Fear Not

Tonight at dinner, I placed a small Gatorade in front of Eli. Most nights he can open it but some nights he struggles and someone will open it. Tonight as I watched him struggle, Eric went to open it and I asked him to stop… I told Eli to keep trying even though we could see his frustration building. He tried a few more times with all of us chiming in on how to turn the cap before Eric ended up doing it for him. As I watched, it reminded me of how I have always wanted to make things as easy as possible for him/them. It also reminded me of the lessons learned about how struggle can be good and even necessary for growth and change. I have learned that making life easier for someone is not always the best thing.

Sometimes when we look at a butterfly, we forget that it was once a caterpillar. We don’t think of the process that took place for it to become a butterfly. The little insect that we might not give much thought to stuffs itself with leaves until it forms a protective casing. It then transforms its body, eventually emerging as a butterfly. During this process there is a struggle… the butterfly as it gets stronger breaks through the chrysalis to his new life. If you helped the butterfly by breaking away the chrysalis to remove any struggle, it would defeat the purpose and the butterfly might not survive. The struggle in life is sometimes like this and as much as we want to make things easier, it is not always the best thing.

One day about a year ago I was in Wegmans and I had just walked in. I saw an elderly woman shuffling to the bathroom as she got off her scooter. I went to open the door for her and she looked at me and said “no thank you.” At first I felt embarrassed because I was just trying to help but then when I saw her a few minutes later in the produce aisle she looked at me and said ” I need to do things on my own so I can continue to open the door for myself. It’s hard but if I let people do it then I’m afraid I won’t be able to do it anymore.” I said “thank you for saying that as it is an incredible lesson for me to learn”. She smiled and scooted away.

This lesson was brought to the forefront of my mind tonight as Eli was trying to open his Gatorade. I have spent years trying to make not only Eli’s life but all my kids lives easier by lessening the struggles that come their way, by jumping in when I see anything remotely difficult coming their way. I used to equate easy to happy but the fact is that we NEED these struggles in our life, for without them we wouldn’t know what we were truly capable of.

Think of the movie Inside Out. If you haven’t seen it, it is all about emotions but it carries a deeper message. Joy is the main character (emotion) and she tries her hardest to prevent sadness from becoming a core memory for Riley (the young teenager in the movie.) as hard as she tries to stop sadness or struggle if you may from being a part of Riley’s life, she soon learns that there really can be no joy without some sadness. Struggle or sadness; is hard as it is challenging to witness some days… we may want to do everything we can to “fix” it or take it away but the fact is there are amazing things that can come from struggle or sadness.

Without Eli’s struggle he would not be where he is today… if we did everything to make his life “easier” I would imagine his disease would have progressed more than it has. It’s a challenge to put his clothes on, to get on the kitchen chair, to climb into the car and to open a Gatorade bottle but thanks to a lesson learned at Wegmans I now see those “struggles” as opportunities. Opportunities to grow, push and transform into a strength that would not be possible without the struggle!

“Where there is no struggle, there is no strength”

~ by Rebecca on June 22, 2020.

Posted in Diagnosed, Life after diagnosis, My journey
Tags: challenge, changes, eli and ella, Eliandellasprayerwarriors, gene therapy, God, Hero, journey, joy, life, memories, metachromatic leukodystrophy, MLD, rare disease, strength, struggle