How I feel

I thought things were getting lighter. Maybe it would not be so much this time around.

But it’s all coming back. All the appointments- the doctor, the therapy, the specialist, and the schedules. Make me wonder when I will even be able to go to the bathroom.

I feel exhausted, tense, and cranky. Heavy and disjointed on the days that I feel and more buried and lifeless on the days I don’t. Why? The weight of hope and the reality of what life looks like.

The hope of what I want things to be. What I dream they could be and the reality of what they really are.

Trying to still have hope even when life feels and looks ugly is so hard.

I know I’m blessed.

My daughter isn’t on life-saving medical equipment. She is not fighting a horrific cancer. I know there are families that go through so much more. In a way, it gives me hope for what I have and what can happen for us.

It also doesn’t take away my grief. It doesn’t stop the conversations I play over and over in my head. Thoughts about life, who my daughter is, who I am, and how hard I have to fight to make time for everything in all the chaos.

The grief that “normal” doesn’t exist. Of never knowing what is coming next. I tell my daughter I don’t have all the answers, but I will ask, I will research, and I will keep learning. So that I can help her have the best possible life.

I know the tools I am supposed to use, and my goal is to share them with you. I am also a human woman who sometimes just has to cry and scream. Some days all I have is holding myself and telling myself it’s going to be okay, that all we need to do is breathe and focus on the next thing.

But I am tired, I am scared, and I feel more than just overwhelmed; I feel crumbled.

I will rest

and I will rise

I must advocate, I must parent, I must love this most beautiful human God gave me.

I know I’m not alone anymore; I have a village.