Sep

Stress, Tears, Challenges

I am terrified of school or leaving Mom or being alone with people I don’t really know.

I can’t really decide which it is, but each day I go reluctantly begging my Mother, crying with tears in eyes not to take me to school. I’ve even offered to go to her work and work hard there. Working hard is a value my parents have instilled in me. It often takes Mom a good 30 minutes to extract herself from my classroom while trying to pacify me and have all the other children hug her and tell her things.

I’ve noticed that Mom often leaves in tears and/or feels great frustration at having to get to work and do the emotional stuff with me. She knows I know and she knows I feel for her. What can be done?

I struggle intellectually, although I can do most things others do, I struggle to concentrate and my extraordinary willpower puts me in a difficult position. I have the standard appearance of ADD, however due to my extraordinary brain, I cannot be diagnosed with that, because a lot of the areas in my brain which would be responsible for that piece of information, don’t really exist. I cannot take meds as they raise blood pressure and that would be fatal for me. I asked Mom today if she remembered when I was lying in the bed alone? She asked me when and how little I was, I said I couldn’t remember expect how scared I was of being alone in that place (ICU at hospital). Mom’s heart broke again; I think I might have heard it crash into a million pieces.

Mom is worried at the moment that I am not up to speed. So Monday Mom and I played with numbers; we built a jungle gym downstairs and jumped from number to number. It was good fun. Then Mom had an idea – asking me what 1 + 1 was, I answered 2. She asked a few more simple questions and I answered correctly. She then asked the following: If a = 1 and b = 2 what is c=? Of course its 3 I said! Initially when Mom fell onto the couch, I did think it might be the fact that her head was lacerated by the ladder or maybe the fact that she got a log in her face playing with my hammock and me, but it was shock that I knew these things.

I spent the rest of the day building car roads with Mom and then when Mom went to water the garden, I decided I needed to dig a hole in the middle of the garden to catch the Backsoon from the Pooh Bear story. Needless to say my Mom thought it was cute enough to let me be. Dad is not a fan of the hole in our lawn. After a well deserved bath, I headed off to lend Dad support for the first owners meeting he attended (Special General Meeting to approve the rules). It was held in the garage as no one would give up their house. Anyway Dad managed to get a few points across, and it seems he has support from many of the other units. He met a couple who have a baby who is struggling in hospital at Sunninghill, and Dad offered Mom’s support to them.

Wednesday brought with it a teacher/parent meeting. The teachers essentially don’t know what I know. This is mildly confusing as I thought they were supposed to know. Some suggestions have been made and we are beginning to implement them. Wednesday was quiet and reserved with my parents spending a lot of time just talking to me asking me what school was like. They reverted to my OT, Doc Nicoletta and a number of other specialists, trying to find out what the right things are to do. A bit of a quandary as to my next steps about schooling, but nothing life threatening; that being said, we went to Unitas to get the digital angios we lost in the move for Paris and Dr Rodesch. I freaked out as we reached the hospital, screaming “I can’t do this, I can’t do this!” Mom covered me with a blanket, promised we were just collecting a disk. Mom could feel my heart racing I was so terrified so she got me a book and juice to help and told me we wouldn’t stop till we got to the office then a quick stop and all the way back to the car. Mom spoke to me all the way, and checked if I was ok. It was incredibly stressful as I knew this was the place where I’d had eight brain surgeries, almost died a couple of times, underwent chemical assaults on my body, and trauma to my soul and heart. I slept in the car, something I don’t really don’t do often anymore.

This being said, we still have to try and close the fistula in my brain and this is also a stressful thing for the folks. Where to start and what to do next is freaking my Mother out.

Wednesday evening there was massive excitement in the house (for Dad) as iOS7 was available for installation on our Apple devices. At 20:00:05 (not sure why he delayed for 5 seconds) he started the installation process on his iPhone and iPad. He seemed thrilled with the results. My iPad Mini followed and then Mom’s iPhone and iPad. Now we’re all sevened!

Mom debated a Thursday and Friday school day for me; I was always for the NO school thing. I went Thursday but the extraction of my Mom took about 45 mins, including carpet time and I almost broke when she arrived to fetch me. We missed the park play because Mom didn’t read her Whatsup message. OOOOOPS.

Dad was already home when we arrived back from OT. He and I played with some of my toys.

On Saturday we had to do the whole errand thing to the Post Office at The Wedge. Afterward we got our month’s supply of kitty food and treats for Mickey and Missy – I love pet stores. By then hunger had set in and we popped into Pane e Vino for lunch. Dad had has standard order – pizza, Mom chose capparcio and I had Garfield’s favourite – lasagne. I tried some of Mom’s capparcio, and fell in love with it. It seems that as a five year old I have a very refined palate. The things I really like are smoked salmon, sashimi sushi, XXXXXXXX, and now capparcio!

Afterward we popped into the new Oriental Centre in Rivonia. It was cool checking out all the gadgets and stuff. Granny joined us there, and then came home with us. What a bonus! She stayed for the afternoon while the my old folk snoozed. Granny and I played soccer in the garden and read stories. In the evening we watched The Incredibles – something I’ve got really interested in since Disney’s launch of Infinity. Apparently it occupies a very prominent spot on my Christmas list. Not sure if me or Dad are more excited!

Sunday Dad and I went to Yeesh in Woodmead for the morning. As we arrived there was a Minnie Mouse wandering around the parking lot! So cool. Inside it was really full, but Dad secured a table for us. I spent the next three hours, yes three hours, playing within only taking a quick break to shovel some food down, chocolate milkshake, and a wee break. I also painted a snail, whom I called Turbo, and made his shell blue, just like Turbo from Dreamworks. I proceeded to tell anyone who would listen that there was nitrous oxide (NOS) in his blood, hence the blue shell.

Back home Dad and I played Wii until our eyes were square. First we played tennis, then bowling. Next I beat a few guys up in boxing and then we ended the play with some relaxing golf. I didn’t finish the ninth hole as my ball kept going in the ocean – eventually the Wii told me to quit!

Well that’s it for another interesting week. Tomorrow I’m not going to school, as Tuesday is a Public Holiday, so it’s a nice loooong weekend.

Hugs,

Jay-Bee