Fear Not

Today I am reminded, just like every other day, that no matter how hard I want something to be different, I can’t wish it that way. I can’t use positive thoughts to make something better, like many think. Some days, when I am feeling like I just can’t control anything anymore, there is nothing to do but let go.

Today as I took the kids out, I couldn’t help but watch Ella walk. Like I have said before, it’s something you can’t help but look at. One foot, then another, her pink sneakers slowly hitting the ground harder than you can imagine. With each step, her toes on one foot barely miss clipping the other foot as she lifts her leg for each step. The anxiety watching every step takes over my body and I go to reach for her hand to give her a safety net as she pulls away.

She is 15, of course she doesn’t want to hold my hand, but it’s the only control I have trying to help her in case she trips. I pulled out my phone to take a short clip of how bad her feet are turning, so I can show the doctor to get ideas to help her. A few seconds in, the front of her feet clip one another, but thankfully she keeps going. It’s become a regular occurrence now unfortunately, even with new shoes, high tops, and of course the dreaded flip flops.

Today was no different than the last weeks have been.

Walking through the outlets this week, we made it about five minutes before the tripping started. The high tops, which were once the best shoes for her, now have become too heavy for her feet and they hit more often than not. After about the fifth time, the tears came, the eye makeup that she barely wears was streaming down her face. As she screamed out, all I could do was pull her close and hug her. I hugged her as she cried and screamed how much she hates herself. Screamed how much she hates her body and what “MLD” has done to her. A hug was all I had in me. I agreed with her and just told her how sorry I was. I wanted to disappear with her and make it all go away but it’s impossible.

I wiped her face, and grabbed her hand. She wasn’t happy but it was the only way I agreed to finish our outlet visit. After the next few clips of her sneakers, the anger and frustration became too much, and it was evident that it was time to go.

Her body is strong and she is fierce, but MLD doesn’t care… it doesn’t go away, or get better as some have asked. It will be here until I no longer am, and it has more control over her body than I care to admit.

When we were recently in Charleston visiting Eric, most days started good, but slowly her body tired. Walking somewhere was on the agenda every day, and although it may not have been far, it didn’t seem to matter much. One block was ok, but anything more than that and her hips would start to hurt. This in turn went to her legs hurting and of course her feet. The anger and frustration came next, which led to my anger and frustration building. It unfortunately affects everyone and before you know it, the day becomes about her struggles.

“At least Eli doesn’t have to walk” is something that she says more often now. Although it’s a sad statement and also can make us anger quickly, to her I believe it means, “ Eli doesn’t complain, because you are pushing him in a wheelchair, there is nothing for him to complain about.” I can now understand why some days she says she wishes she was in a wheelchair, no pushing her to do more, no sneakers crossing over and less uncomfortable.

People think gene therapy is the answer and tell me how lucky we are, but there is more to the story. Gene therapy is what I believe to be a cure, when you have no symptoms, unfortunately this was not OUR story. Now Eli AND Ella will be trapped in their less than perfect body AND mind. I am so sorry this is their story. Every day I am sorry!

I’m not sure what the future holds, but none of us do. What I do know is that I think it’s time to start letting go as best as I can. Jesus (for me) is the only way I can let go, and let him take over because I simply can’t keep fighting against a battle that I will never win.

FU MLD

~ by Rebecca on August 24, 2023.

Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, Hero, hope, Jesus, Jesus take the wheel, journey, learning, letting go, life, Love, metachromatic leukodystrophy, MLD, never give up, rare disease, sorrow, special needs, strength, warriors