A Life Made Meaningful

One of the most rewarding parts of being part of JourneyFEST is the stories of our children and the strength and determination of our parents. Here is one of my favorite stories of a life made meaningful and the love of a father.


A Life Made Meaningful


As a man, I had high expectations from those around me to be successful. I needed to have a great career, beautiful wife, good education. I needed a nice truck, camping gear organized in my garage, money in the bank, and a rugged toughness to make it through life. The center piece to the layout of my perfect man-existence were kids who were to grow up strong having a better life than I did. After getting married, I was well on my way. I was a hunting, mountain bike riding, poker-playing kind of a guy. My wife became pregnant with our first child, and we were ecstatic! We would dream of all the great things our kids would do. We day-dreamed about what they would look like, what kind of personality they would have, and what they would achieve in life. While we were in the middle of picking out baby room colors and planning a baby shower, we received the heartbreaking news that would drastically change our life course. We were deep into the pregnancy (30 weeks) before we had our first sonogram. The team took forever scanning and rescanning. Finally, a supervisor came into the room and said, “We aren’t seeing something we should see, and we need to send you to a specialist for a more detailed sonogram.” We walked out of that appointment thinking that the second visit would simply discredit this first conclusion, and we would go along with our perfect pregnancy. Unfortunately, the specialist confirmed the first sonogram and told us, “We are not seeing your daughter’s brain. She has profound hydrocephalus and most likely will be born with significant complications.” That was the longest 8 weeks of our life. We went for testing and sonograms every week. Every visit delivered worse results. Our daughter’s head was growing abnormally large, and there was absolutely nothing we could do about it. Thankfully, we were surrounded by a ton of friends and family members who supported us and prayed for our peace and healing. At 38 weeks, the doctor ordered a scheduled C-section, and our baby was born. It was bitter sweet (but mostly sweet). Our precious daughter, Kennady, was born, such a miracle to see, touch, and hold. On the other hand, she struggled for life with so many special needs. An MRI revealed that her condition was actually a lot worse than first diagnosed. Her condition was called Alobar Holoprosencephaly, meaning not only was there fluid on her brain (Hydrocephalus), but it had not properly divided into two halves. This meant that her life expectancy was 6-24 months. The doctors told us to “take her home and enjoy her” until she ultimately passed away. As I leaned against the wall in the hospital corridor that day, my eyes closed, and my head fell. Tears began to flow down my cheeks. The dreams of my life, my family, and my heritage were dying. There was a death in the hallway that day. Though my daughter was technically alive in the next room, the walls were closing in on me and my future. I remember telling my dad who was standing next to me, “This is not her fault. She didn’t do anything to deserve this. She won’t even know when people reject her.” Thoughts of the future were crushing me. How will I afford this? What does this mean for other kids? Was this genetic? What if she doesn’t die, and I’m taking care of my 50 year old daughter when I am 70? These thoughts were quickly strangling the life out of my hope. All the factors that determined my success as a man were being threatened. A couple of days after she was born while standing at her bedside in the NICU, I looked down and saw a doctor’s handwritten report that read, “Her parents understand that their daughter will not have a meaningful life.” Immediately, my emotions exploded within me. I was angry. I was sad. I was confused. How dare this doctor, who we had met only a few days ago, pronounce such a damning statement over my daughter. No meaning? From that day forward, we began to ask the questions: What is meaningful? What is good? What is pretty? What is normal? What is right? And ultimately, we asked: Who has the right to determine these answers? We were humbly left on our knees asking God to please give us some insight. We needed direction and a glimmer of hope. We needed to know that everything was ok; the sky was not falling and that He would ultimately take care of us all. A petite, little fireball in our church, named Cindy, is a mom of a son with Down’s Syndrome. Right after I had read the doctor’s report, I ran into her in the Sunday School hallway. God put Cindy in my path that day, and it changed my life forever. Cindy, nonchalantly, said, “Robin, God will give you the strength every day, and you need to take it one day at a time.” That simple sentence confronted the other sentence from the doctor and won. Looking back at that simple conversation, it was like a beam of light broke through the roof and shown down on me from heaven. God really did speak to me (through Cindy) and confirmed to me that He was in control, and he would give me my daily allowance of grace to make it. He would give me all the factors that I needed to be a man. He would give me an identity that was far better than any society could bring. I didn’t have to worry about the strength I needed when I was 70 years old or even next week. All I needed was to take care of my daughter today. Today. I could do that. I could take care of Kennady today. Then, I will wake up tomorrow and pray for the strength for that day.  

JourneyFEST would love you to follow Kennady's meaningful life at www.mademeaningful.com