Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

The One that *Sees* You

The One that *Sees* You

The One that *Sees* You

Have you ever felt invisible? That no one sees the pain that you carry around daily? Has your pain ever been so intense, and you have stuffed it so far that you are numb to emotions? Have you ever been called emotionally stagnant or unable to feel things as they happen? Well, that’s me in a nutshell.

Trauma

Childhood trauma, young adult trauma, adult trauma, PTSD, whatever it is you may face. At the moment, I feel nothing. I’m always on mode go go go go go, and then once I’ve gone, I relax. Then, I cry and feel all the feelings. It’s horrible. I’m working on processing the traumas, whether big or small, past, present, or what I foresee.

Have you ever taken the ACE test? The Adverse Childhood Experience study? My score is 6. “People with an ACE score of 6 or higher are at risk of their lifespan being shortened by 20 years. ACEs are responsible for a big chunk of workplace absenteeism and costs in health care, emergency response, mental health, and criminal justice.”

Drug Allergy Testing

So, this past week, I had to take H back to the allergist at Vanderbilt. This time, not for seasonal allergies but for a Decadron Challenge. Doing this tells me whether or not he has an allergy to this specific drug.

Luckily, we had the same nurse as last time and the dr that we met via telehealth the first time. These ladies are so very lovely. They explained things to H and me very well. We had to leave early, and I got so turned around that we were almost lost.

This place is in a shopping mall—I kind you not. We had to go to a mall to go to the doctor. It is so weird. Add that to the fact we had to go up one escalator, down a thousand hallways, and up an elevator to get to where we were going. I was tired. He was getting anxious. We all know the drill.

10 Minutes Late

We got there just in time. The nurse called us back and said how she remembered us from the last time. She did all the things and got us to our room. H was behind me, twirling his shirt and hopping. I sat down, feeling defeated but stoic—Ready for this next test, next doctor, next hospital, next next next.

The nurse came over and asked to hold H’s hands. She looked at him and told him precisely what we would do. That nothing, today, would hurt him. She comforted him and asked him if he was okay. He said he was scared, and she softly assured him that there was nothing to fear. That touched my heart of stone.

Then, It Happened

She got him settled with the promise of Teddy Graham and power aid. Next, she rolled back to her computer and started typing something, asking me the standard round of questions. Then, she quickly turned her chair around and looked at me dead.

She said, “are you okay?” The statement was made with such sincerity that it threw me off. I was speechless. Then, I felt it coming. Tears rose in my eyes, and I gently said, “no.” She rolled over to me, patted me on the leg, and said that it would be okay and that I would be okay.

I Felt Seen

At that moment, I felt she could see directly into my soul. She saw everything that had been stuffed down and wanted to assure me that it was okay. I am okay. It is all going to be okay. I felt such comfort and calmness. Peace fell over me, and I could physically feel my body relaxing.

H must have felt something too on cue because he did his thing. Ever since he got sick, we have listened to Ms. Debbie. She has recorded about eight songs. He knows them all by heart and asks to listen to her because it calms him. He turned around and said, “can we please listen to Ms. Debbie?”

We both listened and praised God together. I am learning, listening, and trying to trust in the process. It is coming up on 4 yrs, and we are both tired. God, give us rest and heal his weary body.

Side note: he is NOT allergic to Decadron 🙂

 

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