Maddox spent the first three months of his life in the Neonatal ICU of the University of Virginia Medical Center. He was born with a host of issues that defied diagnosis for the majority of his stay in the NICU. Ultimately, he was diagnosed with a super rare genetic condition called Vici Syndrome.
Almost daily for three months, I drove an hour each way to hold his tiny hand, rub his head and beg God for his precious life. He was my first grandchild and I loved him with a type of love I had never felt pre-Maddox. I loved him from the second our daughter told us she was pregnant.
The birth of a child who is unhealthy is a circumstance no one plans for. It left me weary and questioning. His birth brought with it a dozen daily fires to put out. My energy was so radically re-distributed that I had to will myself to just keep putting one foot in front of the other. I did what I always do. I painted on my best brave face and took care of all that I could. On the inside, though, I fought an epic battle daily. I waged war with doubt, fear, faith, fairness, and too many more to mention.
I remember the day when Maddox’s diagnosis was confirmed. That pain stands alone in my memory as the single worst pain I have ever felt. Vici syndrome guarantees a very short life for the vast majority of those afflicted by it. The average lifespan for the condition is 3 years. Until then we had held out hope for an eventual recovery. Even a life with severe special needs felt way better than a profoundly short life. We weren’t prepared to hear it. That day was extremely dark.
Life is like that, sometimes. We all encounter really hard things. My friend lost his sweet, sweet Dad just yesterday. Another friend has a grandson who is battling cancer. A close friend is caring for her mom who is aging. I know people who are struggling with work issues. My friend’s husband abandoned her with a toddler and an infant. Everywhere I look, heartbreak and difficult times rule the foreground.
How, then, do we handle life when things go sideways? What positive is there to say? Analogy has always been my favorite literary tool. Word pictures help me measure circumstances sometimes. A great analogy came to mind around the time Maddox’s diagnosis was confirmed.
I saw in my mind’s eye a father, grandfather, or strong male character holding a little girl in his arms. With a mischievous glimmer in his loving eyes, he dips and lets go for a nanosecond as if he’s going to drop her. The little girl squeals and grabs him tighter just in time to figure out that he had no intention of dropping her. She then giggles and snuggles him tight as he whispers in her ear he’ll never let go. It’s a really sweet picture. I have witnessed that exact scenario more than once. Strong relationships between children and their protectors are beautiful to watch.
The first thing that caught my attention in the scenario was the nanosecond for the little girl. For her, there was momentary terror. She felt dropped. The second, and the most important part of the scenario, was that it all happened in a nanosecond. In real-time she only dropped a couple of inches. He had her. He would never hurt her, and she knew that.
I felt dropped when I heard Maddox’s diagnosis. I held on to hope for months and all of a sudden I was falling. Have you felt that in your own life? Have you had a moment when you felt as if all stability failed you, as if a black hole swallowed you right where you were standing and you were unsure you could be saved? I believe we all have or will feel that feeling at some point in life. I want to offer something to consider when you find yourself suddenly falling.
I went back into my analogy and made the man God and the little girl myself. When I see the scenario played out with the roles reassigned, I can imagine the falling sensation is just a momentary terror. In my heart, I know God won’t drop me. I’m encouraged to snuggle tighter. I have faith to believe the falling happens in God’s nanosecond. To my humanity, it just feels longer. I may not know the when’s, whys, or what’s of my circumstances. I do know, however, My God has been and will always be faithful. Regardless of my feelings, my circumstances, or my pitiful attempts to cope, God’s truth remains.
Maddox lived 2 ½ years. He was loved by everyone who met him. He has been gone a little more than a year. When I look back on his short life, I am slowly able to recognize how his life impacted mine and the lives of others. I am able to weave together the stories, the heartache, and the daily fires to reveal a work of beauty. Maddox is with Jesus. His life mattered. I cannot fully understand why the pain was necessary, but I am so grateful I had the opportunity to love him and be his Gammy.
When you encounter momentary terror:
- Know God won’t drop you
- Remember to cling to God’s promises
- Trust God’s timing
“Dear friends, don’t let this one thing escape you: With the Lord, one day is like a thousand years, and a thousand years like one day.” (2 Peter 3:8 HCSB)
“It is not for you to know times or periods that the Father has set by His own authority.” (Acts 1:7 HCSB)