I love cilantro. Love it. Its presence defines a good salsa, guacamole or curry - it makes most anything taste better to me.
Apparently, enjoying the taste of cilantro may be genetic. And to those who may not hold the genetic propensity to like the taste, it is a vile, soapy flavor.
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I got a call from our geneticist last week. After four months at the lab, a mutation in Vivian's CHD7 gene was found. This new piece of information doesn't change Viv's prognosis, but it's part of the big picture, I guess. Hearing the result wasn't surprising, but it affected me. My mind (as it is wont to do) has been all over the place, navigating thoughts and doing lots of remembering.
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8.16.07 - One week old - NICU
On that birthday morning, the geneticist was on her way over from Stanford and my stomach was in knots. We had gotten the news that the FISH test they'd done for DiGeorge Syndrome was negative, but genetics still wanted to see Vivian in person. One NICU doctor had said this was standard procedure when a child has a heart defect - to run some genetic tests to see if there might be a larger diagnosis. A different doctor mentioned a little too casually that "Yeah, well, her ears look a little low and..." - making it clear there were physical indications beyond Vivian's heart defect that warranted getting genetics involved.
My mind can travel back to that morning so easily: the geneticist walked over and looked at my Vivian with kind but scientific eyes as I willed myself to hold it together. The NICU hummed quietly with typical early morning activity as the doctor touched Vivian's ears, investigating front and back; she gently pulled back her eyelids, inspected the palm of Viv's little hand, her tiny feet and tinier toes. She quietly asked the nurse if they had done this test or that ultrasound or this one. She asked Vince and me questions about our family history - strange and mundane questions. Hot quiet tears fell down my face. I couldn't keep them behind my eyes no matter how hard I tried. To have someone scrutinizing the baby I held in my arms, looking for something to be wrong with her, was gut-wrenching for me.
The geneticist gave us her card and told us to make an appointment in 4-6 months, just to follow up. But as it was, on my daughter's one week birthday, there was no clear clinical diagnosis beyond her heart defect.
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Soon enough we started noticing and collecting the individual diagnoses that became a clinical CHARGE diagnosis. Now, almost two years later, we have scientific evidence that it's a genetic diagnosis.
My mind is not scientific, so I process this information almost exclusively with my heart. And my heart knows that Vivian is just as she is meant to be. That the mutation of this gene on that chromosome doesn't define who she is. It most certainly is part of who she is - a part that brings a slew of challenges. But those challenges, in turn, bring such a multitude of blessings and celebrations.
I'm still processing. There's a certain peace that hearing this information has brought me, but I'm still thinking about why and how, and all the remembering has been taxing.
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And if you happen to have whatever genetic detail that makes you love cilantro like I do, this is one of our favorite recipes:
Grilled Chicken Breast with Goat Cheese and Smoked Chile Cilantro Sauce
The chicken's great, but it's the sauce that is the real winner. I could drink it with a spoon. And it tastes good on everything: veggies, burgers, rice, beans...
17 comments:
We moms have a hard time listening to someone judge our baby while at the playground...listening to someone tell us that they will have limitations for the rest of their lives is torturous. I still have not made "peace" with my Katie's prognosis. It just goes against all of my mothering instincts and feels somehow like giving up.
Beautiful post, Hannah.
I think your Vivian is beautiful and so are you!
Sara and Maddie's Aunt Karen
I definitely don't have the gene that loves cilantro:), but I know that I DO have the gene that loves Vivian. With every passing week, every new moment we get to share, I love that sweet, adorable, hard working, funny little girl more and more. As you of course know, she is fantastic just as she is!
I love you, this post, our sweet Viv! XOXOXOXO
Lovely!!!
Also I should make my kids taste cilantro because I LOVE IT!! We can not get enough of it and the store is always running out when we REALLY need it!! LOL!
Oh Hannah, I write this through tears. First because I wish we lived closer so I could give you a great big hug over coffee and ice cream. Second because your words could be my very own.
It IS so hard to have a final diagnosis. It IS hard to see that on paper. It IS hard to have someone look for something wrong with your child.
What IS NOT hard is loving Vivian for who she is. We all love her and we love you too.
Vivian is not CHARGE and CHARGE is not Vivian. You are so right that it doesn't define her. Vivian is Vivian--beautiful and precious.
I know you know that and I know it doesn't always make it easy. I just hope you know that you have a lot of us in your corner supporting you.
