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Friday, April 18, 2014

Friday Favorites: April 18

Today is Good Friday, and sometimes I think it becomes almost second nature to hear the words "Jesus died for us and our sins" in an expectant and nonchalant way. But as I've been reading my Lenten book, I've been re-learning and discovering in a new way how horrible Jesus' death was - agonizing, painful. He felt helpless, abandoned and betrayed.

But the Resurrection…how glorious, how incredible. I'm so excited to celebrate Easter this year and all that it means!
Easter egg art with friends this week

And for a round-up of some of my favorite moments, reads and other exciting things this week…

1. I just started reading Malcolm Gladwell's book Outliers, and it is absolutely fascinating. It explores what makes successful and high-achieving people stand out, and I can't put it down!

2. On that note, lately I've been giving myself permission to let my mind slow down and read more. Usually after the kids' bedtime routines, I would jump back on the computer, scour blogs, scroll through Pinterest and Instagram, and try to keep up with responding to messages. My mind needed a break, and I've been pulled onto the couch with a good book in the evenings lately. And I love it!

3. I've also been picking up a book in the afternoon hours occasionally - oh, the indulgence! :) In one afternoon, I finished a newly released ebook by Anne from Modern Mrs. Darcy, called How She Does It, which I found so interesting and relevant that I am planning to re-read it. If you're a mom who earns income in some capacity, especially working from home or part-time, you will love this book (especially for just $4.99!)

4. May is Ichthyosis Awareness Month! I have some fun things planned to share about our lives with ichthyosis.

5. So I discovered a new children's author by accident. I saw a book displayed on the library shelf, so I grabbed it. Zero by Kathryn Otoshi is such a cool story about how the number zero discovers that his value is so much more than nothing. Apparently Zero is a follow-up to her award-winning book One, which I now can't wait to get my hands on.

And speaking of the library shelf….is there anything better than a rainy afternoon at the library?? I could spend all day in a library or bookstore.

At the mall last weekend, Brenna reached up to grab Evan's hand while we walked. I wish you could have seen his face :)

Of course, a "favorites" post has to include front porch giggles...

And new baby doll love

So I had just vacuumed the kitchen. And then he asked to get his play-doh out. I love saying yes…because memories are well worth the messes!

This morning, Evan had already left for work and I had just woken up when Connor appeared at my bedroom door, animals and blankets in hand. He crawled into bed and then dozed off, all snuggled up with me. I gazed at his precious little face sleeping across from me, and it was one of my absolutely favorite moments this week - and the BEST start to my Friday morning!

Have a great weekend!

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Wednesday, April 16, 2014

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. And I made the mistake of reading those comments during preschool pick-up and was a crying mess :)

Others also suggested that we take the initiative to explain Brenna's condition when we notice stares. While I don't disagree with this tactic, sometimes I just don't want to talk about it. Not out of shame or denial or anything like that - simply because I need a change in the conversation! There are so many more things to talk about regarding my kids or my life, and Brenna's skin is just one part of that.

The thing is, when you're talking with health care professionals and therapists just about every day about some skin, health or development issue…you get pretty tired of that topic! When my friends and I get together - with or without the kids - we rarely talk about Brenna's skin, unless I have something major to tell them. We talk about things that all moms talk about. And that's how it should be. Because we're a typical family and we do our best to not let rare disease drive or define us.

I try very hard and put a lot of time into educating people about Brenna's condition and about differences in general…but advocating 24/7 would be exhausting. It is something that has greatly altered our lives…and bettered our lives in many ways…but it is not my whole life by any means.

On that note, I have received so many questions from people wondering about the best way to approach or interact with someone with a visual difference. This is something that I have been thinking about a lot, and a question that I have been posing to some friends and other families I know whose children have visual differences. So a blog post about that topic is coming soon :)

I can't emphasize enough how much your support and encouragement have meant to me when I write about really vulnerable and emotional feelings and experiences like that. I am continually amazed at how many of you relate to my writing yourself and how many don't relate at all but express how much it touches you and educates you. I wrote half of that post while sitting at swim lessons, quickly typing on my phone as Brenna snacked on pepperoni, then I finished it up later…and almost talked myself out of publishing it.

But I'm glad I did.

Because we all struggle with some kind of "swim lessons." And now you know you're not alone. And I know that we can all draw strength from each other to overcome those feelings of self-consciousness, inadequacy, sadness. We are all different, and we're awesome!

