Our friends Rob and Julie and their daughter Schuyler were in Chicago this week to visit a doctor specialist about Schuyler's monster, a rare disorder referred to as CBPS. We (my husband Geoff, our 10-month-old daughter Katie, and I) spent some time with them on Tuesday and Wednesday nights. I've been thinking about them since, and this is for them.
I really don't think I can express how my heart breaks for you, and how aware I am (and was, the whole time we were visiting) of how bittersweet it must be for you and Julie to hang out with our Katie, a baby who is starting to babble, learning to talk.
I know, of course, that you would never wish for anything bad to happen to Katie. But I also know how I felt when I really wished I could have a baby but couldn't yet (even though that was my own decision, unlike what you're dealing with). Even though I truly enjoyed spending time with those babies, I was still sometimes jealous, and sometimes sad.
Your situation is obviously so different from mine that it's probably wrong to even make the comparison. All I mean to say is that although I do not know how hard it must be for you both, I know that it must be very, very hard.
I want you to know that I love you, and I can't imagine how much it must hurt to get each new piece of painful information you & Julie get about Schuyler. Or actually, I guess I can imagine, but only a little bit, and that little bit of imagining makes me feel like I am living in my own nightmare, with my heart being repeatedly broken (and yet healing repeatedly, too -- ironically, by the same little person who is breaking it).
And I know this doesn't change a damn thing for you, but I want you to know, assuming that Katie turns out to be perfectly healthy (as she certainly seems to be, and as of course I fervently hope she is), that I do not take that for granted. I actually think that this is one of my strengths (and probably one of my weaknesses, too) -– that I rarely take the joys of my life for granted. But in this case, even if I weren't that way already, I would never take Katie for granted, because I know Schuyler.
For the record, Schuyler is a lovely, amazingly sweet, and affectionate little girl (you know all this). I am so glad I got to see her this week.
Lots of love to you and your family. Please, please let me know if there is ever anything I can do.