I am sitting at my desk, minding my own business and this email comes in …
I spent yesterday reading your blog. Our unborn daughter, due in February, has hydrocephalus, agenesis of the corpus callosum, microcephaly, a dilated kidney, and several other (relatively) minor issues. I needed to find someone who could be honest about what life with a severely disabled child is like. I found your blog from Claire’s (I think).
I’m 35, an assistant professor, and I used to help run our family business. I’m married with a one-year-old (seemingly normal) daughter. I have no right to ask you anything, but I’m wondering what you wish you would have known when Pearlsky was born. Is there advice beyond what I’ve read from your blog that you think might be useful?
I know you’re busy, so I understand if you can’t respond. Thank you for pegging exactly what bothers me about “Welcome to Holland”. Thank you for sharing your story–I don’t think you’ll understand what it meant to me to read it when I did.
Yes, I responded but I think you should. Feel free to write in the comments, but remember the following …
The issues with their new daughter can run the gamut, there is no way to know how severely she will be disabled, it can be from extremely mild, to, well, extremely not mild. Do not make assumptions, no one will know for a while. I assume they have the right medical support at this point, and are also bracing for the worst, which is one valid mechanism.
OK, go for it. Leave what you like in the comments.