My favorite number has always been four. I was born on the fourth day of November, I had four cabbage patch kids and for as long as I can remember I had always wanted four kids of my own. My only girl was my lucky number four. Four was my “lucky” number I believed for so long, until it became the number that would remind me of how many years I had with my Ella before MLD would change our life forever.

We were walking on the boardwalk this weekend and I saw a little girl walking in front of us about four years old, and a smile came across my face. I remember Ella walking on the boardwalk at that age, her sun kissed hair, chasing her brothers, and jumping over the waves while her fingers were wrapped in mine. Never in my wildest dreams did I ever think that all the dreams and visions I had for her life would soon come to a screeching halt. The peace I felt in those blissful four years would be replaced with an uncertainty that I have yet to recover from.

The course change we have now been on for almost ten years has broken my heart. Dreams look different now, they are mainly filled with asking God to spare her from the same fate as Eli. Visions of her legs continuing to do their job, and a brain that can function well enough to hold a job one day. Hopes of her being able to protect herself from the vulnerability that comes with being a child/teenager dealing with special needs. These are my new dreams.

Ella has her own dreams, dreams that may have looked different if MLD didn’t exist in our world, but I don’t think so. She wants to be a teacher someday. She is great with kids! She is loving and all she wants to do now, is to babysit like most 14 year olds. As I write this with tears in my eyes, I can only hope her dreams come true.

Lately I see more of what this disease has done to her. Not only physically, because that isn’t hard to see, but how it has affected her memory. The things that we did yesterday, sometimes become something that she doesn’t even remember anymore. The simplest of tasks have become a struggle to do without prompting, and the lessons learned in kindergarten through third grade are things that we are continually going over and over again, month after month and now year after year. It’s gut wrenching to witness.

Why has she been born to suffer from this dreadful disease? I will ask myself this question till the day I die. I will also thank God for every day with her, especially those four amazing years where I was filled with blissful hope of what her future life would look like. As much as I thought my vision was perfect back then, I imagine that God has something even grander than my initial dreams planned for my Ella Rose, and one day I will look back to those first four years and realize what I thought, was not even comparable to what HE has planned for her in the years after.

~ by Rebecca on August 25, 2022.

2 Responses to “Four”

  1. What a beautiful reflection, Becky, not only about your hopes and dreams for your precious daughter, but of your faith in our loving God who accompanies us in all things. May God’s enduring presence continue to give you comfort and strength.

    • Thank you Marcia. I appreciate the kind words. I must never stop believing in a plan where He can turn all things into something good and greater than I can imagine. 💗

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