Grace

15 Feb, 2024

Yesterday was a bit hard. We had to travel an hour and a half to my little one's neurologist for a follow-up for her MRI, genetic test, and EEG. Some of the tests showed a possible genetic marker for epilepsy as well as brain activity that shows the possibility of more seizures. It's been 9 months since the last seizure. That makes me hopeful. But I promised myself to be more honest about things moving forward. And to be honest, I must admit that there are other feelings mixed with hope. For one, a loss of innocence... of knowing that either I or my husband have encoded within our bodies instructions to have seizures. He had a few fever ones at 4 but nothing else. I don't think I ever had seizures, but the reality is that I can't say that with a full guarantee. As I mentioned before, I forget much of my past and there's no one I can ask. Or at least feel at ease asking. We have our children with hope and sometimes we pass things to them and I guess that bothers me. I would never regret a single second of my daughter's life. But I feel a faint guilt nonetheless. I also feel a subtle sense of disappointment. The news we got wasn't worse. Dear God, it could have been. But to know that the possibility of seizures lingers in her makes me feel vulnerable... vulnerable because I cannot fix my child's vulnerability. This is yet another reminder of how much we are at mercy to life's whims.

The trip overall was a bit exhausting too. This was our third trip so I was able to cope knowing in my head what I needed to do. Here's my current script:

  1. Make sure I didn't forget anything + take too much
  2. Travel
  3. Park
  4. Let her play in the little playground to release pent-up energy after the drive
  5. A quick trip to the gift shop
  6. Go to the front desk (look normal! Smile and listen carefully)
  7. Register in the kiosk for the paperwork (don't space out, someone might talk to me whilst hyper-fixated on the screen)
  8. Go up the elevator
  9. Scan the paper to check in to the actual appointment
  10. Wait (don't look awkward!)
  11. Vitals + Talk to Doctors (the first doctor always seems a bit... salty and the second one is doubly nice, as if to make up for the other one)
  12. Go to the desk for checkout (remember to look normal and focus on hearing the desk person!)
  13. Make sure I didn't forget anything (it's a thing, I know)
  14. Leave the building and locate the car (proud that I remembered)
  15. Travel

And all the substeps in between. The first time we went I didn't know the steps and my heart wanted to leap out of my chest. This time was better, but I am starting to be more aware of myself. Today I know that I am still a bit drained from it and understand the reasons. And most importantly, I can show myself grace. Grace that I am enough, that I did enough, and that I must scale back slightly to come back stronger. Grace that I am doing all this despite all the wounds I am nursing. Again I will be honest. I keep crying. Out of nowhere. Maybe it's a stim of sorts? I'll have to look into it. But I want to show grace and just let the tears flow, because I need them.