The Lens

Last week my daughter & I were out of state for her to go through some more testing with her team of doctors. This was one of the biggest challenges for me since CRPS has changed my life.

Before I would have thought nothing about being away, about handling all of this on my own.

It beat the crap out of me in so many ways.

I did push away from many people; I did not want anyone to ask me how I was doing. I didn’t want to lie & tell you I was doing just fine. The reality is that every day I could tell how weak I was, how fast I get tired, the mental fog I struggle with. There is no need to even discuss the actual pain.

But, my daughter kept me going. I kept looking back at how far we have come for her in the almost four years since we started with our Ohio doctors. We were overnight in the hospital last week & the reminders of her surgery in 2015 & how much she has grown were just stuck in my mind.

One of her favorite memories from her surgical stay was painting one of the bears from the art cart & turning it into a Michigan Wolverine to tease our huge Ohio State fan nurses. This trip, the art cart came by & she immediately grabbed the stuff to make another Wolverine. The two of us loved looking back at her picture from back then compared to now!

Three years later I have this incredibly strong & brave ten year old. She went through a lot in these few days and she smiled through it all.

I mean, don’t get me wrong….there were many battles & moments of frustration & “why?” questions. Like this here when we were nearing midnight & not totally done with prep but both so far over it & so far past exhausted.

I got home & the rest of my weekend was filled with cheering on my J between Cross Country & Softball.

The truth is…..my favorite thing in life is to be next to my kids in all they do or face.

But, yesterday I sat here feeling like I got hit by a semi & this last week had me in a funk. I am exhausted, my symptoms are freaking crazy. I sat here on the verge of tears for so many different reasons. I’m realizing that my body is telling me it’s in need of some self-care, some good rest, some breaks.

Honestly, for the past few days I have felt so much like hiding. I have felt like being done writing or sharing my journey & just keeping this life all to myself.

I have always found timing to be amazing.

Because, while feeling this way, I received a message from someone fighting a HUGE medical battle thanking me. Like what? My story has helped her, she said. The way that my daughter & I have faced all her challenges has inspired her. My words have encouraged her. However, she inspires ME.

Yesterday morning I knew I was finding myself in battle; in a funk due to all the life & stress from last week. I could see it coming straight on. So, I pulled out a cute new notebook I have…because I always have cute notebooks on hand {like for real}.

I numbered the first ten lines; scribbled some additional thoughts & filled out the first few numbered lines.

1. a new week
2. Bear waking up to her alarm & waking me up who overslept
3. cold brew coffee
4. singing in the car with my girls on the way to school
5. a clean desk at work on a Monday
   

The other notes I scribbled were me truly tuning into my body: what it was feeling, what it needed, the symptoms I was feeling & the number level of my pain.

The other day on our way home from Ohio, Bear & I were talking about what the doctors found and our next steps. I explained to her that I felt like we were FINALLY, after 7+ years, approaching the finish line. This has been a journey. I have watched her go through so much in these years, held her hand through everything, squeezed the crap out of her every single time they took her away from me to sedate her for surgeries or procedures (over 12 times). But, she & I never gave up. We shed a whole lot of tears together but we always said “tomorrow will be better.” Now, we stand here so freaking close to the finish line because I’m a stubborn mama & never gave up on better answers for her. 

That list of things above? That’s my list of things I was grateful for yesterday morning. Not the big things. The small, little things in a day that we often miss or don’t stop to appreciate.

Here is the thing. I kinda felt like giving up this weekend many times. I wanted to crawl into bed, pull the covers up over my head & hide away.

But, we can choose to make good days. I can choose to love my life more than I hate my pain. I can focus on how much I hurt instead of focusing on all the things I’m grateful for.

I had to change my lens. We choose the lens we view through every day, every hour. Last week I refused to look through the lens of negativity while we hung around the hospital for days. I choose to focus on how blessed we truly are & how far we have come. Right now I could focus on how horrible my symptoms are lately, how incredibly swollen my foot is & it never goes down anymore or the fact my mobility is suddenly horrible.

Instead, the lens I will view through is one of gratitude. So, today, I will make my list of at least ten more small things I am grateful for & I will love my life. Honestly, every day is a battle living life with this disease but at the end of every day, I might have CRPS but I just cannot let it win my life.

One of those blessings the other day was my husband surprising my Bear with the foods she was CRAVING during those three days of no foods! Only Tony’s bacon because his is the BEST according to the girls & a loaded baked potato. Love is what we came home to.

What lens will  you look through today?

Until Next Time~