Sister and Daughter

October 29, 2019

This post should be an easy one to write. Nothing simpler than to write about Amanda helping her brother to learn new things, participate in different events, and expand his life almost every day. Had  Amanda not been my daughter, I could write this quickly . But Amanda is my daughter and her life is valuable in its own right. Not just as the life of a good sister and a care provider to her brother.  I am afraid that by putting too much emphasis on the part of her life which relates to her brother I would make an impression of ignoring Amanda’s own interests, perspectives, and aspirations.

As the conflicting emotions tie my thoughts into a knot, I will start with recording Amanda’s simple acts of care, love, and understanding.

1. Teaching Robert and me to play UNO.

2. Taking Robert to movies. Twice.

3.Assisting Robert and dad on a bike ride at shining Sea Sea Bike Trail in Falmouth

4. Teaching Robert to use watercolor to paint the picture.

5.Taking Robert twice to Boston by train and traveling there using subways.

6. Taking Robert to Boston by train the third time to demonstrate to me how doable that is.

7. Taking Robert for a walk along the ocean in Bar Harbor.

8. Teaching Robert to use bathrobe.

9. Never ending trips to Blue Hill, Stony Brook, and Moose Hill parks

In one way or another Amanda expanded Robert’s world beyond what we, the parents, thought was doable. That was the case with trips by train and subway to Boston.  She took over when we couldn’t keep up with Robert on a bike trail.  She noticed and addressed those Robert’s behaviors that were a problem already but which could be a bigger problem in the future. He insisted successfully on Robert wearing a robe wherever he was leaving bathroom after a shower or bath. She showed him what it is to be his friend by going to movies, parks, and MacDonald’s and just spending time together with board games or art projects.  She took from us the pressure of worrying about Robert.  The pressure we feel without even realizing it. She let us relax for a couple hours.  Most importantly, Amanda proved to us that Robert has ability to accept changes to his routines and is willing to expand his life beyond the walls, we build around him without even realizing that.

There is no hiding that Amanda became a very positive force in her brother life.  Despite dealing with her own problems and pursuing, not without setbacks, her own goals, she managed to improve Robert’s life during those two months.  She also managed to teach us something about Robert and about us. Yes, we do worry that Robert’s issues might affect Amanda.  But in the past we believed that this impact would be always negative..  Now we see it as a mixed blessing. And for now, lets leave it at that..

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