A year later and I am just now realizing...

                       "But understand this, that in the last days there will come times of difficulty."

                                                                       

   Those times that you want nothing more then for your body to just stand still. To hold still. To not jerk. The moments you look down at your phone to see Mom again..."Are you ok? I'm so sorry your dystonia has been a struggle. I wish I could take it for you. I love you!" 

Let me be honest. I have went from being frustrated to angry. To realizing I have no control over when I move and when I don't. Which lets be honest drives me crazy! 

Taking a step back into time. My mindset this time last year was "We will put a simulator in and call it done. No more dystonia." I sometimes laugh at how crazy that mindset was but I had so much hope for a cure then. While I still have hope that one day the future generation will see a cure it's really hard to keep my eye and heart on this. 

                               Those moments where your asking Jesus all the "Why's?" 

  1.)Dating:

Remember that one date that you where asked a million questions about why your body moves? That was such a fun date...Let me answer more questions since that is the first thing you see in me. 

2.)Those times you blank completely out but have no idea why or even what causes it? It always ends up in "we don't know". 

3.)Those times you want to push and work as hard as you can but your body is on the struggle bus...BUT then you know there are people out in this world who have healthy bodies that don't work nor want too. Like how is that even close to being fair? I'd take their healthy body and push and push. 

4.) Why is chronic illness come with anxiety? Like I never know from day to day how I am going to feel or what dystonia may bring to my body. 

5.)That time where you suck your pride and make yourself go through speech therapy. Thinking "Man I did this and I can't wait for the doctor to say your speech sounds awesome! Speech complete." Only for them to say "It takes time. Keep going!" What? Why? 

        From day one when I started blogging I promised myself to be honest in each post I blogged. 

There are crappy days that make me want to give up! To say "Dystonia you win!" 

In the last few days I have felt so frustrated with myself. Asking myself "Why can't you control your body? It is YOUR body Chelsi." I have fought it daily this week. Wanting no one around me or near me. 

I can only handle so much "There is nothing else we can do. We are sorry." Do something! Fix it. Research it more. Do something so that not another human goes through this or feels this way. Your the doctors. And also very human at that...

I came home tonight to only find myself struggling to get dressed. Like come on! At 26 years old this shouldn't even be a struggle...and then when it is I get so frustrated and just stand there thinking that will make things better. Ha. Guys Getting mad doesn't help things but only makes it harder so I am learning. 

Then I am sitting in bed and this picture comes up on time hop and I remember that this was a few weeks after our rough results with a spinal tap. Somehow she makes everything ok!

Not once has she not been by my side. Not once has she ever complained. 

I know that Jesus knew what he was doing to allow her to be MY Mom. 

This time last year we were sitting on the couch when she said very slowly with tears in her eyes "I'm sorry sister. There isn't anything else we can do. Sometimes we don't understand Jesus's ways but we have to trust their good." 

I thought that I was OK with no answers. 

I kinda just skipped that no answers part until about a month ago. 

It hit me that there really wasn't a cure yet. 

That dystonia is just what it is. 

Tough.

A year later and I am just NOW realizing that this is reality. 

It is by far the hardest thing to remember that you are loved when you just feel so defeated. 

Welcome to David and Goliath. 

A part of me feels like I know how David must have felt before his battle ended in victory. 

Sometimes, I pull these out to just read. To remind myself Jesus uses the tough stuff for his glory. To remind myself giving up would be easy but fighting it head on will always be there harder one.  But the one worth wild.

I'm so thankful that when I feel so crappy about myself that Jesus still loves me. 

"Sometimes God will put a Goliath in your life so you can find the David within you." 

Sharing my heart

                                 Lately my heart has hurt for the things I can’t change.
This past week has marked a year since having to let health be. For the past few weeks I have struggled with that. Struggled with the fear of letting Jesus just have it all. I’ve always felt the need to be in control of what I’ve never been in control over. This past week I’ve been reminded of the full journey. The full uncomfortableness of sharing with the world such a personal testimony.

This week I was faced with the uncomfortableness of reading a book to all the kindergarteners. I must have told myself and Craig a million times I couldn’t do it. I guess you could say I was setting myself up to fail before I even knew how Jesus was going to work Friday morning.

                             We really never know what Jesus is up too for our life’s..

A year ago this would’ve never happened. You learn to appreciate being in the moment more when you’ve been taken to a moment completely opposite of this one. 

Last Tuesday before this happened Craig and I were suppose to have a meeting. Something came up where we had to have it over the phone. 

Sometimes, Jesus allows different plans because he knows exactly what we need! 

I always listen when Craig talks because he’s a wise man. Each time I learn something new from him about just life in general. 

On this particular day I was wrestling in God’s word. Knowing Jesus loves me daily. Dystonia or no Dystonia but feeling like I’ll just never be “good enough”. 

If there is one thing Craig said over the phone that hit home to me was this 

“It’s ok to hurt or feel disappointment because that means you care. Don’t stay there too long because it will crimple you. You keep going!” 

See, I needed this pep talk...little did he know! 

I had mentioned all week me wanting him to be there at the school Friday! I however knew it might not happen because of his busy schedule. 

Not only did he show up but he stayed the whole time! Which may seem little to anyone else but that completely made my week! 

If you don’t have a boss like this...well your missing out cause it’s rare! 

I did it! I read the story and by no means was it perfect but the fact that I did it was huge! 

Flashback:I was in 8th grade and it took me 20-30 minuets to just read a paragraph out loud in class due to my dystonia. 

I’ve watched Jesus break my heart for what breaks his this past week. 

I’ve watched Jesus work in my life the last year! 

Sometimes you just have to celebrate with a dance party! 

My heart was pulled in so many directions this week! 

Today, Mekale prayed with me during church. Who would’ve thought that had I not lost control of my speech I probably wouldn’t ever be at Chick-fil-A or know Mekale. It really is a testimony to God’s love for me. 

I’m not sure anyone can say that their speech therapist prayed with them let alone just loving me. 

This afternoon Dystonia has really hurt physically. 

Tonight has also been emotional knowing I’m not in control of my life but Jesus is. To have a heart to heart chat with Jesus about all the why’s and scary things. 

I think he understood :) 

Also, this week has taught me one of the most important lessons. That is that God allows unfair things to happen. He allows us to struggle. 

But his love for us never fades. 

I ended my Sunday evening giving Jesus Dystonia fully this week! 

Doctors,  Thanks for challenging me and telling me I’d never be able to do things that I just did this week! #Boom 

The sky is the limit, right Craig?! 

I’m looking forward to this week and all Jesus has in store! 

I’m glad that HE knows my heart better then I know my own heart. I never knew how much I needed Craig and Mekale this past week! 

Sometimes loving someone is all it takes...

Have an amazing week everyone!!