A Very Bumpy Bus Ride…. Yea…

I’m the youngest child in my family, I wasn’t the normal go along with everyone youngest, and when I was little, my twin sisters loved the book “A Very Bumpy Bus Ride” it was a favourite among all of us but they really loved it. One night as my mom read it, It made me think, about two nights before this a spot had been found on my lungs, I don’t think my parents knew I knew… But as a small four year old child, I heard and I listened, I knew it could be bad…

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I have always been a thinker, daydreamer, nightmare having, I get it from my papa, but I like it.. I’m glad I’m this way…

My life has been in my mind a very bumpy bus ride… Sadly this ride sometimes I lose the fish out of the bowl and sometimes I go smoothly down the road but other times the bumps throw me out of the bus but somehow-so far- I have ended up back in the bus..

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Everytime my Auvi-Q or Epipen come into play the chances of me dying are still pretty high, every time I have status epilepticus seizures I have a chance of dying, brain damage, respiratory failure, aspiration pneumonia, or coma. Every time my body attacks an organ the chances of that organ failing are very high…. My body is failing me…. But I’m not failing it…

Everyday things can kill me, a nut, a seed, a fruit, a veggie, so many things… But it’s still a bus ride, and the bus is still going… At the end of the book things turn out good, the book more so taught me to enjoy the bumps in the way.. Enjoy the things that are a pain… Enjoy the bumps because maybe just maybe the bumps aren’t bad they are just bumps and if my bus breaks down.. It can’t always be fixed but I’m sure I can find a way to adapt…

I like this very bumpy bus ride…. Because I’m not on this bus because I’m bored.. I’m on it for life… If a treatment comes and makes my life less of a very bumpy bus ride, I won’t turn it down, but if that treatment never comes…. I’m ready… I’m trying to be… I will live my life not like I’m dying but like I’m living… I will live….

Thanks for reading…. I’m going back on the very bumpy bus if you need me…..

Shayweasel out….

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