Sunday, January 5, 2014

JUST CAN'T WRAP MY HEAD AROUND IT - PART I


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.

7 comments:

  1. That was a crazy summer. Love the post and the pics!

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  2. I stumbled onto your blog from a comment you made on someone else’s blog. Oh, my heart goes out to you and your sweet family. I have a 35 year old daughter with TS and I know how challenging that road can be. They have a saying with Autism that I think is just as true for TS: “If you’ve seen one person with Autism/TS, you’ve seen one person with Autism/TS.” Everyone’s journey is unique in many respects but we all seem to share common ground when it comes to sometimes feeling lost, alone, overwhelmed and undone. Even in the joy we can experience some of the same emotions because parents of “typically developing” children can’t relate to the “baby steps” that children with TS make. My daughter was diagnosed with TS before the internet, contact with the outside world and just at the birth of Early Intervention programs. If you ever need to vent send me a line…I’ll listen. www.gossamerflashes.blogspot.com email’s on the About page.

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    1. Thanks for your kind words Shanna! There is definitely comfort in meeting other families dealing with TS, although I wish no one would have to endure this disease. I can't imagine dealing with this diagnosis 35 years ago. You are definitely a pioneer for changing the face of the TS community to what it is today.

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  3. Just reading this is giving me heart palpitations. Glad to know you survived!

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  4. I just have to tell you Thank you for your blog and all your posts about your sweet little boys. My little girl just recently started doing the "head bobbing" thing, which seemed very out of the ordinary for her. So after calling the "on call" nurse at the pediatrician a few times and having them tell me I was basically crazy I started to do some research of my own and came across your you tube video. My little Quinn was doing exactly what your little boy was doing in the video. I have made an appointment for this afternoon to have her seen. But in the mean time i have been reading your blog and your experiences with infantile spasms. What ever we find out about my little girl I am thankful to have read your blog, you seem like a very strong mother and someone I could learn from. Thank you for posting all this and for telling the truth about all your feelings and experiences.

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    1. Thank you for your kind words! I'm sorry for your daughter but so happy that due to your mommy instinct you didn't give up and continued to research. Infantile Spasms are so tricky because so many in the medical field miss diagnosing them which can be so detrimental. Please feel free to inbox me on my FB page if you ever want to chat or if you have questions. I'd love to be whatever support I can for you. Sending thoughts and prayers your way.

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