I’ve been reading with interest the NYTime’s series on disability. Today’s article is A Disabled Life is a Life Worth Living. It was written by a man who has spinal muscular atrophy. Though I’m not the one in the family with the disability and I doubt that Edda will ever graduate from Harvard like the author of the article, nonetheless, there were some sentences that I felt held truth for our situation:
The perseverance to live fully with a profound disability comes, I think, in part from honestly facing your own powerlessness and frailty, and recognizing how much worse things have been and could still be. This can instill a delight in the now. In living with a disability, you’ve already dealt with much of what other people fear most, and if you come out on the other side you are, by definition, a survivor. The resolve required, and begrudging acceptance of what you can’t change, may bring a kind of wisdom.
Sometimes Edda will walk in our living room to a spot where I’m not expecting her to be. My back will be turned, I’ll be doing the dishes or shopping online and then I’ll turn quickly, see her in the new spot and my breath will catch. In that moment, I don’t see her limited by her disability, I can only see her in the light of youth and beauty. Oh Edda! I hope you are having fun. Love, mom.