{Celebrating Beautiful} Finding Rainbows, by Lauren Casper

In blogging for the last 5 years, I’ve written about many different topics, but one theme that has remained constant has been my focus of sharing about how our family is discovering the beauty in difference and choosing to celebrate the incredible beauty all around us, and how we want to encourage others to do the same. After connecting with and reading about so many amazing people and families doing so many amazing things, I started a guest blog series called Celebrating Beautiful, as it relates to beauty however it can be interpreted: parenthood, faith, your kids, an experience, home, and so much more.
 
I’ve loved getting to know Lauren Casper through blogging. In fact, I even quoted some of her beautiful writing in my book!  I was so honored when last year, Lauren ask me to endorse her book, It’s Okay About It, which just released last week! What a wonderful Mother’s Day gift this book would make. Lauren has a way of gently bridging and filling you up with her writing, even the parts of her story that come from places of deep hurt. I’m thrilled to host her today.
Here is Lauren Casper on Celebrating Beautiful…

My son, Mareto, loves light and color. He is especially excited by rainbows. One day, I was switching out a CD, and he noticed the way the underside caught the light and reflected a rainbow. He begged to hold it and spent the next couple of hours carrying it through the house with his little index finger poked through the center hole. He twisted and turned it at different angles, tilting his head to look at the rainbow. Mareto finds light and color in the ordinary.

Another day we were walking through the woods when Mareto stopped abruptly and looked up to exclaim, “Look! The tree rainbow!” I followed his gaze toward a tree that was bent and partially fallen. Its skinny trunk grew up out of the dirt and then arched over a pathway, where it ended by resting on a tree several feet away. It was tall, bending high above us, and creating a shape in the sky just like a rainbow. And I never would have noticed it.

But Mareto did. Mareto sees beauty in places I wouldn’t expect to find it, such as the broken trunk of a tree.

We kept walking, and not too many minutes passed before Mareto stooped to pick up a small, dirty, gray rock. He turned it over in the palm of his hand a few times before holding it up to show me. “The rock is a heart!” he exclaimed with bright, wide eyes, barely holding in his awe and excitement. Sure enough, this small rock looked as if it had been crudely cut into the shape of a heart. I wouldn’t have noticed that either.

Mareto’s eyes seem trained to find the beauty in everything. I remember a time when mine were, too, but somewhere along the way, I lost it.

I remember trotting through the woods with my sister as a child, looking for acorns to collect, then popping their tops off and pretending they were tiny bowls for tiny animals. I remember inspecting each rock, hoping to discover an old arrowhead. I remember lying in the grass to braid clover flowers together for necklaces and bracelets. I remember finding shapes in the clouds and dancing in the rain.

When did I lose my vision?

Life got hard and big and scary. The world no longer felt or looked beautiful; instead it seemed broken and messy and ugly. I stopped finding beauty in everything because I was too focused on the brokenness. Terrible things happen and we can’t always control them, so a narrative of fear writes itself in our hearts—scribbling out the story of broken beauty, but beauty nonetheless.

God tells us that when we love him, “all things work together for good” (Romans 8:28). That doesn’t mean everything that happens to us will be good; it means that God is bigger than our suffering and the world’s suffering. It means that God is actually powerful enough to make something lovely in spite of and out of the messiest and most awful parts of life.

But do we see it? Do we look for the beauty hiding around the next corner?

Do we actually see the arc of a rainbow or just the broken trunk of a tree? Do we believe the sun is beaming above the dark clouds, or do we fixate on the storm? Do we see that every single broken thing in life is really just redemption waiting to happen?

I don’t always see the beauty. I admit that it’s not always my first inclination. I spent so many years seeing the broken in the world that it takes a conscious effort to look for the good in the bad. But Mareto is helping me—taking my hand and showing me all the beautiful things in this world—and I’m watching him live it out.

Lauren Casper is the author of It’s Okay About It: Lessons from a Remarkable Five-Year-Old about Living Life Wide Open and founder of the internationally known blog laurencasper.com, where she shares her thoughts on life, parenting, and faith. She is a top contributor to the TODAY Parenting Team and has had numerous articles syndicated by The Huffington Post, the TODAY show, Yahoo! News, and several other publications. Lauren and her husband, John, have two beautiful children brought home from Ethiopia in 2011 and 2012. They make their home in the Shenandoah Valley of Virginia.

