Home Care

I am slowly figuring out things on here. Trevor is burnt and will have
to go to respite retreats. I am going to miss him so much. He will
take off for a week. We have never spent a day apart. This will be
hard. They want me to get some home support here. I am not ready. I
am petrified. I don’t feel I am that sick. I am still having healthy
days. This has been a hard day for me. A lot of changes happening
in one day. When Trevor goes I will go with his Mom. It is hard to
find the hope on days like these. This is where it counts the most.
When we have to make changes rapidly. This illness takes us. It
can never take our souls. Our fight. Our strength. It can never take
that, you don’t give in. Don’t let it claim that fire. That fire is all that
saves us. We need the fire to fight. We need to accept these
changes. Move on with a positive leaning. I will be sick and be
cured. A long with all of you. We need to believe a hundred percent.
I am getting sicker. We are all getting there too. We are the ones
that can stop us from worrying about it. We have HD. WE are the
ones that can live our lives. We have control. Take it back. Take back your power.