The first year of loss consumes me. Every experience held has a deep painful reminder that one certain joy-filled boy is physically absent. I am overly aware of the grief residing in me and the effect it has on nearly every interaction, every experience, every day I live through since we got the diagnosis, watched loss happen in front of our very helpless eyes, and ultimately said a painfully separating good-bye-for-now to Titus. Each important date, each “anniversary” feels like it is lurking around the corner ready to strike my heart in a deep, painful way. Yet another reminder of what we have lost. Life, for me, has become trying to understand how all these broken pieces now fit together.
It’s messy and painful and sometimes hard to find the way. Something will come along and shatter part of me all over again and I realize the puzzle will never go back together whole. Rather, it will have juts and cuts, and holes and slashes. And the only whole I can cling to is the Holy Spirit in me. He is what fills – no, shines! – through the damage. God begins to weave back together a beautiful mosaic, but it is not without pain. It is also not without joy! The two reside together in their home in my heart and soul, learning to become roommates. They couldn’t be more opposite, more conflicting! The struggle is in finding a way to live balanced – not where I ignore them, but where I allow myself to feel both and see, with Jesus eyes, the redemption at hand here in us, in the world around us, and in the wholeness that has already happened in my son.
There used to be a time in my life where things just sort of always worked out. Everything from jobs, big moves, and friendships came together exactly as we needed. I remember back to when I was standing on my back deck in my home where I grew up. I was 15. I was declaring my love for God. I told him my life was his. All His. I went on to tell him I wanted to shine bright for him. I still remember this moment so distinctly because He spoke in me. I remember the feeling… it was like a quiet booming that was ricocheting around inside me resonating not just in my ears but into my heart and deeper still, into my soul.
“See that star?” He said. I looked up. I saw it… the brightest star in the sky to my visible eye. “You will shine brighter than that star for me, daughter.” In that moment, in my 15 year old mind, I felt chosen for great things. Pain did not cross my mind, not once. And, looking back, I wonder if it ever crossed my mind what a huge commitment that was when it came to trust Him, even though __________ (fill in the blank).
Even though I would struggle with depression to the point of wanting to die in college.
Even though once I entered the real world and the real job force, the days got hard and I didn’t like doing the hard stuff.
Even though we would pick up and move from security and established comfort zones multiple times.
Even though family relations were sometimes difficult to manage.
Even though we would have babies who taught us what sleep deprivation was.
Even though our boys would be diagnosed with a rare and fatal disease.
Even though we would hand our oldest son back to Jesus at the age of 6.
Even though there would be no reprieve from the rare disease world as our youngest would battle the very same Batten battle his brother was just freed from.
Even though we now have to live in a world seen now through a film of grief, welcoming it as a new friend.
Even though… I will trust in you God and you have all of me.
You see, as I fast forward through my life, I see God using me, using us. The world sees His goodness in this dark time. This world is broken, but there is still hope for redemption. Not just future redemption but redemption right here, right now.
So, while I live in this new world of grief-lined perspective, joining hands with my grief is hope. As the sorrowful streams of grief rise up, around me hope says, “Here I am. Ride that wave, feel it… I won’t let go.”
When grief reminds me of what I’ve lost, hope reminds me of what I still have to gain.
When grief shreds my heart to a million pieces, hope takes those pieces and welds them together in a new and beautiful fashion.
Grief and hope, pain and joy. I grab on to both sides. Grief and Pain are the reality of this world… Hope and Joy are the reality of God.
Thanks for listening,