Fear Not

Letting go of my desire to change Eli and Ella or THEIR story has been a struggle that has now spanned years. Trying to fit a square peg into a round hole won’t work no matter how many times you try but the ego tells you to keep trying, keep pushing, until one day you realize that holding on can do more harm than letting go.

Letting go doesn’t mean giving up or giving in. Letting go means surrendering. Surrendering to the unknown and accepting the powerlessness that I have in so many areas of my life. That statement is healing in itself. Surrendering is brave but is something that has scared me for so very long. I have always believed that if I surrendered to what is, that it equated to quitting on them or giving up. In reality, Surrendering only means giving up a power that I thought I had…the power of control. It means giving IN to a life that I was not ready to accept. To accept life on life’s terms and not my own! This is not easy!! To surrender shows strength, bravery and acceptance to live life as it unfolds on life’s terms, despite the pain along the way.

Yet my pain is not What God intended –

Embracing the life in front of me is not easy, even though I am reminded daily of why I MUST continue to accept what IS on a daily basis. Life doesn’t really give us what we want but it finds ways of showing us what we need. This journey is not what I envisioned or thought I NEEDED but I am reminded so often that I don’t have all the answers. The lessons learned and love felt along the way have been priceless!

Eli will most likely never drive or go to college, I don’t know if he will ever feel the excitement of a first kiss or the anticipation of moving out and having a life of his own. Witnessing the changes in his body over the years and knowing it will continue is so crushing. Thankfully, Ella’s future is still up in the air and although we really don’t know what lies ahead for her, we do know as of now she is 12 going on 8. The friendships are almost non existent (so incredibly grateful for what has remained) and watching her slowly progress with this disease is torture. My heart hurts every day!

Watching other parents of special needs kids do it all seemingly with a smile and acceptance makes it hard for me to share my truth and my feelings but I can’t live like that anymore. I love my kids and the gift of life. I cherish all aspects, yet All these things hurt because it’s not what I ever envisioned. It never crossed my mind that I wouldn’t have healthy kids or that they wouldn’t live the typical life that we all don’t give much thought to. You don’t know what you don’t know! I look back now and realize it was a gift to not think my kids would have anything other than a typical life. What do they say? Ignorance is bliss right? Now, every single moment means more than it ever would have meant back then. Once again, not my plans but his.

God had other plans and I love learning to embrace these plans as I grow into the person who is finally letting go of her idea of what life should be like.

I’m so grateful for music as it soothes my soul, reaching a part of me that only music can. This song does just that…taking me to places where I am able to let go of what I thought my ideal life would look like and help me accept the beauty of what is!

~ by Rebecca on February 16, 2021.

Posted in Life after diagnosis, living
Tags: acceptance, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, future, gene therapy, God, journey, joy, learning, let go, life, Love, metachromatic leukodystrophy, MLD, music, sobriety, strength, surrender, warriors