Fear Not

The quickly planned dinners, or the nights eating on the road, sometimes at the game have been a part of some of my fondest memories as a mom. As it happens with many of us, we might not recognize this, until those moments become memories from long ago.

I guess if you come from a family that plays sports, you just assume this will be a part of your life until your kids are living their own lives. We spent many years living the sports family life, but those sporting days came to an end a lot sooner than we anticipated due to MLD, and how it changed their body. Thankfully, we have been given another opportunity to revisit the joys of the game and it has brought so many enjoyable moments to our lives.

“Our” basketball season started a few weeks ago and Eli was ready! His Spring-Ford necklace hung patiently over the summer, waiting for this time of year, and it was the first thing he put on as we headed to the first game. That, along with his new team pull over, made him game ready! Seeing him so excited to get dressed and head out the door put a smile face that took me back to the exciting days of anticipating the boys games and the moments that would follow.

Seeing him on the “bench” watching the young men prepare for the game fills me with many emotions, but mostly joy. Eli lives in the moment, looking forward to every game, where he is present, eagerly awaiting the next high five as the players walk by him.

The home games bring another type of joy every single time I witness it. These young men holding Eli up for the Star Spangled Banner has brought many to feel things they might not be used to feeling. It’s a special moment to witness. Last year we had someone drive an hour to a game where he knew no one on either team just to witness the beauty of solidarity.

Every picture like this tells 1000 words!

I have wondered for years what the purpose is in all of this. The disease, the progression, the unanswered prayers and the course change of our life. These question that I ponder, will never be understood by my earthly mind, however, the moments like this along with others, no doubt have served a greater purpose that I will never doubt.

This team has also accepted Ella as a number one fan, and they know just how much the end of game knuckles means to her as well. She is right behind Eli every game, rooting every single one of them on.

This game, and this team has not only changed Eli’s life, but our whole family. It has given us all something to look forward to, and knowing that it brings a smile to Eli and Ella’s life is all that matters.

My wish is that one day these young men and coaches understand just how much their inclusivity has impacted Eli. Feeling valued and welcomed is one thing that we can all agree is important to everyone, and being a part of this team has made Eli feel just that!

~ by Rebecca on December 17, 2023.

Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, basketball, challenge, changes, day by day, eli and ella, fitting in, game, God, gratitude, Hero, hope, inclusion, inclusivity, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, parenting, Questions, rare disease, special needs, strength, team, warriors