I tried to keep special time with her as part of our routine. I made sure I did not ask her to help too much with her brother (I was so concerned that she would feel responsible for him). In hindsite I'm sure I asked her to help less with him than I would have if he were typical. I really went out of my way to not have Nicky become a burden to her, at least in the ways that I could see. I knew that having him in the house and his constant needs was burden enough, she should not have to help take care of him too.
She turned to me and with a maturity and understanding far beyond her years she said "Don't worry mom, I will never let that happen to Nicky".
It was in that minute that I knew for sure that Evyn understood the magnitude of her brothers illness and the reality that he would need life long care. It was also the moment that I learned that on some level, no matter what I had done to limit her burden, she knew she would be responsible for caring for him, when I can't.
Notes to myself and others
The siblings are impacted no matter what we do
The siblings often build wonderful careers as a result of having a special needs sibiling
Siblings are very special too