My out-of-body feeling continued while I was in New York. I tried to feel but I was numb. I continually longed for the end of all of this, to finally be able to feel again. I think this state of numbness was a form of self-protection, a way to get through what was to come. (Nami's Neurosurgeon Explaining the Surgery Process on "The Doctors")
I tried to keep busy while in New York. I wanted to stay occupied with activities to keep my emotions from taking over my body. Thanks to my unbelievably supportive family rotating through, we had at least 3 adults there most of the time. This allowed each of us much needed time away from the hospital. My family also provided safe and consistent care for our other son while we were away. It was nice to have different family members always arriving in New York because it gave me something to look forward to and allowed me to experience some of New York. This helped make the time pass quickly.
|Riding w/ Aunt Jill on the subway|
|Cousin Maddie and Uncle Ben at GMA|
|Walking Central Park w/Papa|
One of the things I did with Salesi, my Dad, and Nami (the day before his surgery) was go to the 9/11 Memorial. I had been on a prior trip to NY, but Salesi hadn’t seen it. After the half hour or so that it took to get through the line/security check-points, we were able to enter the memorial.
I was overcome by an immediate flood of emotion which took my breath away. I walked through the first part of the memorial with my family, but soon the build-up of emotions was so intense that it became debilitating. I quietly found a secluded area, sat down, put my head in my knees and bawled. It was the first time my heart was able to REALLY FEEL some of the extent of the gratitude I felt for all the sacrifices of my family, doctors, friends, students and strangers on Nami’s behalf.
|At the 9/11 Memorial|
My level of my exhaustion increased through each procedure and throughout Nami’s hospital stay. (Posts of Surgery Updates on Nami's FB Page...July and August) I kept putting one foot in front of the other. I was so dazed that I couldn’t demonstrate the emotion I felt as my son went into a status seizure and nearly stopped breathing. He had at least 10 medical personnel working on him, trying to get him out of the seizure. I stayed by his head, held his hand and talked him through the entire thing, like I had done on so many previous occasions. The medical personnel were near bagging him multiple times as his oxygen levels plummeted, but luckily he kept breathing. The seizure lasted well over an hour, but was most intense for about an hour. When it was over I couldn’t cry, I couldn’t show my relief, I couldn’t show any emotion.
One of the problems with being at this level of exhaustion and having the inability to show emotion is that I was irrational. When all the visits from my family were over, Salesi and I were left in New York for almost a week with Nami, waiting for him to be cleared to come home. I wanted to keep pushing through, making my days busy, but Salesi’s reaction to his exhaustion was the desire to sleep. Most days Salesi somewhat accommodated me before returning to the hotel to nap, at which point I would take Nami and go do something else.
|Thanks to Friends for Free Tickets!|
|At the Aquarium|
|Under Brooklyn Bridge|
|Riding a Ferry on East River|
One night I returned from being out with Nami and Salesi wanted to go workout in the gym. I was so drained and couldn’t stay awake to keep the rambunctious Nami in bed. He had escaped out of the hotel room on so many occasions since being released from the hospital that I put the guard-lock on for fear he’d leave and I would be asleep when he did.
I fell into such a deep sleep that I did not hear Salesi when he returned from working out. According to Salesi he knocked and knocked and yelled into the room to try and get my attention. He finally went and got security for help when I didn’t respond. Nami came to the door and was yelling back at Salesi and the guards couldn’t figure out why Nami wouldn’t just open the door. Salesi tried to explain to the security that he was severely autistic and nonverbal, that he just had brain surgery and that’s why he couldn’t open the door.
At this point, apparently everyone in the hallway was awake, looking out their doors at the chaos that was outside my door. Salesi feared I was dead and that he’d be accused of murdering me. The guards were getting ready to break down the door when they finally got a hold of the one security guy who could open the door despite the guard-lock. They got it open and Salesi came in to check if I was alright. Once he realized I was okay, he told the security and they left.
My version: I was sleeping soundly when all-the-sudden Salesi rudely yanked me, turning me over while frantically asking, “Are you okay!?!” I was so annoyed with him for bothering me I responded, “What’s your problem?” at which point he repeated, “Are you okay!?!” I replied, “I’m fine. Let me sleep.” I did not get the full version of events until the next morning because I could not stay awake to hear anything he was saying.
