Because I know Schuyler

By Jessamyn

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.

Dear Rob,

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.

Comments

[Bonnie]

I just want to say that this sounds so familar to me and brings many tears to my eyes. My son has been diagnosed with the same thing. Until now I have felt like the only parent alive going through this.

[Meg]

Jessie, you are a lovely writer! I can't tell you how many times you've made me teary eyed by writing such moving, and heartfelt stories/essays/letters online. You write from the heart and it's clear how much you love your friends and family. I enjoy everything you write. Just wanted you to know.

[Jill]

I have been following this too, and I type this with tears in my eyes. Rob, you are blessed with a wonderful daughter (no news to you) and good friends. I hope this works as well as it can for you. You and your wife are really great parents, and Jessamyn, thanks for capturing this time. It's times like these, I tell you. Good luck Rob and thanks Jessamyn.

[Rob Rummel-Hudson]

Thank you, so so much. It was an awful day for us, but it would have been an unbearable week without all of you guys. And your daughter is wonderful, she made me goofy happy while we were there. Bittersweet, perhaps, but mostly sweet.