Welcome! This is a blog about human being named Fiona, who has Wolf-Hirschhorn Syndrome, and my life as her mother. It was started in 2012, when Fiona turned 1, and ran steadily until Fiona was 6, at which point I signed a contract with Penguin Press to write a book. From here on out, I’ll be blogging sporadically. Here are some adorable, un-updated photos of Fiona. She’s three here:
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. 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.
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.”
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.
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).
Eddie, you’re awesome. I made pulled pork the other day, in your honor, and it came out only a quarter as good as yours, which meant it came out fairly good. Love you guys!
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.
Thanks, lady. Love you guys!
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
Just wanted to say my Jan. 2014 issue of The Sun arrived last night and yours was one of the first pieces I read. What a beautiful essay. Well done!
She’s a beauty… Tkank you for sharing your story so thoughtfully and passionately.
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.
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!
Thank you, Andrea! I hope the piece provides a rich reading experience for your class.
I too read the R-Word. I echo the replays and wish you and Fiona all that this world can offer
Thank you so much, Keith, for reading “The R-Word” and finding me here.
Is there a way to contact you? Thank you!
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.
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.
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! ❤
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.
Just found your blog and read your family’s story and am in awe. Your daughter is so beautiful, and I’m so excited to follow along. Sending lots of love ❤
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
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.
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!
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.
I cannot express with just words how very many lives you are touching with this blog and your observations on acceptance and humanity, far beyond just the families of the rare and special beings among us. I can express it with love and energy, though, so I’ll do that instead. So much love.
I am doing a research project on Wolf Hirchhorn Syndrome and this page was really helpful thank you!!!
I leafed through NJ magazine recently saw a picture of a girl that I knew I had seen before. I read the article and I recognized Fiona from The Clark Museum. We were in the section with pictures and sculptures of ballerinas. I had asked her if she liked to dance. I took 2 pictures as she moved past the sculptures. I wanted to capture the effect that art has on us. I was pleased with myself for the composition and warmed by her reaction. The pictures always make me smile. At the time I sent one to you. I remember her energy, her happiness and her multicolored clothes, all of which, I am sure, are very special to her and everyone who meets her. I was warmed again to see the picture and read your article.
Awesome! I remember that day.