Ichthyosis Awareness Month 2017: what awareness really means

The beginning of May marks the beginning of Ichthyosis Awareness Month – and before you glass over, let me assure you I realize how uninteresting that sounds at its surface.

There are thousands of these “awareness” days, weeks and months, aren’t there? And so many of them have absolutely no personal impact on our lives.

But in actuality, what these events do is create an opportunity for us – an opportunity to reflect on our own lives, and the lives of those around us. An opportunity to think about how we can connect and reach out to others, how we can show that we care, and how we can truly love each other.

Even when we can’t fully understand what another person is experiencing, we can care. We can lean in to them during whatever journey is lying in front of them, or has happened behind them.

Instead of looking at titles, labels, appearances, headlines – very surface pieces of life – we need to try to look deeper at the stories. It is through our stories that we find meaningful relationships and true points of connection.

You may hear “Ichthyosis Awareness Month” and let that title quickly pass through your mind. But it is my hope that when you read our family stories, you realize how similar we are to your own family, how similar my feelings as a mom are to your own feelings as a parent or grandparent, despite perhaps vastly different situations.

When you read about a father’s tender acts of hair care for his daughter, it is not about “ichthyosis awareness” but rather about the kind of unconditional love that we all recognize and feel for our babies.

When you read about me wishing for other parents to build bridges instead of walls when they encounter our family at the park, it is not about “ichthyosis awareness” but rather about a mother’s hope for kindness and acceptance toward her children.

When you read about how I am learning to step back and let my daughter handle some of the public reaction to her skin, it is not about “ichthyosis awareness” but more so about a mother trying to instill confidence, self-love and an assurance in finding identity in Christ for her daughter and son.

It is my hope that we can all learn to lean into each other, to connect as we walk together during these seasons and recognize the value of each other’s stories and experiences in creating a beautiful life!

In Years Past

If you’d like to learn more, I’m rounding up some of my past Ichthyosis Awareness Month projects…

In 2013 (four years ago – wow!), I’ve shared more in depth about the genetics behind a recessive genetic disorder like H.I., and covered other issues related to this severe skin disorder, from nutritional demands to temperature concerns to susceptibility to infection.

In 2014, I did a four-part Q&A series, where I answered questions about our daily routines and daily life caring for a child with ichthyosis. I received questions from what steps we have taken to ensure Brenna stays healthy when we leave the house (since she is susceptible to bacterial skin infections), to questions if Brenna’s bath hurts her, to inquiries about Brenna’s prognosis and if she will “grow out” of her condition, to what my pregnancy with her was like.

In 2015, I showcased a “Day in Our Life” in photos, to give a glimpse into what our typical day might look like, from a long bath to therapy and other general family activities… I covered posts about our morningbath time and afternoon/evening.

As I mentioned above, I’ve always believed that sharing stories is how we can best educate other people – sharing about our experiences that others haven’t experienced themselves helps us all. I’ve been honored to host many beautiful stories of love and redemption and God’s grace, including:

When Nicole and her family chose to adopt a beautiful baby with Harlequin ichthyosis

How the only family in Ireland to have a child with Harlequin ichthyosis is thriving

When Stephanie Turner shared about becoming the first woman with HI to have children (and we continue to think of Stephanie, often very tearfully, since her unexpected death two months ago. She has forever changed our family, and I’m grateful to have her personal words to carry on her legacy and share her generous love.)

 As always, I’m so grateful that by using story, through this blogging platform, I can offer a beautiful face to a condition that you have probably never heard of and might still not even be able to pronounce, and that perhaps you might become invested in reading, despite this condition having no direct effect on your life. 

What can you do? You can educate your children. You can tell your families and your friends that there is a skin disorder called ichthyosis and it’s not a sunburn or contagious; it’s something that thousands of people live with every day. And there are many more conditions, disorders and physical/mental/emotional differences, and you can instill in the people you love that we are all made different and that should be celebrated. But it should not detract from our sameness and the respect we show each other because of our shared humanity.

Rare disease receives very little funding. So if you are so moved, we would be honored if you would consider making a donation in Brenna’s name to our foundation, Foundation for Ichthyosis and Related Skin Types (also called FIRST), with whom we work very closely.

Happy May and Happy Ichthyosis Awareness Month.

 My book, A Different Beautiful, is now available for order. Interested in reading more with your kids about differences and being yourself? You can download a guide to the best children’s books on differences and disabilities when you subscribe to my monthly email newsletter!  Follow me on  Facebook and Instagram.