Fear Not

I always used to think of this statement as something that was more based on physical hurt, or inappropriate hurt, I never really thought of it as something that would relate to me because I wasn’t hurting anyone, I was just sad or angry no big deal, but thankfully my eyes are now opened to all the hurt that can be caused due to scars and unresolved emotional pain. Today I found myself hurting my boys with my tongue and to me that is one of the worst hurts. “The tongue has no bones but is strong enough to break a heart” I have lived this quote; knowing its truth as best as possible but sometimes the hurt comes out without you even realizing it.

Today I was hurting and I don’t think I always realize it because it has become a part of me that is always there just waiting for some reason to come out. Growing up in a family that used their words all too often as weapons made me realize that I did not want to live this way. The scars I carry are deep and can not be undone, so as we all so often do, I made a promise to myself to not live this way with my loved ones. That is a promise that I made even before I became a mother and one that I still am cognizant of every single day. The tongue is powerful and the things we speak can only be forgiven, not forgotten. Today my hurt came out in words and I hurt my son. Hurt people, hurt people. Although I am hurting it DOES NOT give me the right to just say what I want and I’m sorry wont change it but I can choose to work on knowing myself well enough to recognize what I am feeling so my hurt does not hurt anyone again.

Fast Forward to a genuine apology, a genuine acceptance, some moments to reflect and life goes on. For me it remains in the back of my head for a day or so because that is just me, the doubter, the over thinker, but also the one that plays on repeat my dad’s words “kids don’t come with instructions”. I look in the mirror, try to forgive myself and get ready for the next hurricane that is coming straight at me.

This hurricane would be my Ella. My heart hurts for her in so many ways but I am not going to lie, my heart hurts for me too. That’s ok, I am allowed to hurt and grieve for my daughter and the losses that she has already suffered due to this horrible disease. Lately I tend to be hurting more and more for her. My baby girl is struggling in so many areas and I can do nothing. I hurt. She hurts. We collide.

The MLD dementia is horrific to live through with her. When she asks me something over and over I just don’t have the patience that I once did. When she can’t find something that she just put down two seconds ago, when she doesn’t remember her friend’s name or her teachers name. When she walks in and doesn’t know if she has homework or how she forgot to bring something home. When she goes into the shower and forgets to rinse her hair. When she texts people too much but can’t bring her phone to school because we can’t afford it to be gone on day one. The outfits that get changed numerous times because she forgets that she just put it on and doesn’t need to change it again. When she seems to be angry 80% of the time anymore and she wont let you love her it hurts. This weekend she was having the biggest breakdown of her life and it broke me because she would not let me love her. She pushed me away and proceeded to be alone in her agonizing thoughts and feelings. There was nothing I could do but hurt. Hurt people, hurt people.

I sit here today, three days later and I am still hurting for her. Obviously part of this is hormonal but it is also part of this disease that is changing her, changing my Ella who at once was filled with so much love for me and back then, I could also take away the pain and the hurt, but not anymore. Now I am forced to sit and watch her continue to be changed by this disease. A change that in my wildest dreams, I never imagined happening. Maybe I am naïve; I think I am, I am.

I am naïve because I see it, I see the disease progression but God, I don’t want to admit it. We wanted a cure, We wanted Ella to have the life that we knew Eli would not get. the “typical” life that we would give anything to go back to, but we can’t. Now we go forward one day at a time into this “new” life, not knowing what’s coming next as far as MLD is concerned.

I want to stay in bed but I cant, I want to drink, but I cant, I want to run away, but I can’t… the fact is, I CAN do any of these but I choose not to, because God allows me to see past the hurt to this beautiful world that we live in, where I am blessed every single day that I wake up to be the mother to these four amazing kids.

My prayers is that God allows my hurt to not hurt anyone along the way but maybe it can help someone recognize how their own hurting can affect others.

~ by Rebecca on September 21, 2021.

Posted in Diagnosed, Life after diagnosis, living
Tags: dementia, eli and ella, Eliandellasprayerwarriors, God, hurt people hurt people, journey, life, metachromatic leukodystrophy, MLD, rare disease, sobriety, sorrow, strength