Fear Not

It seems like yesterday when Hut and I sat up in bed till 3 am, looking at each other, talking and wondering if we would ever laugh again. The house was quiet, the kids were asleep, not understanding the gravity of what unfolded earlier in the day. Hell, we couldn’t even fully process it yet! We went into survival mode that night, not knowing where the road ahead would lead us, yet here we are, almost 12 years later, a moment captured in time. A culmination of years of wonder and worry, joy and pain. However through it all, we carried with us the steadfast belief that we would be sitting here, just like this one day, celebrating the fact that Eli got to live… that we ALL got to live to see this day!

V is a long way to wait in the alphabet at graduation and although I knew it would happen, the anticipation of hearing his name called was like watching the second hand on the clock slowly tick by. Not to mention the thought of not hearing his name thanks to the insensitive people who brought airhorns and blasted them every few kids, blocking some kids names from being heard. After all these years of waiting, I think I would have been escorted out of there if I could not hear his name due to airhorns! Thank God that didn’t happen!

As I saw Mr. Kinch get up with him to get him ready for his turn, I could feel my heart beat faster! The emotion started to well up in my body and somehow I became hyper aware. I could see nothing but him and hear nothing but my own thoughts of gratitude and thanks!

We watched him eagerly walk up to the stage as they called Elijah Thomas Vivian. Hut and I could see his smile as he walked across the stage and down the ramp for a quick picture. As he walked back to his seat, I could feel a weight lift. Suddenly I felt lighter, my shoulders less tense, and as I turned to Hut with tears silently streaming down my face, I knew we were both thinking the same thing… WE DID IT!!!

For the next few minutes we embraced, with tears rolling down our faces, knowing that a moment we had hoped and prayed for, had come to fruition. Thanks to Jenn McVey who was sitting behind us, the moment was captured perfectly!

Every sacrifice made, the separation of our family, every tear shed to get us to this moment. We turned our “mess” into a message! A message of preserving through some of the darkest days, never giving up and making the most out of the moments we are gifted together! 🎓🙏🏼💙💛

~ by Rebecca on June 12, 2024.

Posted in Along the way, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, challenge, changes, class of 2024, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, enjoy the moment, family, Fear, gene therapy, God, graduating, graduation, gratitude, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, parenting, persevering, rare disease, sorrow, special needs, strength, warriors