Monday, April 14, 2014

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. And in recent weeks, I've been asking her about her care before I do it: "Do you need lotion?" "Do you want eyedrops?"

I've been astounded and excited that she seems to be realizing more and more when her skin feels dry and when her eyes feel dry. I usually ask her several times a day if she wants eyedrops, and usually once or twice a day, she answers yes… even just a few months ago, the answer was always no.

Most recently, we've had to use a topical medicine on some areas of her skin. As soon as I carry her to her changing table, she'll grab the tube of ointment, try to say "medicine" and gesture to the areas where it needs to be applied.

Brenna is also very aware of any pain, and if she is whining for what seems like no apparent reason, I will ask if something hurts. She answers "yeah," I ask "where?" and then she'll point to her hands or feet or to her g-tube site if they are causing her pain.

In the same way that we teach independence to children by training them to use a real cup instead of a sippy cup, or teaching them how to brush their teeth by themselves, I want Brenna to learn early on how to care for her skin. Because I think this will open up a lot more opportunities for her she grows up - to participate in more activities, to attend more events and even to travel more.

I know we will feel more comfortable as her parents letting her go to a friend's house or a birthday party if we know that she will be able to tell an adult if she doesn't feel well or if she needs something… and I know other parents and family members will feel more comfortable with being responsible for her if she has an active role in her care.

Of course I know that general education will be necessary in a new situation or with a new person…but teaching her early to care for herself and to be aware of what her body needs will only foster independence and minimize reliance on other people to care for her.

If she comes home really dry from a friend's house, I want the burden to be on her to ask for lotion, not on her friends' parents to have to pester her to apply lotion. If she starts to feel unwell while playing outside on a warm day, I want her to be able to recognize this feeling and know how to cool herself off.

Our dermatologist "warned" us that Brenna will probably go through stages as she gets older - sometimes she will take a very active role in her skin care and look forward to baths and lotion…but there will also be stages where she fights it. (Like when I know I'll feel better if I don't eat a half bag of Doritos…but I fight that and down those chips anyway.)

Seeing the early stages of Brenna's interest in caring for herself is exciting… and when I step back and write about it, I realize my baby has really moved into the true toddler stage. Learning to eat has been a huge step toward independence for her, as she loves to self-feed, and I think she is discovering how proud she feels by doing things all by herself.

Sunday, April 13, 2014

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!

What I love about these three meals is that there is literally no prep involved - just dump all ingredients into a freezer bags and then, when you're ready to eat, it all goes into the crockpot. Freezer cooking made easy - perfect for the busy summer months.


Chicken Tacos
1 large chicken breast
2 T. taco seasoning
1 can corn (or around half bag frozen corn)
1 can black beans
(anything that strikes your fancy can go in - can of diced tomatoes, green chiles, etc.)

Put all ingredients in freezer bag, remove air and seal to freeze. Thaw overnight, dump entire bag into crockpot and cook on low around 4 hours. Shred meat at the end of the cooking time. Serve on tortillas, taco shells, baked potatoes, etc. with all your favorite extras - cheese, sour cream, salsa and more.


Chicken Broccoli Alfredo
4-6 chicken breasts
1 bag frozen broccoli
2 jars of Alfredo sauce (16 oz. each)
1 4-oz. can of mushrooms, drained

Put all ingredients in gallon freezer bag, mix together, and remove air and seal to freeze. Thaw overnight, dump entire bag into crockpot and cook on low for around 4 hours. Serve by itself or over noodles.


BBQ Applesauce Chicken
4 boneless skinless chicken breasts
2/3 cup applesauce
2/3 cup BBQ sauce
2 T brown sugar
1 teaspoon chili powder
1/2 teaspoon ground pepper

Put all ingredients in gallon freezer bag, mix together, remove air and seal to freeze. Thaw overnight, dump bag in crockpot and cook on low around 5-6 hours. Serve by itself or over rice.

Bring on light summer cooking!

For more freezer cooking ideas, check out my other freezer cooking posts and follow my Pinterest board.

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Friday, April 11, 2014

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. Babies in tiny bathing suits tolerating the cold water without a thought of discomfort or sickness.

The warm air in the pool area means that I have to dress Brenna in short sleeves and take her hat off, her hair sticking out in sparse patches and greased up with Aquaphor. I'm constantly worried about how hot or cold she is, and all the while, I'm thinking "for the love of all that is good, please DON'T TOUCH ANYTHING."

