We pulled up to McLane Children’s Medical Center. It was a bit eerie driving up there in the wee hours of the morning. I’d consider myself a bit of an O.G. of the building. We’d had countless appointments there before… pulmonology, gastrointestinal, cardiology, nutrition, neurology…. but never at night… never to the emergency room. I slowly drove around the side of the building, to the the back where the emergency room was. Uncharted territory. Sophia’s eyes were sleepy but filled with curiosity. I loaded her up into her wheelchair, tucking a blanket around her. Deep breath. Trust. Trust. Trust. We rolled into the entrance and all eyes locked on us. It never fails. Wheelchairs are attention-getters. A little, adorable girl in a bright pink wheelchair? You might as well walk in wearing a bear suit.
At that moment, I slightly wished I’d placed a tad bit more effort on brushing my hair. Maybe applied a little eyeliner. No people, this is not the beginning of the zombie apocalypse. I’m sleep deprived from the last week of child illness and my most recent closet floor sob-session. I could only hope that the peace that God had filled me with would cover my unsettling presentation. I explained to the receptionist the situation and a nurse shot out from the back. I guess not breathing is a bit of a big deal in the ER?
Sophia showed no signs of struggle but her oxygen levels told a different story. She was hooked up to a nasal cannula and whoop! Her oxygen level shot up to 100%. Relieved, I also grumbled some. Had I not let our oxygen tanks go a week before… a WEEK before… I could have done this at home. As tests were ordered, I mentioned that we were at the doctor’s the previous day and a swab was done. They looked into it. Survey saaaays… RSV. After fearing this virus for so long, it was like a cuss word to my ears. Of course, RSV. An x-ray then showed the beginning of pneumonia in Sophia’s left lung. Deep breath. Trust. Trust. Trust.
We were moved from the 1st level ER to an upstairs, in-patient room. Antibiotics were started via IV and the high-flow nasal cannula remained on. My sweet Sophia’s face was once again slightly masked by the clear tubing. It made me stop to realize that, at one time not too too long ago, that was the norm. I positioned myself on the available sliver of bed next to Sophia, hoping to catch at least a tease of sleep. My wishful thinking remained just that due to the periodic nurse check-ins and my paranoia of accidentally ripping out Sophia’s IV.
We spent the rest of the day doing great. Sophia showed no signs of illness and kicked and played on the bed. She kept attempting to roll over. As excited as I always am to see her pursuing movement goals, I blocked Sophia’s attempts, not wanting an extended hospital stay. I was in good spirits too and could feel God pouring tons of enlightenment into my spirit.
My perspective was totally shifted. Had I NOT turned in the oxygen a week ago, I would have just hooked Sophia up to oxygen that night. An x-ray would not have been done, catching the pneumonia. My grumbling was now transformed into praises. I played “Intentional” by Travis Greene on repeat, alternating it with “Testify” by Need to Breathe. I felt so grateful. Not just for an x-ray but mostly for God’s peace and joy. If someone had told me at the beginning of that week that Sophia would have to go into the ER with RSV… well, I would be like the actress on Final Destination, padded room and all. I would panic and worry, much like what I was doing right before I finally realized I would have to take her into the ER. How cool, though, that God will walk you through those “I could never survive that” situations. Not only walk us through it, but then deliver it with a massive dose of peace and joy? No way. I wouldn’t believe it myself if I hadn’t lived it more than once. Yet, I still struggle when the hint of these situations peak over the horizon. (Sigh) Progress, not perfection.
The next day, the doctors came in and completely turned off the oxygen. As confident as I was feeling, my initial thought was,”Whoa! Whoa! Whoa! Easy there. How ’bout we take it nice and slow?” I had only experienced Sophia being taken off of oxygen with a gradual, slow wean years before, so this over-enthusiasm was a bit much for me. The doctors said we’d see what she’d do. Um, hopefully not turn blue? My eyes stayed glued to her oxygen sats for the next few hours. They stayed in normal range but even at 91, I considered hooking myself up to the oxygen. Breathe. Trust. Trust. Trust.
We were released by early afternoon. Just like that. All those tears and arguing with God, and we were now going home after just a day and a half. The Holy Spirit continued to nudge me to share my insights I had gained. I continued to give attitude back, insisting that my sleep deprivation left me struggling to make a comprehensible sentence. I eventually posted on Facebook. The enemy attacked as he usually does… “This is stupid. Nobody cares about your life. They have their own worries. That’s not God telling you to share. You’re just self-absorbed.” Ugh! I wonder if it’s still sinful to hate him.
