30 May 2013

Ichthyosis Awareness Month: Brenna and Courtney's story ~ "Life doesn't have to be perfect to be wonderful."

I've followed Brenna's story since she was born in December 2011. I remember writing to her parents, via their blog, that things will be ok. Life for Brenna and her family will be their own kind of normal, and while Brenna's Ichthyosis may stop her from doing certain things, I know she will have a great life. She's got a loving family and so many supporters around the world cheering for her. She's making people think differently about visible difference already, at 17 months old.

Brenna's progress has been amazing - her smile makes the world a brighter place. Brenna's Mum, Courtney, writes about feeling empowered by her daughter. You can read Courtney's blog here.

"It happened without me even realizing it. Something that I wished for, hoped for, cried over since the day our daughter Brenna was born in December 2011.

It was a relaxing winter afternoon as I sat with Brenna and her three-year-old brother Connor in our living room, playing with toys and pulling out books to read, and it dawned on me: our lives were finally “normal.”

Fifteen months after Brenna was born with Harlequin Ichthyosis, her severe skin condition had finally become normal to me. Multiple coats of Aquaphor each day, bleach baths, nutritional concerns/working her feeding pump, her tiny stature with shortened fingers that don’t extend completely open, and tough, reddish, flaky skin…in my eyes, there was nothing unusual about any of this.

When my husband Evan and I found out that we were expecting a little girl, we envisioned what we then considered the perfect family: one boy, one girl…two little blond-headed kids running around, playing sports and exceling in the classroom. Evan was in a thriving banking career, and I was running a successful photography studio with big dreams. We might as well have thrown a perfectly manicured lawn and white picket fence in there.

With Brenna’s birth, our white picket fence was destroyed. We were devastated to see our daughter in obvious pain, with thick plaques of skin tightly covering her body and deep, angry fissures in between. We wondered what kind of life she would have, if she even lived at all. And we wondered and worried what our lives would be like too.

Brenna’s first year of life was hard. She battled several skin infections and endured four hospitalizations due to dehydration and staph. We had to make the very difficult decision to have a g-tube placed in her stomach when she couldn’t keep up nutritionally with the calories that her body demands as it over-produces skin, and there have been many more downs than ups when it comes to her diet and consumption. And of course, the general skin care is constant and can be overwhelming at times.

And while Brenna’s healthcare has been difficult, coping with my feelings has been a struggle too. From the beginning, I have loved and accepted Brenna completely as she is, and that will never change. But there is a lot of loss that comes with such a drastic, life-altering event as having a child with a severe health condition. Loss of the things we won’t get to do as a family that I had always dreamed we would. Loss of the things that Brenna won’t get to do or be that I had hoped she would. And, at least right now, the loss of some personal and professional goals and dreams that I had before she arrived into our lives.

But in this journey so far, I’ve learned something: life doesn’t have to be perfect to be wonderful.

Sure, not many people would be envious of the Aquaphor stains all over our living room pillows or the fact that we’re on a first-name basis with Brenna’s feeding pump (George, by the way.) But our children are happy. They are safe. And there is more pure, unconditional love in our house than they can even begin to understand. Who needs a white picket fence when you have all that?

Somewhere along the line, early on, I began to feel empowered and inspired by Brenna. She has helped me to realize so much about myself, about acceptance and respect, and about outward appearances. I firmly believe that ignorance is not, in fact, bliss…and that to eliminate ignorance will aid in eliminating criticism and cruelty toward those who are different. So my new mission that began unknowingly the day Brenna was born is to educate and raise awareness, so that Brenna and all people like her, who look different, act different or feel different, are accepted for who they are. I have found myself an advocate – an advocate for Brenna’s health care every day, but also an advocate for appreciation of differences in us all.

There is no real “normal”…there is only normal as we perceive it. And I hope that more and more people will perceive “different” as “normal” in their lives, just as I do in my life now, thanks to my beautiful Brenna."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

4 comments:

  1. She is so beautiful it's unbelievable. She is going to make such a difference in the world :)

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  2. Awww she's so squishy! And doing so much better than she was a birth. Well done Courtney and Evan.

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  3. Hi, Courtney and Brenna, I've been following your story since December, 2011, ever since Carly put up the link. I remember the first time you got to hold Brenna, the day she came home from the hospital, and every medical crisis since. (The tummy troubles last summer? Heart-breaking.) Now there is a new family and infant to add to the international community that has come together around the issues of ichthyosis and visible differences, and I'm so thrilled to be watching Stephanie's family thrive as once-vulnerable lives start to blossom.

    Sending love to Evan and Connor too!

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  4. What a powerful story, so moving.
    "Life doesn't have to be perfect to be wonderful"- one of the best quotes I've ever heard.
    Really enjoying your posts this month Carly.

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