Fear Not

I had a dream and that dream came true.

I remember as I was growing up that my biggest dream was to become a mom… a mom with children that would never wonder how much they were loved… a mom that would do anything for her children, but as I’m learning through this journey… I might not be that mom who can do EVERYTHING.

The scenery is starting to look familiar and I don’t like what I see. I can’t save them and this is the hardest truth I have ever had to face.

Ella… my one and only daughter and my prayer come true. Seeing the changes in her recently has been something that I never anticipated. The tired and quivering legs after her short bike ride, the shaking arms after helping me make a cake as she tries to hold the hand mixer… the changes are real and they were not there six months ago. My heart is heavy and hurting more than I ever imagined.

I watch her walk down the steps holding onto the railing, feet turning in more noticeably than ever before. I see her little hand tremor with intention and the uncertainty/frustration in her eyes with certain things that should come to her with ease. These things are simply too hard to ignore anymore. I can’t stop what is happening in their body and how MLD is changing their lives… changing OUR lives.

There are days that I wonder how one is supposed to withstand the pain of watching your child lose abilities. Watching them struggle with so many things yet all we can do is watch it unfold.

I cry out to God and all I hear is crickets.

I struggle with understanding… with watching them face the daily challenges that they come across. I have not said “why us” because life didn’t pick us to torture, life just happens. Genetics happen. I will die some day and never understand why these babies have to suffer… why they are being robbed from so much in this lifetime.

I don’t have an answer to the above statement but all I can say is this : It’s a good thing to cherish our days together a little more… to laugh harder and to know how precious life is.

Sharing these kids with the world has had its ups and downs but the love that has transpired because of it will never go away and for that we are so blessed.

💙❤️ Love this oldie but goodie

~ by Rebecca on June 26, 2019.

Posted in Along the way
Tags: Dream come true, Eli and Ellas Prayer Warriors, God, leukodystrophy, metachromatic leukodystrophy, MLD, questioning, sorrow