When I stand up, I'll be strong again.

Sitting in my closet, I wasn't close enough to the wall to lean against it. I put my hand down to adjust my position. It's wet. I had soaked the carpet with my tears. Not 10 minutes ago, my husband found me lying on the closet floor in the fetal position, sobbing into my hands. We had just done family pictures today so my "full face of makeup" was smeared all over my cheeks with my falsies popping up on the corners. 

"Honey, are you okay?" he asked. 

"I miss Everly." "Did something happen? What brought this on?" 

"I just miss Everly. She was so close" 

I am pretty sure he didn't know what I was talking about, so I elaborated. 

"A year ago today, she got moved to the third floor and out of the CICU. She was doing so good. She was so close." 

Drew responded by reminding me of all the things we feel and believe to be true. Everly is free from pain. It was her time. We will see her again. 

"We know that it was her time to go, can you imagine if she would have passed away after we brought her home?" he reminded me."If we would have brought her home, that would have given us more time with her." 

After rubbing my back and allowing me to sob for several more minutes, he asked me if he could do anything for me. I told him that some tissue paper would be great, as snot ran down my nose and I caught it with my sleeve. He handed me the tissue paper and told me he would help me up and we could get ready for bed. 

"You can get ready for bed. I just want to lay here and cry for a minute. When I stand up, I'll be strong again." I said. 

Before he walked away, I asked him to hand me the lap top... so here we are... 

As I sit here recovering from what seemed like a month’s worth of tears that I have been "stiff-arming" away, I feel as though I have finally acknowledged the pain of this time of year. Every Jo Ostler lived from November 6th, 2017 to December 9th, 2017. Almost 5 weeks. After surviving two open heart surgeries, several procedures, and countless complications, she had finally turned a corner. Last year on this day, Dec. 5th, 2017, we were telling people with glee, that she would be home for Christmas. Little did we know, that wasn't in the plan for her. She passed away just a few days later from a heart attack. I still remember the moment the surgeon through his arms in the air and said "That's it, there's nothing else we can do". I was standing in the doorway of her room where they were trying to revive her. The staff dressed Everly in a cute pair of striped pajamas, and with tears in his eyes, Dr. Griffiths handed her lifeless body to me. Every staff member had tears in their eyes, just as I do currently. 

Fast forward, almost a year, Nov. 5th, 2018. About to celebrate, what would be, Everly's first birthday. I wrote in the notes of my phone, 

Celebrating Urban's first birthday.

Celebrating Everly's first birthday

  

"Laying here thinking about how fun Urban's first birthday was. I planned an entire fiesta. Nachos, sombreros and fake mustaches for all the guests, and lots of birthday cake! Urban even wore a shirt that said "UNO". It was the cutest.Tomorrow, I get to eat lunch at the children's hospital, and have birthday cake at a cemetery. Attitude is everything and I think that I have done pretty good to stay positive... but right now I am pissed". 

Tonight, while checking notifications on Everly's instagram page (I use to raise awareness for CHD and also show our life after loss), I got tagged in a post from another account. The post read:

The person who tagged me in the post said this: 

"If there is one thing that @meeteverlyjo has taught me over the last year, it would be this. You have been the most amazing role model in the entire universe. All the challenges you have faced and how you have continued to move forward still shocks me to this day. I know your year hasn't been easy but, I wanted to let you know you've been an amazing force for good". 

Honestly, I am speechless. I have never thought of myself as a "role model" or a "force for good". People say that I am "strong" but after almost exactly a year, I am learning that "strong" is relative. Everyone is on a different path and everyone has their own definition of the word. My mom is strong because she supports her husband who is disabled, all while going to school, and working full time. My sister is strong because she is an amazing mom to four kids, four step kids, and one with special needs (autism). My husband is strong because he puts up with my crazy everyday. I am strong because I got out of bed today. Miss Everly Jo is strong because she powered through multiple life threatening health issues, and rose above them {almost} every time.

Everly makes me strong.

Thank you for your continued love and support. Please share this blog post, so that we can raise awareness for Congenital Heart Defects and find a cure for these babies who deserve our attention.

If you would like to learn more about Miss Everly Jo, please visit @meeteverlyjo on instagram, OR click HERE to read an article from "Love What Matters".