I did return to the ER the following night, but we were never admitted. Sophia’s high 80’s oxygen sats showed their tail at the ER, staying in the high 90’s. After about four hours they unplugged everything and gave us the “You ain’t got to go home, but…” look. We had no further scares. Luckily this time I took her in with no fits. I was on a spiritual high… “Have your way, God!” Mmmmm… well, maybe with some detailed guidelines.
The craziness of the unexpected hospital stay took most the edge off of the week leading up to the twins’ birthday. Throughout the week, I still would think,” Wow, four years ago today, I was still pregnant and on bed-rest. I had no idea what was about to unfold…” About two days before their birthday, I had a minor sob-session. I knelt down in my kitchen where we buried a rock in the foundation. We had chosen the rock from the grounds of Chapel Dulcinea, where we had spread our son’s ashes. We had wrapped it with the Matthew 7:25 scripture and placed it at the center of our home with a huge cross. It was just a reminder that Nicholas was still here with us.
For their birthday, I made cupcakes and we lit a candle on two of them. As we sang Happy Birthday, I brought the lit cupcakes to Sophia. We told her to make a wish and, at least in our minds, gave her a moment to think of what she would wish for. Then I blew out both candles. Brian and I scarfed down the two cupcakes, along with most of the rest of the batch. We hooked Sophia to me in her Upsee and booty-shaked the night away… which was only for about another thirty minutes. Bedtime called. The next day, was pretty regular. Brian was leaving for an out-of-town training for the week so we prepped for that, squeezing in as much time together as we could.
With all the craziness, we still continued to celebrate the continued decrease of Sophia’s seizures. This requires some history to really understand the magnitude…. Sophia had shown continuous seizure activity on an EEG when she was 2 years old, but there weren’t any prominent outward signs of her seizures. The neurologist told us that the observed erratic brain waves were expected with her diagnosis and he expected for the seizures to worsen. A few months later, her arms started shooting out to her sides with open, extended hands. Her eyes would cross and then suddenly she’d relax and her eyes would go back to normal. A visit to the neurologist confirmed that her seizures had indeed worsened. After sharing my concerns about medications, the neurologist decided we’d begin her on a low dose of Keppra (supposedly a milder drug).
I couldn’t shake the feeling that her seizures would be resolved and that this wasn’t the answer to them. I felt cornered even though our neurologist was super laid back. I read and read and read. I researched and tested different oils on Sophia. No change. I found testimonies and contacted the cured. You’d be surprised how many strangers will take your call and spend thirty-plus minutes talking with you. One shared testimony came from a mother that had found herself feeling cornered as well. Her son was on, if I remember correctly, SIX medications. Even with the six medications, her son continued having seizures. She followed her gut and now had a non-medicated, seizure free little boy running around. Unfortunately, the oil protocol they’d use to bring his healing didn’t give us the same results.
I became overwhelmed, as I continued to research and gain no ground. Meanwhile, Sophia’s Keppra doses were being increased. The weight of the world started bringing me down. She was healed from these seizures. I knew it. I completely recognized that feeling from God when He spoke something clear into my gut. I just had to figure it out. WRONG! Not about the seizures… about me having to figure it out. In one of my tearful prayers for patience and clarity, God gently placed into my spirit,” Not by your hands, but by Mine.” He might have just been sick of my repetitive prayers, but it was exactly what I needed. I needed to recognize that I can research all day long. I can read about laser therapy, music therapy, oil therapy, movement methods and aaaaalllll the other millions of testimonies of brain injury healings. But unless I am fully tuned into the Holy Spirit, I might as well be reading about how to cook the perfect egg. Yes, knowledge is power. That includes divine knowledge above all else. I had forgotten that I am limited. God is not. I don’t know the details of Sophia’s future. God does. Although I know she will do all things, I don’t know how that will unfold. God does! He does because it is ONLY by His hands. That is overwhelming and comforting all at once.
So I stopped all my approaches and tried returning to ground zero. I stopped the oil trials, the zeolite detox, the naturopath appointments, the extensive researching, the testimony stalking. I made a promise to not take one step forward unless God told me to. Meanwhile, as Sophia’s seizures raged on and totaled about 40-plus a day, the neurologist wanted to switch meds. Sophia’s Keppra dosage was at the max, so the next option would be to switch to a stronger medicine. Knowing my concerns, our neurologist listed possible side effects. The red flags in my gut went bonkers! “Um, I know that I should be concerned about these seizures… but my gut says to worry about the side effects.” I struggled with the thought that I had read way too many articles on the natural approach of healing and that I was being an unreasonable, careless mom. The struggle is real, people! I just couldn’t override this gut feeling though. I get it. Western medicine saved Sophia’s life. There is a time for it, for sure. I’m convinced that knowing when it is necessary comes down to when God gives you that nudge. We all get it. We just don’t listen most of the time.