With Salesi and me at the helm, we are lucky we made it out of New York in one piece.
|Leaving the Hotel|
|We Made it Through the Flight!|
|Awesome Friends Decorated Our House|
After ALL this…the months of preparation; the strain emotionally, mentally, physically; the level of exhaustion I’d reached…I thought that we would return home and things would just get better from here on out. I knew I would be recovering for a couple weeks, but life HAD to get better.
Imagine my shock and disappointment when this did NOT happen. My exhaustion, stress, and anxiety actually all increased. “HOW COULD THIS HAPPEN?!?!” I couldn’t wrap my head around our new reality.
The good news: Nami’s seizures drastically improved.
The bad news: Nami did not sleep, he screamed and cried all day long, he pounded on the walls and doors when we put him in his room to sleep, he hit and kicked me all day, every day, he destroyed everything in the house, he found ways to smear his poop everywhere just about every time he went (unless I noticed it and changed him immediately), he threw anything and everything he could get his hands on at me including toys, toy chests, plates, forks, and once a sharp knife whizzed right past my eye (I still don’t know how he got a hold of it). He was so unhappy.
This was NOT supposed to happen! Our home was a chaotic mess, no one slept, we hardly ate, bills piled up (including hundreds of thousands of dollars in medical bills). Up to this point I had survived. I had been able to put that one foot in front of the other. Now I was falling apart. I got sick. I could not function. But our lives continued on in this 24/7 madness. See HOW TO NAMI-PROOF MY HOUSE
I can’t count the number of times I just wanted the earth to open up and swallow our house whole with all of us in it.
I eventually had to return to work, but I barely made it through my days. What I thought was impossible happened: I became even more exhausted. I was desperate to find answers to help Nami. We consulted the doctors in New York, we visited the neurology team back home, we visited Nami’s geneticist, we had a sleep study/eeg done, we had a brain MRI done, we scheduled more testing for a possible second brain surgery and were finally able to make an appointment to see a psychiatrist. NO ONE AND NO TEST HAD CLEAR ANSWERS FOR US!
We worked with Nami’s doctors to try and help him sleep. His iron was low so we added an iron supplement. We tried different sleep meds. I had so much hope in each step we tried that I would convince myself that it was working for a day or two. Then reality would sink in: things were not improving.
Nami’s behavior was uncontrollable. No one knew what to tell us. No one could ease our situation. Was it ADHD? Would we have to add yet another med? Was he still having too many seizures? Was he in pain? Was he just too frustrated because he can’t talk?
Months went by without any improvement. I was beyond a zombie state of being. I couldn’t connect with my kids. This was unfair to them. They were both so unhappy. I’d go to work and come home and sleep. I avoided going out to shop or run any errands because I was too beat. On the days I didn’t leave the house, my hygiene left much to be desired. The only other person who knew exactly what I was feeling was Salesi and he was as bad off as me. We were of no help to each other because neither of us had anything left to give. I’ve never felt more unhappy or miserable in my life. I would often cry out, “This was NOT supposed to happen! The surgery was supposed to make things better!"
I finally resigned myself to never feeling happy…I mean really happy, again. I truly believed this was my new reality and it was not going to change. Anytime someone mentioned how we, as humans, should be trying to be happy in our lives, I’d cringe and think, “Sure, other people can find happiness, but not me…not in this life anyway.”
I was a slave to my life. I had no agency. I was doing everything in my power to help our family’s situation yet each day brought on more strain…more trials…more tragedies. My sorrow was too much to bear…even more so than any other time-period and trial I had endured in my life. I was stuck and my power to choose anything for myself was gone. There was no end in sight…no hope…no happiness.
I tried over and over to accept our new reality, just so that I could endure it. I wasn’t enduring it. I felt so desperate, “Will I ever get out of this darkness?” I no longer wanted to live. I prayed...begged...for a tragedy take all of us at once. I could not see any other way out.
Generally throughout my life, it’s hard for me to feel truly broken for more than a couple days at a time. But this? It was week after week after week into months on end. “What lesson is to be learned?” “Where is the positive take on this?” I could not find a single one.