It's hard to shake off the stares at swim lessons. The wide-eyed watching from other kids, too young to know that they should look away politely. The second and third glances from other parents who don't know that I notice out of the corner of my eye.

There are very few situations that I think "I wish things were different." But I look at the pool with envy, and I wish that I could throw a suit on Brenna and splash around with her without a care about germs or water temperature. It's simple and not important in the grand scheme of life, but it's there, that wish.

Swim lessons make my heart just a little sadder. Some weeks, I just avoid everyone for fear of tears falling if someone looks at us the wrong way or says something about Brenna's skin. So I usually look down and don't meet the eyes on us.

I wrestled with myself about whether I was feeling shame, and I am not. I'm proud of my daughter and I wouldn't change the way she looks for anything. I would make her more comfortable if I could, but certainly not change her appearance. I love the way she looks, because it's her.

Sometimes, though, I just feel extra sensitive about it all…just a little more worn down by life with a rare disease, just a little more aware of the stares.

There will always be swim lessons in our life - situations where we are just more aware of our differences and a little sadder about our challenges. It is my hope to instill the confidence in my kids to shake off the swim lessons… to move forward with their heads high and meeting the eyes of others around them with kindness. And so, I will try to do the same.

Wednesday, April 9, 2014

In a BOOKSTORE...

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.

I'm not sure which one is better!

I am so proud to announce That's How You Know is now available at Barnes & Noble in Springfield, Illinois.

my parents
(And don't forget,  District 23 and Memorial Medical Center gift shop also carry copies…plenty of chances to grab a copy for the special kid in your life for Easter!)

Monday, April 7, 2014

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. Her body uses up all of her calories to make (too much) skin, and she needs an insane amount of calories to grow.

Well, now I know. She literally eats almost all day.

Brenna is still not a breakfast kind of girl, which is fine…because she makes up for it later in the day.

I am so relieved that she has now a decent amount of go-to foods that she will always eat - mostly meats like pepperoni, sausage, turkey, etc., but also crackers and Goldfish - but now our challenges are turning toward trying new foods. She is a stubborn 2-year-old…enough said.

One of our biggest struggles has been the fact that if Brenna refuses to eat what we're eating or what we originally give her, we scrounge around until we find something else she will eat. Our biggest priority, of course, is that she eats. However, it's really difficult to explain to your 4-year-old why his sister gets to eat summer sausage instead of the casserole, but he can't have a second option.

These are topics we're discussing in our weekly feeding therapy session, and we're getting close to being able to be more strict with pushing her to try new foods and not reverting back to her favorites all the time.

We are also, at the advice of her therapist, starting to simply expose her to more foods…even if she won't take a bite, we leave fruits and other foods on her plate. She is beginning to "kiss" some non-desirable foods for us, which is the next step in tolerating and trying new foods. And we're been excited to see that within just a week or two of leaving new foods out on her plate and getting her to kiss them has led to some bites of new foods - for example, steamed broccoli (that was then gobbled up), crackers with hummus, and green beans (dipped in ketchup, she ate a few).

Though in the first few weeks, Brenna wanted very little to do with fruits and vegetables, we've been seeing some success with those foods - some bites here and there, and enjoying home-made smoothies packed with produce. She doesn't seem to like sweet flavors (except chocolate, but come on, it's chocolate), but she has been diggin' on smoothies that have more of a vegetable taste.

After some smoothie success, last week I whipped up a few home-made squeeze pouches with our Infantino Squeeze Station. The bonus of home-made, besides being fresh and more nutritionally sound, is that I can add oil to it for more calories :)

Apples and carrots for the lady...

Our biggest triumph is that while Brenna's weight dipped way down, she never hit her maximum weight loss number…and verrrrry slowly, we began to see her scale numbers rise! We then got to the point last week where we got the exciting news that we could cut back her tube feeds even more! Now, she is getting a very small tube feed in the morning, a cup of water in her tube in the afternoon (just to ensure she doesn't get dehydrated, because her skin makes it easy for dehydration), and a full tube feed at night after dinner.

It has been a huge learning curve - even though oral feeding is obviously the natural course of action, it was not Brenna's normal, and so we've been having to figure out a new normal for her again. But every time I get to order her nuggets at McDonald's or fill a bowl of crackers for her while on a play date, instead of packing up the feeding tube and syringe if we have to leave the house during feeding time, I revel in that new normal.

I am so proud of my new big eater!

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