The 100th Post, a Book Announcement

This is the 100th post at Star in Her Eye, so WordPress tells me.

Five years ago when I started this blog, it wasn’t with some grand plan in mind. It wasn’t to do what the publishing industry folks call, “Building a Platform.”

It was out of desperation. I was desperate to connect with other parents like me. Fiona—my first child, my initiation into this all-consuming world of parenting—was unlike any other kid it seemed, and the things my husband and I were grappling with weren’t the things other parents at playgroups talked about.

We were learning emergency seizure care and the best songs to sing when our baby screamed during a catheterization. We were working around the clock to get our tiny baby to take enough calories by mouth to sustain herself. Other parents say of their kid, when she walks, and we had to replace the word when with if. We had to swallow frightening statistics about how many kids with her syndrome live past the age of two (2 out of 3, we read). You know, not exactly the concerns of sleep-training and fussy teething.

When it came to parenting, I felt like I lived on my own island. After the first year, I was desperate to shout from that island, to write giant letters in the sand and call out, “Anyone else? Anyone out there?”

I knew if I wrote little essays about the experience and published in the places I usually published—print literary journals—I’d never find my people. I’d never find the harried mom who blended her kid’s food every day and fed the pureed substance through a g-tube. I’d never find the dad who spent over a year supporting his baby’s head when he held her because neck control was coming far later than the developmental charts predicted, and might not come at all.

I wanted to find the parents who were living inside some deeply trying years and were still finding—at the very bases of their souls—that immeasurable ocean of a thing parents feel: Love. Totally disarming, ego-surrendering love.

I also wanted to joke about hospital-grade breast pumps.

And I wanted to vent about the stupid shit strangers sometimes said.

And I wanted to capture my ongoing realizations about the asshat I was and the mom I was becoming.

I wrote, and I wrote for free, and I hit “publish” on my posts, and people wrote back, and it was some of the most gratifying writing I’ve ever done. I heard from parents, yes, but I also heard from grown adults with disabilities, doctors, geneticists, disability advocates, med school professors who trained future doctors, yoga teachers, grandparents.

Flash forward to November, 2015. A writing friend and former professor wrote me a note: “Heather, shouldn’t these so-called ‘blog-posts’ of yours—these beautiful essays about Fiona—be a book? Is that a stupid question? Have you tried to shop a book around? Do you WANT to be writing a book?”

I thanked my friend and told her the question was flattering, but I was working on a different book project at the time. I wrote that “the blog posts come out in moments of desperation when, for 24-48 hours, I can write about nothing else. I mean to say that while my brain is very much occupied with another book, it’s possible that I’m writing an additional book-in-essays and just don’t see it.”

I kept working on the other book, and let my friend’s comment fertilize, and kept eking out blog posts in those “moments of desperation.”

Flash forward a year and a half later, to this past spring. An agent and an editor came metaphorically knocking on my door. And they were both lovely. And urged me to take the summer to write a book proposal.

Which is why the blog went silent for a few months. I took stock of all the material I had. (For you writerly types, I dumped it all into Scrivener, a brilliant software program.) Reading through old essays and blog posts was like hanging out in our overfilled basement. A box of musings on ableism here, a tarp covering a bunch of memories there. A somewhat outdated hobby-horse of a quirky story there, which might be especially fun to ride if someone tightened the screws. That kind of thing. The pieces didn’t fall effortlessly into a coherent order. The essays wouldn’t make, as a friend had suggested, a “book-in-essays.” Instead, they were written from very different stages over the past six years: the scared newbie mother still finding her bearings, the experienced mother critiquing culture. That kind of thing. They couldn’t be assembled, voila, into a book so easily, but they were fodder for a potential memoir.


So I spent the summer writing a proposal for that memoir. I created a chapter outline and wrote the first several chapters. And the blog went silent while I worked. Eventually the lovely agent submitted the proposal to the interested editor. And the editor said yes.

Longish story short, I now have a book forthcoming with Penguin Press. The working title is Raising a Rare Girl.

But it all began with this blog, and with you, and with my desire to reach you—whoever and wherever you are—and with your willingness to read. The readers of this blog are some of the kindest people I’ve seen commenting on the Internet! You are gracious and thoughtful and kind.

And I just want to say thank you—for reading my words, and for commenting and sharing your own stories when you had time, and for waving back from your own small island to say, “Hey there!”

33 thoughts on “The 100th Post, a Book Announcement

  1. Hi, Heather,

    I always expected this to happen from this gorgeous blog. I am so thrilled for you and can’t wait to read it.



    PS: was the mentor/friend Lee???

    Dawn Denham (formerly Haines)

    Teacher and Writer

    Oxford High School

    101 Charger Loop

    Oxford, MS 38655

    Cell: 603-312-0365

    OHS email:


  2. It’s so weird. I was lying in bed in that sleepy, not-quite-awake moment, and wondered to myself why there hadn’t been any posts in a while. I haven’t even thought about them for a long time. I couldn’t remember the name of your blog, so imagined searching the internet for “Fiona” and “Heather” and ““Wolf-Hirschhorn Syndrome.” Then after I got up and took my daughter to school I opened my email and you had posted this. You’re in the ether, apparently…

  3. When I think of excitement, Fi’s first ride in a school bus(to the pumpkin patch) comes to mind. Your book news may not be quite that thrilling, but it’s still really great news. Congratulations!

  4. Such wonderful news! So glad you will be sharing your words this way. I can relate to many of your stories about your little girl, and even though we feel so alone at times, we’re not. You will reach many more through your book. I can’t wait to read it. Many congratulations!

  5. Heather, I’ve been reading your blog since…forever. I have no connection to any experience or community that would make me a logical reader of Fiona’s story — and yours — except the connection to Fiona herself, which you created with your words. Since I’ve never been able to figure out how be notified when a new blog post comes up, I check the blog site every day, just through long established habit. I had begun to think perhaps you had stopped blogging, and I was sad. But it did occur to me that a book might be the reason. And I am deliriously happy to discover that it is! Thank you for all the ways you’ve stretched my mind and understanding. Thank you for the new worlds you’ve introduced me to. But thank you most especially for your rare girl, whom I hope to meet one day. Meanwhile, every good wish for the book’s success and every blessing on you and your family. — Suzanne Wilsey

  6. I’m so happy to hear about you publishing a book (first of many, I hope). Your words capture so many of my memories of experiences we’ve had with our own daughter, Alyssa, now 27. I will tell you that deep “immeasurable ocean” does exist.

  7. I’m so happy to hear about you publishing a book (first of many, I hope). I will tell you that deep “immeasurable ocean” does exist.
    Mom to Alyssa, 27

  8. This makes me so happy Heather! So happy that such amazing things can come from even our most desperate moments and musings. I can’t wait to read the book! And I feel honored that I have the privilege of knowing you and Fiona and the rest of your family. ❤ You guys are amazing every day and continue to do amazing things!!!

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