Tuesday, January 28, 2014


Note: I wrote this a couple months ago but I haven't felt like it was the right time in my life to actually post it until things had improved. This post contains what I was experiencing at the time. I am doing much better now.

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
                                                 Eating w/ Mima                                                    Aunts Lauren and Meridith at my bedside

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
I always knew how grateful I was in my head but I hadn’t allowed my heart and body to feel it. This memorial has a spiritual feeling. It is such hallowed ground where so much service and dedication has gone to honor the victims. This site allowed me to finally be able to connect with some of my feelings. I knew after about 15 minutes of heart-wrenching, body convulsing crying that I’d better find my family. After leaving that spot on the ground, I put on my sunglasses, closed back up and went right back into survival mode.

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
 Coney Island
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.

Sunday, January 5, 2014


I tried to describe how exhausted I felt before going to New York in a past blog post Miraculous May - Part II gratitude. I’m shocked that my exhaustion actually increased after school ended last year. I didn’t have words then, nor do I have them now that adequately describe how I was feeling before leaving for New York for Nami’s surgery this past July. I will try to represent it with some stories.

I was excited for school to end in May so I could fully concentrate on getting ready for our trip without having to work. I was so worn-out just trying to finish up and survive the last couple of weeks of school that I had difficulty moving for the first few days of summer. I could not pull myself out of bed. I was discouraged, but I knew I still had a month to get ready for New York so I didn't freak out too much.

A week and a half into my summer our aunt passed away. This particular death was unique because she’s my mom’s only sister and she never got married or had any children. Unfortunately my mother was out of town when my aunt passed. We wanted to help her out so three of my siblings and I went to my aunt’s apartment and spent an entire Saturday (the second of my summer) cleaning things out. This was no easy task. It was actually quite therapeutic for us, though, and I was glad to be a part of it.

I was also glad when we were done because I was emotionally and physically drained and looking forward to coming home and going to bed. Instead I came home to a broken freezer with hundreds of dollars of ruined food and a giant mess. There was a disgusting mixture of melted ice cream, fruit bars, meat juice and who knows what else all over our garage floor. I got my kids fed and in bed before spending hours cleaning up the mess.
The now very clean, broken freezer
The funeral arrangements and settling of affairs was all left to my mother. This was a big load for her to carry and so the next week was spent helping my mom. The funeral was on the following Saturday (the third of my summer).
Eight Siblings
My summer was getting away from me and I was not ready for New York: working out insurance, travel, food, lodging, help in NY and for our other son, items needed, and on and on and on. After the funeral I told myself I was going to commit myself fully to getting ready regardless of how tired I was, knowing that we still had one big family event coming up…a wedding.

I did allow myself one fun night, a girls’ night the Tuesday following the funeral. Everything was arranged with the babysitter. I just needed to give Nami his medicine. Part of his meds was a concoction of 3 anti-epileptic meds, all at max doses for a 50 lbs child. I found the open mouth and pushed in the meds. It was half way in before I stopped in horror and started screaming and crying as I realized I just gave his medicine to Kope (half Nami's size and completely healthy).

I frantically called Kope's pediatrician (my dad) who could not comprehend anything I was saying. After some incoherent conversing I finally left for the emergency room. I was hysterical as I waited for my dad who never showed. I had misunderstood. He was working and couldn’t meet me there. My dad and I finally decided that despite what poison-control suggested we’d wait out the next 8 hours at his work: it was more comfortable there, he had the medical equipment we needed if Kope ended up having breathing problems and it was located right next to the hospital so we could get there quickly if needed. Instead of knocking him out like they “should”, the meds seemed to make Kope extra hyper which led to an extremely draining few hours. I guess Nami’s not the only one who is medicine resistant. =)
While at the office, having successfully ruined the only "night off" I would have the entire summer, I received a call from the babysitter (who had remained home with Nami) saying my husband’s family had arrived from California. (They were the ones having the wedding...his sister’s son was getting married). I had nothing ready for them…no food, no bedding, NOTHING. (Salesi works in the evenings, which is why he was not there.) There welcome to my home was watching Nami and then getting to see how awesome of a mother I am by giving Kope Nami’s meds. They are very kind and reassured me they were fine.

This incident with Kope represents how frenetic my head was. I felt so horrible that I was so out of control of my body and my actions that I made such a dangerous mistake. I beat myself up over it for days and still feel ashamed about it. There was nothing I wanted more than to be in better control and to be more organized. My life was deciding its course for me and there wasn’t a thing in my power I could do to change it. This is a gut-wrenching thing to endure. It is immobilizing. It made me feel like I was a slave to a life that I had no choice in and no ability to change.

There is no way to describe a Tongan wedding, so I’m not going to try. This is something my family looked forward to and although busy, was a bright spot at a difficult time. I will just show what was happening in our home over the next 5 days before the wedding on Saturday (the fourth of my summer).

 In-laws had spent weeks gathering blankets, tapa cloths and mats...here's some of the preparation
Good thing we bought a new freezer

 My in-laws spent days gathering/storing food

Brother-in-law builds tent
 All-night prep with the help of over 50 people

 Cooking begins night before wedding and continues until the eating

 Over 20 pigs were killed and roasted at another location, an all-night job for many more people

I now had one week and only one Saturday left that Salesi could stay with the kids (his day off) while I got things done before we had to leave our home for six weeks. I had an impossible amount of things to get ready. By this time I no longer felt present in my body. I had felt this way a good amount of time in the past, but now the feeling was constant. It was like I was out of me, looking at me running around like a maniac…maybe kind of like my body was in shock?

I’m not sure how much I ate or even showered that week. Gross, I know, but it demonstrates my state of mind. Understand this is coming from someone who is a germaphobe and can’t stand the feeling of anything being dirty. I know I barely slept. I don’t know how, but I pulled it off, even in spite of another medicine emergency where Kope drank who-knows-how-much Benadryl (this was on Salesi’s watch) and gave my dad the opportunity to come hang out with us for 6-8 hours to save us from the emergency room...again. But, we MADE IT. All my work, a lot of help from others, and a lot of faith got us to New York.
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