About

Welcome! This is a blog about a very special human being named Fiona, and my life as her mother. She is, among other things: a fan of The Sound of Music, a lover of crayons, an eater of spicy jalapeño cheese, and a listener (thanks to her dad) of Lee “Scratch” Perry and other reggae greats.

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She also has a genetic deletion. Of her twenty-three pairs of chromosomes, she’s missing the very top of one copy of number four.  This is called “Wolf-Hirschhorn Syndrome,” a name I wished from the beginning were a little easier to get out of my mouth. Even her many specialists get lost in all the H’s and R’s of the last two syllables.

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If you’d like to read the beginning of our story, go here.

If you’re wondering how this deletion came about, here’s the long story, my favorite post. The short story: it was a spontaneous occurrence when Fiona began her life as a microscopic seed of cells.

If you’re curious about the blog’s title, go here.

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It’s estimated that Wolf-Hirschhorn Syndrome, or WHS, occurs in 1 out of 50,000 births. You are 250 times more likely to have your house struck by lightning, according to the National Lightning Safety Institute. (But admittedly, the odds of your house getting struck by lightning appear far higher than I had expected!) I once read that there are only a few hundred reported cases of WHS in the country. It is, indeed, a “Rare Genetic Syndrome.”

Some would say “a rare genetic disease.” But I hesitate to call it a “disease.”  Fiona is not, at her core, in dis ease.  She is a whole being, delightful and delighted, and I am learning as I love her just how whole a human can be, with or without all her chromosomes intact.

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Who am I? I’m a writer, a teacher, and a first-time mother, and you can find out more about me at my author website, www.heatherkirnlanier.com.

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What does WHS mean for Fiona? We are still learning as we go. Right now, it means she is developmentally delayed, and has many specialists and therapists that follow her as she grows. It also means, at least for me, that my eyes are widening and my heart is expanding to ways of being and knowing that I had not ever considered. Please join me as Fiona continues to widen our eyes, expand our hearts, and blow our minds.

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22 thoughts on “About

  1. Eyes widened? Check.
    Heart expanded? Check.
    Mind blown? Check.

    I’m ready for whatever you’ve got for me next Fiona. (And mom, don’t forget your village extends to Potomac, MD. Anything, anytime.) Much love, Eddie (and Betsy & Ruby).

  2. Thank you for sharing your experiences, your thoughts, and your mad love for Fiona, not to mention your remarkable voice as a writer. And consider your village ever growing (but don’t forget that Souderton is in it!). All things beautiful, in that family of yours.

  3. Enjoyed your blog and it was very well articulated. I too am a mother of a thirty eight year old son and have faced this issue on numerous occasions. This is one of the things in life that causes us both pain and stress. Our children are a blessing just like all children. Maybe some day others will start to realize this

  4. A friend on The Longest Shortest Time Mamas facebook group recommended I read your article in Brain, Child magazine. I just wanted to say you expressed yourself so beautifully. I am almost 6 months in to my own journey and can relate so well to what you wrote. I have tried to be very honest in my own blog so that future parents who stumble upon it will know it was ok to not feel positive from the get go. I just wanted to say thank you for doing the same.

  5. I just found your blog after seeing your article The R-Word in The Sun Magazine. The article was beautiful, and I’d love to share it with a class I teach. I’m excited to be following your blog!

  6. I came across a reblog by Nutsrok of one of your posts (the one about Geel). What a beautiful and special young lady you have in your life 🙂 Bless you and your family. It was a delight to find you and learn a little about you all. I think I’ll hang around.

  7. So very grateful for discovering this “pearl” after hearing about you receiving the 4-ward Award at our most recent 4p- Conference in LA. Although Alyssa is now 26, your words resonate purely in my heart as if the experience & feeling were happening again for the first time. There is a commonality amongst all our kids with 4p- which is why your work is so very important. Thank you …& Congrats! I look forward to more.
    Trish Miles (Idaho)
    Please visit Alyssa’s FB page Alyssa Smiles.

  8. You. Are. Amazing. I found your blog after your post about Geel and acceptance was posted on FB by Moments a Day. That article and your About Me introduction have really spoken to my heart. I’m the mommy of a little boy who I am absolutely crazy about, but he has some “uniqueness”. It’s something that I still haven’t quite come to terms with, or figured out how to talk about or share with others – but I’m working on it. Thank you for sharing your journey in such a sweet and vulnerable way. I look forward to reading more! ❤

  9. I just found your blog through Uncommon Sense and you are an amazing writer and your baby is beautiful! Looking forward to reading through your blog.

  10. I just read your article “super babies don’t cry” and the found my way here to comment. My son has an (as yet) undiagnosed syndrome. So many parts of your essay resonated with me-especially your description of that first year. Thank you from the other side of the world x

  11. I read your Super Babies Don’t Cry essay on Vela. Wow. Just, wow. Stunning piece. It spoke so much to some of the hard lessons that I feel like I’ve been learning since becoming a parent. Especially the whole realization that “having control” is really an illusion. Thank you for sharing your experience and heart with the world. Your daughter is beautiful.

  12. Fiona is adorable! (I am a sucker for curls, and she has such a great grin!) I too am the mother of a rare girl. You can read about her at my very short blog http://www.withtheworldatherfeet.blogspot.com. I really relate to when you said it’s a wonder that so many of us are even symmetrical when you consider how many things can go wrong in the chromosomal dance that creates us. I never thought about the miracle of a body forming as expected, until my daughter’s did not. I now marvel at the architectural miracle that is the knee joint. It is an interesting journey, this parenting gig!

  13. I also read your Super Babies Don’t Cry article. It brought me to tears, and I shared the link with my Prader-Willi Syndrome community of parents as well. It’s another rare genetic condition, and I can’t tell you how deeply I related to your story. Thank you for sharing it! If you want to read more about our journey (or if it could in any way be a part of your collection of essays), please visit leaningintolove.com.

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