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.

What I’m Into (April 2017)

With this absolutely perfect weather we’ve been experiencing in the Midwest, we have been outside every spare second – bike rides, swings, chalk masterpieces and walks.

We made it through spring break (enjoyed the lazy mornings and lots of togetherness…but oh, the togetherness) and joyfully celebrated Easter. There’s only a month left of school, and Connor’s first grade class has begun their ABC countdown for the last 26 days, landing on C for Crazy Sock Day today! In a couple of weeks, we have a big meeting with Brenna’s IEP team to discuss the transition to…KINDERGARTEN. She couldn’t be more thrilled and continues to ask nearly every day how far away August is!

Today, I’m rounding up what I’ve been into this month – what I’m reading, links I love and favorite family moments…

(that time I sat outside with both kids reading and it was the best thing ever.)

One of my favorite recent reads is The Same Sky by Amanda Ward. It’s fiction with a dual storyline that intersects at the end, and I couldn’t put it down! I finished two wonderful pieces of children’s literature as well: Fish in a Tree and The War That Saved My Life. Highly recommend both of them. And this week, I just finished reading A Mother’s Reckoning by Sue Klebold, mother of one of the shooters in the Columbine High School massacre. It was raw, vulnerable and quite eye-opening.. and it has certainly impacted the way I think about parental vigilance as my kids get older.

Currently, I’m in the middle of A Man Called Ove and loving it. I’m striking a nice balance these days of finding really good fiction to read alongside my usually preferred nonfiction.

Connor finished up all of the books in the 13-Story Tree House series (26-Story, etc.) and is back at the Magic Tree House and Came Jansen series that he’s been drawn to this year. I’m planning to dive into the Boxcar Children series with him this summer and am so excited about it. We’ve read the first one already, and he loved it. I picked up a sweet new children’s at the library, Not Quite Black and White, which Brenna has been reading on repeat!

 This post from my friend Mary DeMuth is a powerful reminder: “We’ve preferred the opinions of the masses to the still, quiet voice of the Holy One. We’ve chased popular opinion instead of following the narrow path.”

My friend Mike Berry of Confessions of an Adoptive Parent recently opened the Oasis Community, which is an online site providing in-depth resources, face-to-face support, and mentoring for foster, adoptive, and special needs parents. I’m thrilled to be part of the community, which so far has been extremely welcoming and helpful. You can check out oasiscommunity.me to learn more and enroll.

Such a fun morning walking in a 5K to benefit our local children’s hospital NICU, which is in the middle of a huge renovation!

We loved getting the chance to make dinner at our local Ronald McDonald House with both sets of our parents, and two cute little sous chefs!

Snuggling with a pack of adorable puppies while on spring break…

Connor’s been asking for backyard monkey bars for nearly a year now, so he and Daddy (with lots of help from Grandpa too!) constructed a set of bars in our yard on one beautiful weekend day…

I’m pretty sure she wants to bake with me so that she can sneak the chocolate chips…

Wishing you beautifully bright and colorful days ahead!

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.