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What One Can Be, One Must Be

I still remember my excitement when my wife Andrea and I found out we were expecting our second child. After having our daughter  Brynlee, we were thrilled to welcome a son into our little family. As the due date drew nearer and Andrea became increasingly more uncomfortable in the July heat, we decided to move into our first home.

Before this, we had been living in my in-law’s basement so we could save up money to purchase a home of our own. And even though Andrea was far enough in her pregnancy the baby could come any day, we were too excited to wait until after the baby came to move into our new home. After a long day of moving, we stood together inside our home excited about the many memories we would make there. 

Exhausted but deeply grateful, we decided to settle down and get some sleep. After what felt like only a couple of hours I was woken up by Andrea telling me calmly but firmly that it was time, our baby was coming. I jumped out of bed delirious and exhausted I ran frantically around the house trying to find all the stuff we needed and then we were off to the hospital. And after a long and intense labor, our beautiful baby boy Nash was born. 

ENVISIONING THE FUTURE

I remember being so excited and filled with love for my new child. I looked at him, counted his toes and fingers to make sure they were all there, and thought about all the amazing experiences I would have with him throughout our life together. I pictured all of the mountains we would climb and the baseball we would play. I imagined what it would be like to watch Nash play in the state championship game for his high school team baseball team and then go on to play in college. I saw Nash grow up get married and then become a dad. Seeing such an amazing life for my son filled me with joy and excitement.

Then in the hospital, I noticed the doctors and nurses cleaning up Nash began to whisper amongst each other. They began pinching his neck and checking his feet and I saw a concerned look fall onto their faces. After watching them for some time, the doctor finally walked over to me and said that they thought Nash might have Down syndrome. I remember standing there shocked and confused. I didn’t know what to think, I didn’t know what to do, this wasn’t something I had prepared myself for. 

My shock and confusion quickly turned to sadness. All the experiences I had envisioned for my son throughout his life were suddenly unattainable. I didn’t know what his life was going to be, I didn’t know who he was going to become, and I was scared. I then realized that I would have to break this news to my wife. 

I walked over to the hospital bed Andrea was lying in and through tears I told her that the doctors thought Nash had Down syndrome. I remember her looking at me when I said it, then she looked down for a split second then looked right back at me and said, “Great! Can I hold my son?” She didn’t seem worried about the life Nash would live, she just loved her son and she wanted to hold him. And no medical diagnosis was going to change that.

UNDERSTANDING MY SON’S DIAGNOSIS

I think there are many of us who upon receiving the news that their child has Down syndrome get scared and like me, switch into defense mode. At the time I didn’t know 100% what a Down syndrome diagnosis meant, but I knew I was going to protect my son no matter what. It’s ok to be scared, or overwhelmed, or even sad. This is life-changing news that nobody is ready to receive. But what’s important is that through the feelings of fear, overwhelm, and sadness, we need to be like my amazing wife and love our children no matter what.

As time went on I noticed my perception shifting from seeing my son’s diagnosis as a tragedy to viewing it as a personal call to action. I was going to work as hard as I could to secure the best possible life for Nash. I wanted him to experience all that he was capable of experiencing with as little hardship as possible.

Over the years as Nash grew older, I became a protector for Nash. I was always willing to jump in when I thought he needed help or speak up for him when I felt like he needed a voice. I loved my son and I wanted to protect him. But it wasn’t for a few more years that I started to realize that I was maybe being a little too protective.

LEARNING LIFE LESSONS FROM “FINDING NEMO”

The movie Finding Nemo quickly became Nash and  Brynlee’s favorite movie. They would watch it over and over again to the point where I could recite the entire movie from memory because I have watched it with them dozens of times. Finding Nemo is a story about a clownfish named Marlin who is a well intentioned, but often  over-protective father to his son Nemo. One day Nemo gets lost and Marlin has to go on a journey to rescue his son from the danger of the open sea. I had always thought this movie was cute and funny but I never fully understood the meaning behind the story until Nash turned 14. 

I participate in the young men’s program at my local church. As part of the program, we take the young men aged 14-17 in our congregation on a week-long high adventure trip. This is a trip I always looked forward to participating in. It has always been fun for me to see these young men grow and experience something they might not have ever experienced before. But when Nash turned 14 I started to wonder if he would be able to participate.

That year we had planned to go on a backpacking trip through the  Wyoming mountains. This trip was going to be a long 10+ mile hike followed by four days of camping and then a 10+ mile hike out. I deliberated whether Nash should participate. Though passionate about going himself, I worried for his safety and about holding back the group. After discussing it with my wife, the other church leaders, and the young men that were going on the trip, we ultimately decided we were going to take Nash to experience this high adventure trip.

The trip turned out to be harder than any of us anticipated. The hike in was taking a lot longer than any of us planned and Nash and the other boys were quickly becoming tired. However, through determination and the help of the other amazing young men, we pushed through and made it to our camp. The next few days were filled with countless amazing experiences and opportunities for Nash and really opened my eyes to how strong my son was.

On the drive home after the trip, scenes from Finding Nemo suddenly took on new meaning for me. I had only then realized what the movie was actually about. It was about me and my experiences with my son Nash. I realized I had behaved just like Marlin, an overprotective father overly focused on protecting my “disabled” son and I deprived him of chances to show me and others what he could do. 

Throughout his life, I had always made excuses to justify shielding him instead of giving him space to grow. It took seeing Nash push himself to his absolute limit, refusing to quit despite the enormous difficulty, for me to truly grasp his immense inner strength and courage. My perspective forever changed, and I committed to Nash and myself that day that I would help him live up to his potential rather than shield him from it.

TRANSFORMING DISABILITIES INTO SPECIAL ABILITIES

The world calls our children special needs. They call them disabled. But let me share that my experience with Nash has been far from someone who is disabled, far from someone who is special needs. 

Sure, Nash will probably never drive a car, or pass a college math class. But where it really counts, where it matters the most, in being able to be kind, loving, and help other people become who they are supposed to become in and through the service of other people, Nash has a very, very special ability. 

And I know from firsthand experience this is not exclusive to Nash. And I would also say this is not exclusive to Down syndrome. Each of our loved ones in their own special way has a special ability to allow us to become who we’re supposed to be and become our best selves when we give them the opportunity to be able to do so and allow them to get outside of their comfort zone.

A quote I love more than anything says, “What one can be, one must be.” And that’s what I believe our responsibility is as caretakers, parents, and families of individuals entrusted with this special ability. It’s up to us to help and empower them to sing that song that they are meant to sing.

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