Our neurologist offered a reason for my feelings…. something along the lines of “So you feel that the side effects are possibly more threatening than the seizures themselves and because her level of disability is so great, further seizures with resulting brain damage would not make a significant difference in her progress? That is a valid point. Her heart rate and oxygen levels aren’t affected with these seizures, so…” He basically thought I was saying that Sophia gaining any more brain damage wouldn’t make a difference so we might as well let her have her seizures without adding medications and their side effects. Um, not at all what I was saying but he was coming from a good place. I vaguely told him about my gut feelings and how they had proved to be reliable in the past. He tilted his head, clearly thinking I was a bit nutty. Still coming from a good place, I think he essentially threw up his hands. He mentioned removing the Keppra, as well. As much as that is what I was eventually striving for, going cold turkey right away struck me with fear. I asked him if I could think about it.
Prayer scattered the fear and I followed up with an email saying that we would wean from the Keppra. We did. The seizures seemed to intensify some. I questioned my decision. I feared a massive seizure, sending Sophia to the hospital; having all the medical staff wondering in disdain why a mother wouldn’t have her child on necessary seizure medications. Or worse, a massive seizure that would cause massive damage… maybe even death. I prayed for clarity. I prayed for patience. I prayed for continued faith.
Sophia was able to begin school the following year. She would spend the morning in a Functional Skills classroom. Then she would ride a bus to a friend’s house. Talk about letting go and trusting. That could and probably will be a whole different blog entry. Her seizures continued. We had Diastat on hand, an emergency seizure medication in the case of a severe seizure. The teacher would record her seizures in Sophia’s take-home binder.
I could once again feel the nagging of the Holy Spirit. I hate to describe it as nagging but that is truly what it feels like after I push it off initially. It’s like someone tapping on my shoulder, saying, “Hey. Hey. Hey. Hey. Hey. Hey….” I needed to tell her teacher what we were believing for. Great, now the teacher and the rest of the classroom staff would get a glimpse of what a weirdo I was. I never know how talking about the Holy Spirit “telling me” stuff will register with people. I kept putting it off and I kept being nagged. Finally I decided to write a note. This way, I wouldn’t have to see the uncomfortable facial expression when I shared. I knew this wouldn’t be the only time we’d believe for something outrageous… so I wrote a note with a “We are believing for:” blank. I taped it into her binder, markered in “Sophia’s seizures HEALED,” and packed it in her backpack. The next day, I was a sweaty mess as I handed over the backpack. I kissed Sophia and scurried out of the classroom. I sat in my car for a moment. Was it too late to run back in and rip that note out? How silly of me. What if I was wrong? What if I was just wishing for the seizures to stop and that got mixed up with what I perceived as God’s voice? I was going to look SO stupid.
I stopped. What if that was God’s voice? What if I didn’t leave that in her notebook? Then when her seizures resolved, it would just be paid up to luck and happenstance. God wouldn’t receive the glory like He could if I stepped out of being a closet Christian; took the risk of looking like a fool for the chance of giving God some public props. “Okay, God. I trust you and I’d rather be wrong than deny you of glory.”
The months went on and her seizures continued. The teacher’s response was awesome. She shared that she was a believer too… sort of letting me know that Sophia’s notebook was a safe place for my crazy believing. Some days Sophia would have only four seizures during her 3-hr school day. Other days she would have fourteen. I wrote little messages around her seizure log, more for myself. One day, the teacher had written about how well of an eater Sophia was. I replied how a mere year and a half before she ate only through a feeding tube, how we had to believe despite how impossible it seemed, and how God was so faithful in bringing her eating to fruition. Then I drew a mountain by her seizure log and claimed that mountain to be moved as well. I started getting discouraged, feeling stupid, trying to figure out if it was worse to now rip the note out. Daily I would just write,” He is faithful. Hebrews 10:23″ On days that Brian would sign her notebook, I’d ask him to write it too. A few months passed. Her seizures seemed to be staying on the lesser side. On the first day that she only had one at school, the teacher wrote,” Only 1! Praise Him!” I was so filled. How cool that we had pulled in someone else on this part of our journey, believing with us, praising with us.
Fast forward back to her birthday week. The first day returning to school after Sophia’s hospital stay, her teacher was in awe of what a great day Sophia had. Her greatest praise report… “No seizures!” I laughed. How crazy. How Sophia. Although, she did have seizures outside of her school day, this was huge. For the next two weeks at school, her seizures ranged from none to about three a day. I was joyful but I knew what I was waiting for…. completely seizure free days. God is faithful and the best was yet to come.
To be continued…