was miraculously gone. His heart had a murmur, but otherwise, perfect. We had a plan for his feet. We had a God given miracle. 

And then in a moment, things changed. He needed to be transported to the NICU, which at this point was at Northwest Medical Center in Springdale, where he would later be diagnosed with a severe case of Hirschsprung's Disease and eventually MED13L. Neither had a single, solitary thing to do with fluid on the brain or his heart or his feet. It was something completely different and could not be detected by amnio. I was getting a much needed shower when they brought my baby into the room in a plastic box for me to say my goodbyes as they transported him to Springdale via ambulance. 

That moment. 

That was the beginning of many "We will take good care of him, Mom" moments as they would wheel my baby away.

And now, tomorrow morning I will hear the University of Arkansas say, "We will take good care of him, Mom."

Cody stayed in the NICU until New Year's Eve. His first Christmas. He endured his first of eleven surgeries in that time...six of which were in his first nine months of life. 

I was driving to the NICU to spend the day with Cody. It was my first time going alone as Derrick had to go back to work. Kelly Clarkson's familiar voice came over the radio...

What if I told you this was all meant to be?

Would you believe me?

Would you agree?

I have never sobbed so hard in my stinking life. I relive that moment every single time I hear the song. No matter what. Even after all of these years. I am in that white Camry, sobbing as I pull into the hospital parking garage. I can even smell the NICU soap that I had to scrub up with before entering. I know it's mostly a love song, but I hear it so differently. From that moment on it became a song I sneak off and take a drive and turn it up as loud as my radio will go and just sob. Every milestone. Every hard moment. Every happy moment. I play that song again and again. Me and Kelly Clarkson...crying it out.

Thankful to have these moments. All of them.

"A moment like this. Some people wait a lifetime. Some people search forever. For that one special kiss. Oh, I can't believe it's happening to me. Some people wait a lifetime for a moment like this."

We fast forward 18 years and WOW has it been a ride. So many peaks and so many valleys. "Everything changes, but beauty remains. Something so tender, I can't explain."

I cranked that song when Cody received his acceptance letter to the U of A. And I have cranked it a lot these last few days. 

People keep asking me how I'm doing. And that's hard to explain. I am ELATED. I am THANKFUL. I am HOPEFUL. I am EMOTIONAL. I am so, so, so EXCITED for HIM. And I am a little terrified. But, I have PEACE. I don't know what the next four years will hold for Cody. Or the next 3 months, for that matter. But I am proud of him for taking this step. I am proud of him for ALWAYS going after what he desires. He puts in the work.

I am so thankful for him to have the opportunity to LAUNCH. To go and grow and experience LIFE as a young adult and learn what he has inside to offer this world. The way it is supposed to be. I wish this opportunity for every young adult who is differently-abled. 

To fail and get back up and keep trucking. To cling to God and know that He will carry him through. 

To go and make the world a better and kinder place. To have the opportunities to explore and gain skills and independence that I cannot teach him at home. To go and snatch up that dream job. 

To let his light shine bright. 

I literally can't believe it's happening to {him}. This isn't just college. Without this program, Cody would be sitting at home growing more self-isolated than ever. My nightmare. His nightmare. This world can be hard and ugly. I have to know that he can take care of himself, give and receive grace, teach others and learn from others. He will be a wonderful contributing member of society. And moving up to The Hill is his launching pad. 

I am so thankful to the U of A. To the EMPOWER program. I am thankful Cody gets to have this moment. He deserves a moment like this. 

I have enjoyed these last few weeks with him. He spent his last night at home going to the BWHS game tonight because #SchoolSpiritNeverDies but we worshipped how God turns graves into gardens on the way home. Windows down, music up, like we always do. I'm going to miss doing that every day. Maybe Cooper will humor me once in a while. :)  My heart is torn in two, but it is not an even split. I am more thrilled and proud and excited for him than I am sad. I know it won't be easy for him. Great things never are. 

Please pray for Cody. Pray for authentic relationships to be formed. Pray for a bubble of protection around him. Pray that he settles in well and begins to find his place in this world. Please also pray for all of the EMPOWER students. 

And don't mind this mama, throwing it back to 2002, listening loud and crying those bittersweet tears. 

