I wanted to cry

Ashley R

It would have been very awkward though because my 4 year old was watching. I had just hung up the phone from one of my doctors in regards to yet another organ I now got to see a specialist about, and get tested on, and add more labs to. I felt very defeated in that moment of CHD world, which felt silly because I had been through so much worse.

I had a heart cath coming up in the fall, weekly labs to keep my INR levels under control, a pulmonologist appointment around the corner, and now…I had to get MRIs on my liver every six months. I felt like my body was failing me and there was nothing that could change that.

It’s a full time job sometimes. This road called CHD is one that is not for the faint of heart. I say this ironically, because my heart feels like the strongest and the weakest part of me. It is in the moments of overwhelmed that I have to remember from where I have come from and how God has carried me through the deepest pains and most scary things before.

I have learned invaluable things through every test, appointment, procedure, and even emergency open heart surgeries I have faced. In fact, now I walk into these things expecting to learn something new or to see opportunities to be light. That is what gets me through each step. “How can I be light?” “What are you teaching me, Lord?” I don’t want to squander any hardship that I face because I know there is a treasure trove of strength and wisdom that comes with each one.

One time, my husband and I were walking through a random store on vacation and the lady greeting us noticed my scar and asked about it. It sparked a whole conversation about her son and how he was facing his own CHD battles. She told me how encouraged she was by my story, and how pleased she was that I was out and enjoying life. Simply letting my scar be visible was all that it took to bring someone hope.

I think we can view our scars and our CHD roads as something that is horrible, and draining, and just downright unfair. Those assessments of it are absolutely correct. Or we can view it as something that provides opportunity, light, and hope to others around us who are facing their own CHD roads. No two CHDs are created equal, but not feeling alone is something so life-giving.
As I was leaving my most recent liver appointment to get home in time to pick my daughter up from 1st grade, the PA I have gotten to know well walked me out and she said something so needed: “You are one of my favorite patients, such a light and so positive. Hang onto that.” Be light because of your battles.

Don’t let the battles take away your light.