When our daughter Brenna was born, the first thing I noticed was the thick whiteness that covered her body and her bright red eyes. Brenna was born with Harlequin Ichthyosis, a very rare and severe genetic skin condition. Physically, Brenna is much different that we expected, with a thickened reddish-colored skin that constantly flakes off and doesn't allow her to sweat. But we are discovering day by day, week by week, just how beautiful different can be.

More thoughts on swim lessons...

After my post on Friday got so much reaction, I wanted to clarify at least one thing - I hope that it didn't come across that every family in the pool area at Connor's swim lessons is rude and judgmental because I absolutely don't think that is the case at all and I didn't mean to make it sound like that if I did.I know people are curious. And when people are curious, they watch and listen and want to see more. And so they stare.And sometimes Brenna gets more stares than other times - for instance, when she has more skin exposed - and sometimes I'm just more aware of the stares than other times.A couple of the families shared some beautiful comments on our Facebook page about how much they love seeing Brenna wander around the pool, and thanked us for letting their own children see the beauty in difference firsthand ....more

The Earlier, The Better: Teaching Self-Care

A while ago, I began emailing with a mother who had adopted a daughter with a different kind of ichthyosis many years ago. Her daughter is now grown, and she and I shared emails for a while about all kinds of different topics.One of the things she said has really stuck with me as I care for Brenna's skin each day: she told me to involve Brenna in her own skin care and health care as early as possible.She said that her own daughter began "helping" with her Aquaphor applications at the age of 2 or 3, and just a few years later, could rattle off to the dermatologist all updates about her skin and describe any symptoms she was experiencing. This, she told me, really encouraged her independence and her self-awareness about how her skin felt, what care she needed for it to feel the best, etc.I loved the concept, and more and more these days, I am discovering how right she was in this thinking.Starting a few months ago, Brenna has been putting the lid on her Aquaphor jar as we near the end of her application ....more

Freezer Cooking: 3 Easy Chicken Crockpot Meals with Very Little Prep

The weather is finally giving us hints of springtime, and I'm definitely enjoying the sunshine! Recently, my family hasn't been huge fans of casseroles, and especially because winter is ending (which means many of us will be favoring our crockpots over the oven) I've been on the hunt for easy and light "summertime" freezer recipes. All of these have been hits with my family lately - my kids absolutely love chicken, and I'll make whatever Brenna wants to eat these days while we wean her from her feeding tube! ...more

Swim Lessons

Usually, I don't notice it. Or I adapt, or ignore it.But sometimes situations show up that just make me so painfully aware of our differences.For me lately, it is Connor's weekly swim lessons. The kids that walk around barefoot on the dirty tile floor, wet with pool water, with little fear of germs or infection ....more


That moment when you walk into a bookstore... …and see your book on the shelf. That moment when Barnes & Noble tells you that the first order sold out in just a few days, so they placed another order for double the first amount ....more

The Big Tube Wean: Week 8

Wait, what? We've been at this for almost 2 months?! Before we began tube-weaning Brenna in February, I was skeptical about how she could possibly keep up with her nutritional demands ....more

One year in heaven

It's been one year, and Connor still mentions his name. I don't know if he really remembers much, but I like to think Connor feels his presence in his heart.They would be turning 5 together in a few months, and I often imagine, as I watch Connor grow and interact with his friends, all of the funny conversations about superheroes they would be having now.Last year, a tragic accident happened in just minutes, seconds really, and piercing grief hit our family with the loss of my cousin's precious three-year-old son, Brody.I will never forget each second of Brody's services and the raw heartbreak that engulfed everyone. But I also know that God's healing presence, his divine strength and unwavering love were present too and have covered everyone since those terrible days.Brody is terribly missed.I think of him often when I am doing something with Connor, and I always cry when I reach the part in the book The Invisible String, where the little boy asks if his string reaches up to his loved one in heaven ....more

Who You Are

I think most parents pray and worry about the challenges of peer acceptance as their children get older…those days when their friends are mean, or the names they might be called, or if they don't that invitation in the mail to the birthday party the rest of the class is talking about.And I think when your child has special needs or physical differences that immediately set them apart from other children, there is a tendency to fear and worry even more about inclusion.I used to pray about this a lot for Brenna. I would ask God to help her not be self-conscious or insecure about her appearance as she grew older. I would pray that she wouldn't ever be jealous that Connor "got normal skin" and she didn't.And then, over time, I began to realize how unrealistic this kind of request is ....more

Friday Favorites: March 28

A round-up of some of my favorite moments, reads and other exciting things this week…1. Today is the LAST day to grab my best-selling ebook, The Spaghetti Shots, for just $1.99! Tonight at midnight, the price will go back up to $4.99 ....more

Getting to enjoy the Great Outdoors with Step2

Remember how I got chosen last year, after applying on a whim, to be a Step2 Blogger? Well, I loved it so much that I applied to be a part of their new Ambassador program for 2014. They had pared the program down to just 10, so I honestly thought my chances of being selected again were super slim… and then I got the exciting email that I was a 2014 Step2 Ambassador! ...more