How we’ve modified our home for our daughter’s skin disorder

When we moved into our new home in the fall of 2014, we not only stepped in ready to settle into a new community and school district, but also motivated to transform our house. We had lots of updates we wanted to make, and keeping Brenna’s physical needs in mind during the remodeling process was top priority.

Brenna is very small for her age and struggles with fine and gross motor skills, and her constant use of Aquaphor is something we keep in the back of our mind when choosing fabrics, so over the last 1.5 years, we have modified aspects of our home to make it more easily maintained and cleaned and to help tasks be easier for Brenna to do independently.

One of the first things we did when we moved in was switch out the door knobs for door handles. Knobs are still very difficult for Brenna’s small fingers, and turning a knob with Aquaphor on your hands is nearly impossible. Handles mean that she can open and close all of the doors in our house without help.

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I love how cozy carpet makes a space feel, but we also know that carpet collects skin flakes as her extra skin dries and peels off and is more difficult to clean. So we installed laminate wood in Brenna’s bedroom and our upstairs hallway.

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What was a major selling point for us as we purchased our home was that it had an extra bedroom which we could remodel into an upstairs laundry room and built in a new bathroom for Brenna. Two essential features of Brenna’s bathroom remodel were a tiny toilet and a specialized MicroSilk tub.cIMG_7316

The toilet being so low to the ground means that Brenna has been able to learn how to use it all by herself, whereas she is not even close to being physically strong or tall enough to climb up on a standard sized toilet…cIMG_7324

Speaking of low, we’ve tried to be intentional about keeping a lot of aspects of our home low to accommodate Brenna’s small size and also foster independence. We keep her small articles of clothing like socks and hats and washcloths in lower drawers and baskets, and she helps me put away her laundry easily.

The kids’ plates, bowls and cups are stored in low cupboards with pull-out drawers that both kids can easily access to help prepare their meals and to help put away clean dishes. One of Brenna’s household “jobs” is to set the kitchen table with napkins before dinnertime, so keeping the napkins in a lower cupboard means that she can complete this without assistance.

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And when Evan went to work creating a mudroom space for our home, we put a section of low hooks so that the kids can hang up their coats and backpacks, and a basket where they can toss their shoes. So many mudroom ideas online feature hooks above a bench, but I knew that would be out of reach for Brenna for a long time – not to mention that the harder something is to do, the less likely the kids will be to actually do it. A hook and a basket is so easy for them and keeps things tidier.

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As for furniture, we outfitted our playroom and our living room with leather. Brenna can climb and roll around on this furniture, and it’s no worse for wear. Easy to clean and easy to maintain, despite constant Aquaphor! And during the summer, after a few throw pillows that have succumbed to the stains of Aquaphor, I snagged some outdoor throw pillows for our living room… the fabric is more low-maintenance!

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Our home is two stories, plus a basement, and we did worry about how difficult stairs might be, but Brenna does really well on them. We do carry her a lot, but she is able to scoot up and down by herself with no problem.

Since laundry is such a big part of our day-to-day now, we outfitted our laundry room with two washers, so we can have one specifically designated for Brenna’s clothes. Laundry is a little more consuming when you factor in clothing saturated with Aquaphor – cleaning both the clothes and the machines/sink – so having a big sink to pre-soak and a separate machine really helps.

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As for the outdoors, the big issue we had when we moved in was a large, old wooden swing set. The wood worried me for cuts and splinters for both kids, but especially Brenna since her skin is much more sensitive. And with its steep step ladder, the slide and “tree house” wasn’t even accessible to Brenna without me carrying her up.

So we switched out the swing set for the Step2 Naturally Playful Adventure Lodge Play Center with Glider. Here’s another reason we love Step2 – their swing sets are plastic! And the “ladder” on the back of it is more like stairs, with handles to grab onto at the top, so Brenna can climb up all by herself.cIMG_3705

 

With these kinds of changes, both big and small, it has empowered Brenna to take responsibility within our household just like every other member of the family. She is expected to do chores just as Connor is, and because of things like low mudroom hooks and door handles instead of knobs, she can do many things around our home without assistance, which only serves to foster more independence and pride at what she is accomplishing!

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Introducing my new blog design and name

In the past couple of weeks, I have been working behind the scenes to launch a new design for this space, with new pages, a new layout, and even a new URL. If you typed in Blessedbybrenna.com to visit, you’ll notice that it has been re-directed.

All of this newness has been in the works for a while, and there are a lot of reasons I made this switch.

I have never wanted to be Brenna’s voice. When I am needed, I will be her advocate, her protector, her greatest supporter… but never her voice. I am my own voice, however, and in sharing my unique experiences as her mom, I have found such strength, such healing, and such connection – with my children, my family, my friends, and fellow parents all over the world.

I began this blog when Brenna was just four days old to update family and friends about her critical condition. I kept writing because it was, for me, a very healing way to process this new journey and because I wanted to share so that others around the world could be aware of Brenna’s very rare condition.

It seems surreal that it has been more than four years since I pressed publish on my first blog post, sharing about a condition that we had never heard of and could barely pronounce but that changed our lives forever, in all kinds of ways. I have written about many, many things in those four years, but my core message has and will always be the same: discovering and celebrating all kinds of beautiful in our lives, in the different and the unexpected.courtney westlake

We will forever be Blessed by Brenna. And yet, Evan and I are also incredibly blessed by Connor, by each other, by our wonderful family and friends and community and readers. As we move into this new year, I wanted to create a space that better reflects our whole story now, instead of just part of that. The new URL encompasses that (well, in truth, I debated several new names but all of those URLs were taken, so I just decided to keep it simple with my own name!), and the new design better enables me to share all of the different aspects of our journey and our story, particularly when my book A Different Beautiful is released in August. I’d love for you to take some time to click around to some of the new and updated pages in the menu.

I also want to invite you as readers into these exciting changes. Last weekend, we saw a man at Menard’s and he told us how much his wife loved this blog – and he took a photo of us to show her as he said she would be excited that he saw us in person. It was very sweet, and it made me realize how many people read these words that I’ve never met, from all across the world.

Since you all know so much about us, I would love to ask you to take a couple of minutes to share about YOU! :) I created a little survey, mostly out of curiosity, to find out who is on the other side of the screen and give you an opportunity to share with me why you read and what your favorite – and not favorite – posts are. Thanks so much for taking the time to fill this out (it’s only 10 short questions!) and most of all, for coming along on this crazy ride with us for the last four years. It’s certainly not over, and I think the best is yet to come. I’m so glad to have you here with our family!

You can click here to take the survey or use the form below…
Create your own user feedback survey

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