And I love cilantro too. :)
as usual, i read your blog and i think, "yes" with tears in my eyes or a smile on my face. it's so hard how these different nuggets of medical documentation pop up and shake you. you are an amazing mom- i learn from "watching" you on your blog, from the brief interactions we've had in person...you love viv so well. she is brimming with life and joy and personality and curiousity and spunk. part of that is just her, but so much of it is that you foster this world for her that is full of joy and delight and laughter, even with lame appointments and hard therapy sessions and a journey that looks different than you thought it would. none of this takes away from the poignancy of this post- i've now read it three times and it's made me cry each time. i think it is so important to sit in whatever space you find yourself. your words resonate and are so powerful. in short, i think you are incredible. i adore vivian. and i think cilantro is super delish.
Oh, dear friend...
I read this earlier today and had to let it sit with me for a bit. As usual, your words are some of my most favorite, regardless of how hard they are to read and feel sometimes... they are real, they are your heart (and often so close to mine) and they are beautifully written.
Like you, certain things take my mind directly to the NICU and the PICU - - it can be words (like today) or smells, or dates on the calendar - - and I am transported to those days that were full of so many raw emotions. I know that the clinical diagnosis for Viv took a long time... for us, it was only a couple of hours after Gracie was born. She is, as they say, "textbook" clinical CHARGE... having all of the major and most of the minor characteristics. The first full day of her life, I took nine pages of handwritten notes (sitting in my bed at one hospital on the phone with various specialists who were gently trying to describe all of the "anomalies" of my baby girl) while she was in a NICU 20 miles away with John by her side.
She was in the PICU fighting for her life when the CHD7 mutation findings were published. At that point, there weren't any new studies being done and because the genetic diagnosis wouldn't rule out her clinical (nor change her treatment plan) insurance won't pay for testing. Thus, unless we pay for it ourselves, we will likely never receive a genetic diagnosis. Though it won't change anything about Gracie, her prognisis, her current treatment plan, etc., part of me really wants to know whether that mutation is there... part of me is irritated that none of the studies want her "data." Considering she is so "textbook," it would only make sense in my scientific mind that they would want to compare her CHD7 to a "questionable clinical" child's CHD7... but, I guess that's why I am not the scientist.
It's so true that CHARGE does not define Viv (or Gracie). But it is, of course, a part of them... part of what makes them "them." Some people hesitate to discuss diagnosis - - as though that defines potential - - I don't feel that way at all... especially in when it comes to the vast variances in CHARGE - - but I feel that in learning about our children and navigating the best ways to help them reach their potential, we'd be remiss not to acknowledge the presence of the diagnosis... whether clinical or genetic.
I digress... and this was supposed to be a "comment" not a post!
As for the cilantro... right there with you! LOVE it... and I mean LOVE! My hubby, on the otherhand, has the "vile, soapy" cilantro gene!
i am so glad i know you!
What a beautiful post. Hannah, you and Miss Vivian are an awsome team. She is an amazing little girl- she brings so much happiness to those around her! (as do you!) I enjoy reading your honest reflections and watching you raise such a precious little girl! Thank you!
Hannah,after knowing you all of (my) life... I feel you have grown So much in strength and faith. Life's challenges are indeed OPPORTUNITIES for growth, and proving to ourselves what we can handle and conquer! I believe Vivian Madsen is an angel that our Grandma Vivian sent to radiate light into all of our lives. I love you both dearly!
Oh yes, and I do NOT have the cilantro gene (so funny!) it tastes wretched; like soap to me. I am always hesitant to put it into recipes! What was that other gene you told us about? smelling your pee after eating asparagus?! LOL..where do you pick this stuff up?!
Beautiful. I remember receiving our own "official" documentation from the lab. Even when you already know and have accepted the truth, there is a harsh reality that comes from the stark facts.
I remember wondering how could I feel and love so much, when as everyone medically related would point out there was something so wrong.
Memories are a funny thing, but mine has softened in such a short time. There are times when it is too difficult to relive those moments, but they are rapidly displaced by the collective moments of our days - today. And I wouldn't trade any of them - the good, bad, difficult or happiness for anything.
Oh yes - we all love cilantro around here too. Thanks for the great tip!
Hugs - Libby
love your post.we haven't sequenced Jubilee's chd7 yet and still debating about it. btw, i saw how cute Vivian was in her car and had to get one on Craigslist for Jubilee too! :)
as you read on the charge list many would share kristis view bout the gene tests many say the same things and its ture but its allway helpful soemtimes i am the same as gracie was i was born beflr the testing so they never have and never will test me and coz we al know and have known for the last 19 well thats how old i was when they found the gene well we all knew i had charge that long so we really dont need to confirm but what you write is so ture love ya
i don't know if every mom has something similar they have to go through, but i know that for brandon's hypothyroidism i have a very similar feeling. unfortunately, we might never get any more info about how or why. it makes me stronger to hear your optimistic take on things. you have such a way with words, and i love reading your posts!
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