 

An Open Letter To The Kids That Called My Son A R*tard

On Saturday, we were riding a major high. Cody, my eldest son, had just been accepted to the University of Arkansas EMPOWER Program. Cody has been looking forward to college and becoming a Razorback for a while now. You see, the EMPOWER program is a four year, non degree program that focuses on academics, independent living, employment, social and leisure skills in a college setting with the goal of producing self-sufficient young adults. Cody wants to be a spirit coach's assistant, a teacher's aide, a physical therapist or maybe even a police officer. One thing is for sure, Cody has a servant's heart who loves the Lord and loves others wholeheartedly. There aren't many options available post high school for young adults who are differently-abled. There aren't many options available because of ignorance and lack of awareness. Some people do not presume competence. Some people fear those that are different. Some people do not even acknowledge Cody as a person worthy of respect. Worthy of great things. What I didn't realize was that his very own peers are some of those people. 

 
I could not imagine researching someone's phone number on the internet and calling them repeatedly and have the courage to say such horrific things about their child. You informed us that Cody was a r*tard. That he didn't look or act like he was 18. That you couldn't understand anything he said because he didn't speak well. 

Did you think about how that would make us feel? 

Did you feel proud of yourself? 

Do you think Cody's life is less valuable than yours? 

Do you feel entitled to belittle and bully someone? 

Did you feel big? 

Did you hang up the phone and pat yourself on the back? 

You said you were doing this for "entertainment"...were you entertained? 

When you went to bed that night, did you feel happy that you hurt someone else?

This wasn't just you. This was a group of yous. When one of you were interviewed by the dean about why you were doing this your answer was, "That kid just isn't normal. So we all started making fun of him." All. A good 15 kids. Maybe not each of you actively said horrendous things, but not one of you tried to stop it. 

Not one of you acted like men.

We thought it was over. But, no. You took to FaceTime on Tuesday night. We had just gotten home, high on a Wolverine win. You asked my husband if he was r*tarded also. You taunted us that we couldn't figure out who you were. You said that there were death threats against my son. You both went on for 7 minutes spewing hate and enjoying every second of it. But, you are just boys. You underestimated the power of a parent who is faced with hate against their child. I found you. And now your parents have learned about the entertainment you seek. 

Let me tell you a little bit about the young man you hate. 

When I was pregnant with Cody we were not sure that he would live to term. His birth was simply a miracle. We left the hospital without our 8 pound 4 ounce baby boy. He was admitted to the NICU and had the first of 11 surgeries at 3 days old. He spent is first Christmas in the NICU. We traveled hundreds of miles every week for years to seek treatment at hospitals for Hirschsprung's Disease and Clubfeet. For years we sought answers to our questions about his health. Cody didn't walk until he was two. All of the things that you take for granted in your life and feel you are entitled to, walking, talking, eating, friendships, academics and so much more, took HARD WORK and DETERMINATION on Cody's part. They didn't come naturally for him. He had to fight. He goes to school and then goes to therapy after school all in an attempt to be what you determine as worthy..."normal". But what I have learned this week is that I am THANKFUL Cody is nothing like you. If you are normal, then I want Cody to have nothing to do with normal. Because, you see, Cody would never find joy in hurting someone else. He has every right to be angry and sad. Life is HARD for Cody. And you don't make it any easier. But still, he manages to radiate joy and happiness. He loves everyone. He longs for authentic friendships. He knows what pain and sorrow is like. Yet, he chooses joy. Is he perfect? Of course, not. He is a teenager. Does he make mistakes? Sure. Are they intentional? Never. Does most of the ugly things he has learned come from "normal" teenagers? Yes. 

What baffles me is you KNOW he is different. You called him "so autistic"...yet you didn't chose to protect him. None of you did. Some how you think you are entitled to the internet and someone beneath you must be deserving of this hate. He's a nobody, right? Just some disabled person that was an easy target for some good laughs. Because you couldn't dare pick on someone your own size. 

I don't dare want to think about the others you have hurt. What if you go too far? What if your actions cause someone to hurt them self. Would you be proud? What if someone hurts you? Would you regret your actions? 

I go from angry to sad in a moment. As you can tell in my rambling here. You've rocked my world. But don't find satisfaction in that fact. Because what I have learned is that I have so much work to do. While there are so many incredible people in Cody's corner, there are still many of you out there. Those that seek to step on others in order to stand taller. Those that see Cody as less than. I am praying for you though. I am praying that God tugs on your heart as you lay down to sleep. I pray that your heart changes and you seek to protect those around you. To be the positive change we all want to see in the world. Most of all, I hope you look back on this moment when you become a dad and you're holding your entire world in your arms. 

Cody won't need to stand on anyone else to feel taller. Cody will stand tall on his own because he isn't afraid of hard work and because joy lives inside of him. Cody and all of the other Cody's out there are fearfully and wonderfully made. Just as you are. So do better. Be better. I know it's in you.

But from where I'm standing, Cody is more of a man than you are. Maybe he could teach you something about that.