I must admit, when approached by Jared to write a reflection for Franciscan Young Adult Ministry, I was hesitant, to say the least. With minimal experience in theological teachings (I completed elementary religious education), my infantile understanding of philosophical reasoning (the chicken had to come first right?), and my limited life experience (yes, this is me implying I’m young), I figured I would spare everyone (aka myself) and politely decline. Truth be told, I wasn’t even sure where to begin. Let’s be real, I am not particularly known for being emotionally inclined. However, in true Jared fashion, he didn’t take no for an answer. Instead, he expressed his confidence in my ability to minister to the young adult demographic and encouraged me to pray and discern before making a definitive decision. After weeks of discernment, it became translucently clear, Christ was calling me to share how vulnerability strengthened my faith in Him.
"I decided to do something I don’t often (if ever) do and share my most vulnerable moment with all of you."
Enlightened, I drafted a very well thought out, analytical article concerning Christ’s desire for us to grow closer to Him in our vulnerable moments. After a week of going through the writing process, deciphering, researching, drafting, revising, editing, and proofing, I had, in my opinion, a painstakingly derivative and exceptionally well-written piece. Feeling completely unsatisfied, I began to discern even further, and I realized that I was missing the mark. Yet everything I had stated in my article was articulated poignantly, and accurately I had failed to convey the significance that vulnerability can make in one’s spiritual journey. I knew just what I had to do, so I went back to the drawing board, and praying for the Holy Spirits guidance, I decided to do something I don’t often (if ever) do and share my most vulnerable moment with all of you.
Rhett had a very happy Thanksgiving!! #weareblessed
It is no secret to those who know me that my son, Rhett, is disabled. It is very apparent as he is non-verbal and requires a specialized wheelchair for mobility. What may not be as visible is how Rhett has progressed to where he is today. Rhett is the first and only child for my husband, Brad, and I. He was born with no complications, full-term, in fact, an entire 11 days past his due date, at very healthy 8lbs 7oz. Rhett’s journey is unique in that his condition did not present itself right away. Rhett’s development early on was very typical. He would play, crawl, suck his thumb, feed himself, pull himself to stand, giggle, and he was even starting to babble.
"Heartbreak is not only emotional, believe me, there is a real physical response as well."
At approximately 18 months my husband and I began to notice some minor delays in Rhett’s development in that he was not walking or communicating as most other children his age, which lead Brad and I to begin numerous therapies with Rhett including physical therapy, occupational therapy and speech therapy. However, even with the weekly therapy sessions Rhett’s condition appeared to progress, worsen even, as time went on. Rhett’s development was regressing at an alarming rate. Rhett no longer smiled or giggled, he stopped pulling himself to stand, he no longer crawled, he stopped feeding himself and even eventually ceased to suck his thumb. It is difficult as a mother to express the fear I felt when I looked into my son’s eyes and saw that he was leaving me. I felt him slipping away, bits and pieces of my son, who he was, his personality, slipping away little by little. As his mother, I knew this, felt it, but selfishly did not want to lose hope that this was just a phase and would eventually pass. Of course, Brad and I were actively seeking out answers from numerous doctors and specialists as to what may be the cause of Rhett’s developmental regression, but truth be told I didn’t need answers because in my heart, I already knew. I witnessed his struggle, and I just knew whatever this was, it wasn’t a phase, it was serious, and it was happening regardless of the diagnosis. Finally, after a year of testing, we received a diagnosis. Rhett has a very rare neurodegenerative genetic condition known as NCL type 1, commonly referred to as Battens Disease. As Rhett progresses in his condition, the symptoms are regressive in nature; once a function is lost, it cannot be regained. The doctors gave Rhett a life expectancy of between 3 and 8 years based on his diagnosis. He was 2 ½ at the time he was diagnosed. Rhett is now 5.
Heartbreak is not only emotional, believe me, there is a real physical response as well. I have never (never) been more vulnerable than when my heart literally broke with the news of Rhett’s diagnosis. That devastating news that confirmed my gravest fear and effectively depleted the hope I was already barely maintaining. I was in every way, and in some ways, still, am, broken. Completely and utterly broken. You see, as I was grieving for my living son, I was also grieving for my future children.
Given that NCL is a genetic condition, the odds of Brad and I having future children with this same disorder are high, specifically 25% or 1 in 4. So, there is a 75% chance that any children we conceive in the future would not be diagnosed with NCL. Needless to say, that news added a whole other level of heartache.
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong." - 2 Corinthians 12:9-10
I had a choice to make. I could choose to live in fear, or I could choose to live in faith. That’s the thing about free will. God wants us to full-heartedly and consciously choose him. In our vulnerable moments we are presented with this opportunity. The opportunity to choose Christ while we are defenseless. He wants us to turn to him uninhibited. I’d like to confirm that in the wake of my most vulnerable moment, I absolutely and unequivocally chose Christ. But I didn’t. I became angry and resentful. I questioned God. Why He would give me a taste of something so beautiful and then slowly pull it away. I would never hear my son call me “mommy”. I would never hear him tell me he loves me. I would never feel him hug me. I would never see him take his first steps. Though this admission doesn’t make me proud, I was furious, furious with God. I can, however, proudly say that I did eventually choose Christ because even though I was hurting immensely, Christ did not give up on me. I continued to pray (even if it was in a questioning manner), and through this process, understanding began to dawn.
"It is in our vulnerable moments that we are given the opportunity to choose Christ, and that opportunity is a choice to allow God’s grace to enter our lives."
I realized just how incredibly blessed I was and still am! Blessed to have a husband that supports and loves me and loves Rhett unconditionally. Blessed to have heard Rhett giggle and grab me in earnest. Blessed to see Rhett bring joy to all those who have the pleasure to meet him. Blessed to simply be in Rhett’s presence. Blessed to be Rhett’s mother. Rhett was and continues to be, a gift. A gift God entrusted to me, why I am not entirely sure, but He did all the same, and from that moment on, I vowed to never waste another day questioning His gift in Rhett because Rhett is enough.
It is in our vulnerable moments that we are given the opportunity to choose Christ, and that opportunity is a choice to allow God’s grace to enter our lives. Our Heavenly Father doesn’t just want to be on a “first name basis” with us. He longs for an intimate, personal relationship with us. He presents us tribulations that are meant to make us vulnerable because He wants us to lower our defenses and come to him in our child-like vulnerability and unabashedly give ourselves over to him. It is in our weakness that He makes us whole and brings us to His salvation. When was the last time you opened yourself up to Christ in a vulnerable way?
Who is your favorite singer?
We will include this anonymous survey data in our reflection book due to be published next year. Polls help us understand each other's journey toward Christ and how to strengthen it.