This post today is inspired by Koreen Guillermo’s words this morning. The title is borrowed from her, as is this first quote:
“The faith that seems so easy in the sunshine wavers in the darkness”.
She spoke straight to my heart this Easter morning, and not for the first time.
This has been a week. Well, last week was. And the one before that, and the one…never mind. You get it. But this past week was a bit more roller-coasterish than is typical, and we do roller coasters with the best of them. Koreen spoke of rearranging furniture in your home, and how during the day it’s not problematic, but at night, in the darkness, it is no longer the safe place that it is in the light.
Our week was filled with therapy…OT, PT, Speech; filled with doctor appointments… Oncology clinic, neurologist, and suddenly, the pediatrician. Bad financial news hit, and then we were notified that not only were we accepted to the oncology camp session I had applied for, our travel would be covered in full. Up, down, up, down. We had Easter dinner yesterday because my mother is having surgery tomorrow. Ryan attended 4 Easter Egg hunts. Oncology clinic brought nothing unexpected.
But Thursday my furniture got rearranged. As a special needs mom, as a medical mom, you fall into a routine. You know what to expect, you know where the sharp corners on the furniture are, you know where the potholes are on the route to the hospital. Your GPS gets you to therapies, to clinics. And then the storm hits. The lights go out, and you are left to fumble through the darkness, trying not to fall into this new pothole the storm just created.
Ryan had an “event” Thursday. His exhibited some bizarre behavior, slept 17 out of 24 hours. This is not my child. His hands tremored. He was oblivious to his environment. I called the pediatrician’s office, hysterical. They said I could bring him in, but that I would have to see someone named Jessica. I responded that I didn’t know Jessica and Jessica didn’t know Ryan and then I hung up on the poor receptionist. She, bless her heart, located my pediatrician, who called me, talked me down, and told me to bring Ryan in on Friday morning. Which I did, and apologized to the receptionist while I was there. She does not make enough money to have to put up with that sort of ridiculous behavior. It is possible that Ryan had a seizure, a seizure not triggered by medication. This would be unusual, and it is not a direction I really wish to go. The neurologist’s office was closed Friday, of course, but I did reach the oncologist, who said that if there was further odd behavior, we would admit Ryan for observation, otherwise keep an eye on him, call the neuro Monday, and we will sort through it on Tuesday at clinic.
Ryan has been fine since then. Me, not so much. I was already stressed out, and the fatigue I witnessed Thursday sent me directly into a PTSD episode. Zero to 60 in 5.2. Do not pass go, do not collect $200. All the cliches. All at once.
A friend asked me yesterday how I was doing. My answer? I said “I don’t know. I don’t know where the line is anymore. I don’t know what is worth reacting to. I don’t know when something is really wrong. I don’t know what normal looks like anymore. I don’t know when my brain is lying to me.”
It’s dark, y’all. I’m scared. I’m trying not to let that darkness suck me in. Trying to reach for the light. Trying not to bang into furniture that isn’t where it is supposed to be. Trying to reset my GPS to find my way through. It doesn’t take much rearranging to set me off course…and the dark may just hang around a bit.
But it is in the dark when my God shows up. He is there, and He is constant. He’s not hiding, not on the opposite wall. Not in the other corner. But it is hard to listen for Him. Hard to stop stumbling around and to just be still and listen. Hard to wait to see where this is headed, how I will find my way through. While my faith may waver, I cannot function without it.
This Easter morning, I was reminded that the sun will come up. The darkness will recede. The storm will run out of rain. And whatever arrangement our lives are in when the sun comes back up, my GPS will figure it out.
Then again, my internal GPS can be astonishingly unreliable…
Smile! Happy Easter!!!