Wednesday, March 20, 2013

PEACE



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.

Sunday, March 10, 2013

ONE OF THOSE DAYS

Yesterday was just one of those days…more like this week was one of those weeks. I feel like my days are filled with trying to stop one disaster while another one or more are well-underway. I am always a step (or many) behind my kids and my tasks are constantly interrupted by their dangerous or naughty behaviors. This past week started with Nami taking off his diaper last Sunday morning (which he now does on a consistent basis and streaks through the house). Unfortunately on this morning he had pooped and decided it would be fun to spread poop all over the walls, doors, blinds, bed, floor, etc. of his room. We found him dancing in his room, buck naked, holding his poopy diaper. This incident was representative of how our week would turn out.

Despite continually rearranging and blockading areas of our home to counteract the destruction level of Nami, he still finds his way under, over or through the barriers. He destroys any kid-proof zone I am able to conceive. Just this week Nami got a hold of scissors and started running around with them, he quickly divvied out and devoured the cupcakes that my sister Meridith had brought me for my birthday, and he continually pushed the lever on the refrigerator to release ice leaving a mess on the kitchen floor. They say necessity is the mother of invention, so why can’t I think of the inventions I need?!?

(If anyone reading is new to this blog, I explain more about our experiences with our son’s autism in these posts: STIMMINGA TORNADO STRIKES...NAMED NAMI, TENDER MOMENTS, and A SMALL ACT OF KINDNESS)

Nami and Kope are quite a pair because Kope has hit his terrible twos with a fury. During his tantrums he yanks himself over and over so forcefully that I have dropped him multiple times, resulting in his head hitting the wall, bed, molding, or any other object that is in his head’s way. He tries to disrupt anything and everything that I’m doing. This week he knocked Nami’s medicine out of my hands which then spilled all over the floor, jumped on the printer, unzipped and knocked down the guitars, jumped on the guitars (don’t tell Salesi), spilled water, played in the water, etc.

What does a typical morning look like at our house? This was yesterday morning:
  • 4:30 am: Nami wakes up, I try to get a little extra sleep and so I let Nami play in his room for a bit
  • 5:45 am: I finally relent and let Nami out of his room wishing I could go back to bed, I change Nami’s ENOURMOUSLY full diaper of both numbers 1 and 2 and get him dressed (luckily it all stayed in the diaper this morning as I am often doing baths and cleaning sheets due to leaks)
  • 6:15 am: I get breakfast and meds for Nami, then make sure all the chairs are tightly secured AWAY from the table which is pushed up against the counter as an extra barrier, I let Nami rock on his spot on the couch and make his typical noises, while I start the tasks for the day, until Salesi arrives home from working a 16 hour shift
  • 7:15 am: Nami squeals so loudly upon the arrival of his dad that he wakes Kope up who then starts screaming to get up, I get Kope who has also gone number 1 and 2, but SCORE for me because no diapers leaked this morning
  • 8:00 am: Salesi goes to sleep in Kope’s room, Kope tries to eat his breakfast and continually yells “NO!!” while Nami tries to steal his food, I feed Nami his second breakfast in order to get him away from Kope’s food
The next couple hours went as follows:
  • Kope spreads clean laundry everywhere. I make him clean it up.
  • The boys fight over the ball and end up pushing each other down. They both end up hollering and crying at my feet.
  • I shut the boys in my room while I try to gather their clothes for a wedding celebration we were going to. I return to find gum wrappers everywhere and my kids rushing to swallow the last of the evidence. This is the 6th time this has happened in three weeks! And no, I am not just leaving gum for them to find. This morning the gum came from a pocket of a bag I only use in the summer that I had tucked under my bed.
  • I react by locking my kids OUT of my room while I take a 3 minute shower. When I'm done I hurry and rush out to the living room, still in my towel, to make sure the boys are alright and I find this:
  • To clarify, these seemingly not-so-bad photos are of my barricaded portion of my kitchen (which Nami can now de-barricade…Is that even a word?) Anyway, the barricade was knocked down, the mixing bowl full of water from the sink was dumped all over the floor along with other dirty dishes, the leftover rice from Salesi’s dinner/breakfast was mixed in, clean dishes were pulled from the dishwasher and thrown all over the dirty floor, dirty dishes were put in my clean dishwasher AND my very clean children from their baths the night before were swimming in the mess.
  • I do what any good mother would do: yell at my kids and lock them in their rooms. (Well, I had to lock Kope in our room because Salesi was sleeping in his room.)
  • I slam the door and return to the kitchen to clean up the mess, come back to re-shower and find Kope has emptied the drawers in my bedroom and spread clothes all over the floor, mixing them in with the dirty clothes’ pile. He is cleverly sitting on my bed, typing away on my computer acting innocent of any crime. 
  • I continue my great mothering skills and yell, “That’s it!” I grab Kope and stomp right into his bedroom and yell at Salesi, “You’re just going to have to sleep in our room because Kope is in a time out” as I drop Kope into his crib. Never mind that the now sopping wet kids are lying in their freshly cleaned sheets!
  • I continue stomping about the house exclaiming to myself, “All I needed was FIVE MINUTES!!!” I hear Kope calling out in his fake innocent voice that melts my heart, “Sorry Annie, sorry Annie.” Nami is wailing from his room, “Daddyyyy, Daddyyyy, Mommy, Daddy, Papa, etc.” Then he starts banging his head on the ground uncontrollably and kicking the door.
  • I get somewhat ready and then go to fetch the kids to get them ready. I let Nami out first and go to get Kope. By the time I quickly grab Kope and run to find Nami, he had dumped my diet coke all over the bathroom and thrown the cup in the toilet. 
  • I’m finally able to get the kids ready and I put get the kids’ shoes on. Kope decides he wants Nami’s shoes, so he takes both their shoes off and puts on Nami’s. Nami screams because he thinks this means he can no longer “go”. I redo the shoes and Kope re-undoes them, and so the morning continues…
By the time we’re ever able to get ready to go anywhere, I’m so worn out that I no longer want to go. Nami is always crying to go, but then when we get where we’re going he doesn’t want to be there. I don’t have the energy to try and keep Nami somewhat contained in public because I’m already exhausted upon arriving. To make matters worse, Nami has recently stopped sleeping well again which has coincided with more violent tantruming. This week I picked Nami up from school to go to the doctor’s right when their snack time was starting. Needless to say he was NOT happy. He tantrumed all the way to the car which invited many stares. All I could think in my head was, “Yeah, my son is rolling around on the asphalt, screaming, kicking and banging his head. So what! He’s 50 lbs! What am I supposed to do?!?!?”

