As one may imagine, we've had a range of responses to E's Down Syndrome. Heck, T & I have have range of responses. As mentioned in our Family FAQ (see sidebar), the hardest part of telling people is that we never know what type of response we'll receive. By far and large, responses have been amazingly supportive, encouraging, and reassuring. Occasionally, though, we've encountered responses that we hope come from a lack of understanding or knowledge. As neither of our families have ever had a family member (to our knowledge) with DS or other birth defect, there hasn't been an opportunity to know the full range of abilities that these kids have.
The responses that are the hardest, are those when the respondent hopes for a miracle or for prayers that the DS will not be part of our lives. My visceral, mama bear response is indignation to the perceived insensitivity that chromosomal abnormalities are fixable. It's also the equivalent of the "I-can-say-what-I-want-about-my-family-member-but-woe-to outsiders-who-attack-them" response. Appreciating the prayers of those who are praying for us to have strength and grace to meet any demands, I try for understanding and recognize that the intent is for us, their loved ones, to be spared any heartache and distress. There's also a part of that tries for understanding because the responses are not anything that I haven't thought myself. E's DS is not something that we would have picked, and in my ignorance, I intellectually know that our lives will still be rich, but there's still fear of the unknown.
I've been thinking about this conflicting or dichotomy of my responses. It struck me the other day, that perhaps when people hope for the miracle that E is "fixed," that they're missing the point. Perhaps the true miracle is that T & I will be changed because of this experience. This, I think is what the real miracle will be.