As the LO and the Caretaker, we are both overwhelmed in different ways.
For my LO, every day and every moment must feel overwhelming. The things that define him are there in some opaque fog that clears in random and unexplainable moments and other times completely blocks his view. And the fog will get denser and denser and denser over a timeframe that we have absolutely no way of predicting.
For me, the Caretaker, I am encased in a invasive fog that seeps into every crevice of every day. It is odd that I forget the ever-present haze is there sometimes and I talk and make plans like our life is the same. Then I remember. And I try to corse correct and I feel sad and confused in that moment.
I want to be a great Caretaker who helps my LO in all the ways he deserves. I just do. But I am finding that it is a full-time job and I do not have full-time hours available. And that is a terrible feeling. So I am attempting to gather a group of trusted resources to help. Trusted resources is a very broad descriptor for doctors, institutions, government agencies, experts, organizations, friends, support groups, hired assistance, family, books, websites, community support, lawyers, financial advisors, other Caregivers, etc. And help is also a broad descriptor for all the things the entities on the trusted resource list would do.
And every person who knows about this disease reminds me to be my own Caretaker. It is important they say. I say I know.
I love my LO. And this is hard.
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| Recommended by a trusted friend so I downloaded to my iPhone and read half this week ... not easy reading. |
