Sunday, February 07, 2010

Not My World

In the midst of touring the White House, surviving the blizzard of 2010, obtaining a library card for the Library of Congress, being pelted by a multitude of snowballs, and enjoying time with family, Steven had a clinic visit at the National Institutes of Health as part of the protocol studying the natural history of CNS hemangioblastomas.

After a brief debate in the waiting room, mostly with myself, about the benefits of having a second set of ears for information during a doctors visit that involves the words "neurosurgery" and "brain tumors", I decided to go in the exam room with my sweet son.

I also promised that I wouldn't ask a single question.

The doctor, the endearing and energetic Dr. W., basically relayed the same news that Stevens' local neurosurgeon, Dr. V, told him in December. All tumors are stable since last August, and slow and plodding growth is noted in several cerebellum tumors and the brain stem tumor in the past several years.

And I stayed true to my promise of being quiet during this exam. It really was quite easy, as my son is becoming very adept at handling questions posed to him and asking for the pertinent information that he needs to satisfy his mama and better take care of this disease.

And I'm learning to give him the space he needs.

I realize that this is his body. This is his disease. This is his place to ask the important questions.

And he's living with this disease in an amazing way.

This is Steven's world.

I'm happy to be part of his world,


this is not my world.

1 comment:

j said...

good for you. i am sure that your silence makes him feel more competent and capable to take care of himself and you.


Related Posts with Thumbnails