Wednesday, March 20, 2013


I finally started going to therapy last month. I have done a lot of reflecting as I’ve tried to concentrate more on getting myself better. I have been writing in my journal more. I was reading through some of my more recent journal entries and came across some that represent some of the desperation I was feeling: 

January 20, 2013: I can’t put on a happy face anymore. I don’t know that there is an ounce of happy emotion in me. Intellectually I know the things that should be making me feel that emotion, but it’s not working. I’m numb. I don’t care if the world ends tomorrow. I want something…anything…to take me from the misery I feel. There are so many kind people that are willing, and do help. They help A LOT. Why is it not making my burden feel lighter? Does that make me not grateful? I am so grateful for their help, but the help doesn’t take away my pain.

Oh how I love Viliami! I wish so much to relieve him from this disease. I wish I could be more patient with him. I lost my temper with him multiple times yesterday. He woke up having multiple seizures that were interfering with his breathing. I gave him Ativan because it is longer acting than his other rescue meds. It successfully stopped his seizures. What followed was about 11 hours of constant rage. He was inconsolable and uncontrollable. I spent much of the day in my bed while Nami screamed, cried and kicked and hit me. I couldn’t move. This went on for hours.

Salesi had to go to work, leaving me alone to deal with this. Oh the pain Nami must have felt to be able to carry on like this. I’m such a bad mother. I continually lost my temper today and yelled at Nami to stop…this poor boy who wanted out of the situation more than I did. There was nothing I could do to help. Multiple times I carried Nami kicking and screaming into his room. I almost dropped him each time. I put him in his room and shut the door. I could hear him kicking the door, running into the walls, and screaming and screaming and screaming. Why couldn’t I help this poor child? Oh the guilt I feel. Why can’t I feel better? Why can’t I be more patient during this time? 

I should have called someone to at least come pick up Kope, who ended up being neglected all day long. At one point he found his way on top of the piano and put hand sanitizer all over his hands, clothes, hair and face…even in his eyes. I yelled at him even though it was my fault. I had shut my kids out of my room for about 10 minutes while I lay on my bed, trying to breathe. I ignored Kope and then got mad at him. I’m a terrible mother. 

Somehow as I write this, my burdens do feel lighter. Hopefully the Lord will forgive me for yesterday and hopefully I will be able to do better today.” 

January 27, 2013: “Although I trusted I would not hurt myself, there have been many days that I no longer wanted to live. I don’t understand exactly what suicidal people feel, but I understand complete helplessness and lack of desire for life. I understand how it feels to be incapable of doing what you know to be right, no matter how simple the steps may sound to someone else.” 

I can’t believe this is how I was feeling just a few weeks ago! There have been a handful of days this past couple of weeks that I have felt true peace for the first time in years…not the manic happiness that I usually feel, which isn’t true happiness. 

Despite a few scary seizures, it’s been a great few days. Nami has only had about 20 recognizable seizures a day compared to the 300 he was having just weeks ago.

Nami’s therapy is going well and I have felt relief as we are transitioning to a state program and will not have to come up with ways to finance it for at least the next year. Nami is talking more than I’ve ever heard him talk. He said his longest set of recognizable words which was, “play…play…let’s go…fun!” Every once and a while Nami will say a new word that I’ve never heard him use before. The other day Nami repeated (one word at a time), “I am going to school today on the bus!” 

Nami and Kope have had moments when they have played together like I see other young boys play. A couple days ago they actually went into Kope’s room together to play. They shut themselves in the room and played for about 12 minutes before knocking on the door and calling out, “Annie…Annie…open!” Then Nami watched 5 minutes of a show. I actually had time to scramble an egg and eat it without my kids crawling on me, screaming and trying to steal my food! 
 We were able to take Nami to part of church on Sunday for the first time in months. It wasn’t easy, but he actually did alright and lasted for 2 hours in his different classes. 

Although Nami is having more violent tantrums this past 4 weeks (since weaning him off his 5th anti-epileptic med), I feel more calm and patient during them. I am a better mother as all the help I’ve been receiving, the efforts I’ve made to take care of myself, the weather getting warmer and sun shining, have all collectively worked in helping me feel peace. I hope that even though my future trials will likely be much more difficult than what we’ve experienced so far, I hope I won’t hit such lows as I have in the past.


  1. I love you for writing this and for all that you do. I'm so glad you started therapy... In fact, I can't believe you've made it this long without it. I face nothing like you do and sometimes consider going myself. It's amazing to see the journey you have all been on for years. The way you have overcome obstacles as well as the way you are still fighting many of them. When you talk about nami being free from the disease I can't help but cry cry cry because it truly is unfair that innocent children and families have to face this. I just know that one day it will be made right and have to cling to that or things get too dark and gloomy. I love this post (and All your posts). Sometimes I don't comment because I don't even know what to say... Anything would seem so insignificant to what you are writing about. But, you are a warrior mother. A true inspiration.

    1. Thanks Brianna! I ALWAYS appreciate your comments...nothing you say is insignificant. I really appreciate your friendship even though I'm sad we don't get our regular visits anymore. =)

  2. Wow, that was really powerful. Not that you need more things to do in your life, but you should really think about compiling your blog posts into a book at some point.--Jon

    1. This is a huge compliment coming from you, the veteran writer. If and when I write a book, I will need your guidance!

  3. You express yourself through writing beautifully. It is wonderful to hear that you are able to feel some peace.

    1. Thanks for being instrumental in helping me feel better!

  4. So glad January is over! Bring on the sunny-shine. (And please CALL ME ANYTIME, or you're gonna be in a huge heap of trouble.)


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