Although my arms are sore, my brain is fried, and I’m exhausted, I have to laugh as I recall this past week…otherwise I won’t be able to stop crying! Now I sit back and wonder, “Why am I not losing weight?!?!"
It's a good thing I think my kids are so dang cute!

Sunday, March 3, 2013

IT'S MORE THAN I CAN BEAR




I recently met up with one of my best friends from high school, Nicole. She’s endured a lot through her life, and I have always looked to her as an example of someone who was able to bear difficult situations with great strength. While talking with her I told her what a great example she had been to me in my life. I expressed to her how strong I thought she was and how I didn’t know how she had made it through all the challenges in her life. She replied, “I don’t know how I made it through either. I do know your family was a big support to me during my early years and was influential in my life.” Her sentiments reflected much of what I had been feeling.

Over the past few years I have complained to God many times saying, “This is too hard. You promised you wouldn’t give me more than I can bear!” Recently, after one of my desperate pleas, I heard these words so clearly in my mind: “You are right. This is too much for you to bear on your own. That is why I have surrounded you with so many wonderful people that are helping you through.” It’s amazing that Nicole expressed to me from her experiences the exact thing that was so powerfully manifested to me in mine: I cannot make it through life without the love, support, and example of others.

So many people have supported my family and helped carry us through our difficulties. It is impossible for me to adequately express my gratitude toward each and every one of them. I know that I have needed them in order to make it through our life’s challenges. Here are just a few of the ways that people have met my answer to prayer:
  • Our little family has received generous donations of gifts and money from family and good friends that have helped pay for Nami’s therapy and medical bills. Thank you for helping us with the resources to care for Nami in a way that we could not on our own.
  • My friend, Nicole, gathered freezer meals donated by her and her family and friends to help feed us. We have also had wonderful neighbors, family, dear friends and beautiful young women from my church who have contributed meals to feed us. To be honest, it has been years since I have really eaten dinner besides when eating at my parents’ or a family member brought me food. I have felt so much more energy as I’ve enjoyed each and every one of these meals. I have felt so grateful for the food that I started taking some photos:
  • I have had countless people spend time lending a listening ear, coming by to visit, offering to help with my kids, etc. There is a beautiful family who has been very persistent in helping me…thank you for watching my kids and for helping me clean my house (something that I have much difficulty getting to =). You have all made my load lighter.
  • I have to say that God must have known that I needed to be born into such a large family, 10 in all, because that is how many helping hands our little family has needed. They (including in-laws) each give of their time and resources to aid us. They are willing to continually revisit our needs and come up with new ways to assist us. They recently set up a family calendar where they sign up to come watch our kids so that Salesi and I can go on dates and to church.
  • I have had numerous students offer a helping hand, share kind words and bring me yummy treats. They are patient with my scattered-brain and bring so much joy to my life.
  • As I’ve stated in the past, I have been a private person throughout my life. Blogging is one of the last things I thought I would do, yet it has been extremely therapeutic for me. I have tapped into invaluable resources as I ventured more onto online communities. People from 45 countries have taken time to read my thoughts on my blog and offer me helpful advice. Thank you! I am especially grateful to those who are part of the TSC community. I would never wish TSC on any person/family, but it has been so comforting to be able to (because of the internet) share our experiences with those who know first-hand what our lives are like.
I have been naïve throughout my life in feeling that I was a very independent person. Accepting the reality that I am not as independent as I thought has not been easy because it has made me feel vulnerable, but I now know that I need others in my life. I have had to let go of my pride and take steps toward allowing my walls to come down. Thanks to those who have chipped and chipped away (or in some cases forced their way in) because you have helped me realize how silly I have been to refuse help. I have to say that I have missed out on much of the beauty of humanity by being so introverted and independent throughout my life.

I still have a lot of work to do on figuring out what “taking care of myself” looks like, but I finally feel like I am on the right path. I am not strong enough on my own. It is crazy for me to comprehend that I have needed the culmination of all this help, plus much much more, in order to start feeling like I will make it through. I have needed to understand that by not accepting help I am robbing Nami of the care that he needs and robbing my kids of their mother. Sorry to be so mushy, but I have been filled with immense gratitude and I felt the need to say thanks. I am grateful to all the doctors, therapists, medical personnel, etc. who care for our son and help us navigate life with TSC, but most importantly I am grateful to family, friends and even strangers who help me have the ability to endure.
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