Monday, June 11, 2018

Jhd awareness

Juvenile huntington's disease is harder than hd. It ripes family's apart at such a young age. People with hd give there children 50% of getting hd. You don't know if your child will have juvenile hd until it happens. It's my biggest fear that my kids will develop jhd and having their lives ripped apart. I like for signs of jhd all the time. As I'm starting my hd journey at 32 it's hard enough for me but to see my kids develop it while they are kids would tear me apart. 13 years ago when i started my family i wish i knew what i do today and i would make sure they had no chance of having hd. Hd free chrildren. I feel guilty everyday that i gave my kids a chance at having these horrible disease. Not to mention the crap they are going to go through the few years while hd takes my brain and body. And they won't understand me.

Sunday, June 03, 2018

My wish/dream

I wish for $5000 to $10000 for our car and caravan (we are building).  We have been trying to build our caravan for 3yrs. We can't afford a newer one that fits us 6. We have been paying off our 1st car loan then we had to renew our car loan to buy a new one cause our old we were constantly putting money into it. And  now our new car is doing the same. It's a neverending story we our cars.
Our dream is too make memories with my 4 kids by traveling Australia until i need to be put into full time care. I feel that while the kids are at school i only get to spend a few hours before and after school. Homeschooling while traveling i could be with them fulltime and make many memories with them before huntington's disease takes my brain and body. There isn't enough time left before i can't tell them i love them and hug them. Days just fly by and i don't feel i have done enough.
I want the next 5 to 10 years to mean something not just letting time fly by that's why we brought the caravan 3yrs ago but on limited money we can only do so much. I feel so torn today. All i want is a safe car and caravan to travel Australia and make memories with my family.