Fear Not

Today was my 50th birthday! It’s not something that ever bothered me, thinking about turning 50, but more so, I appreciated the fact that I had the privilege to celebrate another birthday. The day started as one of the best, as I woke to the most special card from Ella. A gift I will cherish forever.

As I looked at the front, it seemed as though it was like any other card that she would write for me that I would cherish. A picture, some I love you’s, but also, a surprise on the back that would make me feel, for a moment, that the disease had no control over her. Words that would come from someone who could express exactly what she feels, and written in a way that could only bring tears to my eyes. It was a gift, and it completely made me see her in a light that I have never seen before.

I’m not going to sugarcoat my feelings. This disease has made me angry, what it’s taken, how it’s changed them and the thought of what lies ahead. It’s not something I’m proud of, but it’s something I am working on. Today, thanks to Ella and the words she wrote to me, and about me, the anger and frustrations were replaced with appreciation and a feeling of gratitude that I have not felt in a long time. Today was a good day!

Since growing up with MLD, many things that happen in my relationship with Ella are questioned. Did this happen because she is 14, is she being a typical teenager? Maybe it’s because her brain is atrophying and she can’t help herself sometimes, I simply don’t know. I do know that I have spent so much time on what troubles her, but the card…her words opened my eyes. God gave me a gift in her words and for a moment I felt like God worked through her to give me just what I needed.

I always dream of what her life would be like without MLD being a part of it, and today I was given a small glimpse of it. It changed me and reminded me just how unbelievably lucky I am to have her here, teaching me lessons of gratitude and as she so perfectly put, “together growing” into the mother/daughter duo we were meant to be. 💗

~ by Rebecca on November 4, 2022.

Posted in Diagnosed
Tags: acceptance, Birthday, caregiver, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, gene therapy, gift, God, gratitude, hope, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, rare disease, sadness, special needs, strength, thankful, warriors