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Monday, September 29, 2014

How Our Son Pushes Us, In the Best Possible Way

Grabbing our towels to head to the pool.

Throwing on our shoes for a trip to the park.

Jumping into the lake after a boat ride.

Sitting outside in the summertime.

Sledding in the snow.


Things that I didn't give a second thought to, before Brenna was born.

After Brenna was diagnosed with Harlequin Ichthyosis, temperature took on a whole new meaning. Germs were of much greater concern. Aquaphor schedules and long, difficult baths and tube feedings have threatened to overwhelm us many times throughout the past 2.5 years.

Had Brenna been an only child, our first child, it would have been so tempting to hole up in our home for most of her life - avoiding germs, dodging stares and questions, remaining in the ideal humidity and temperature that our house offered. Outings have seemed so hard sometimes, and activities like being outside in the hot summer have felt nearly impossible.

Yet, we had an older son. Another child who wanted to go to the pool, to the park, on the boat, on the sled, to the waterpark. Outside. Around people.

And Connor gave us the greatest gift by pushing us to live as "normally" as possible, purely because of his needs too. His needs for attention and activity and enjoyment outside of the house.

I know without a doubt that what we do as a family now is all in thanks to Connor, and I'm grateful that he has removed any temptation to stay in, to not try new things. 

During Connor's first soccer games this fall season, temperatures neared the mid-90s, but that didn't deter us. All three of us, plus grandparents, were on the sidelines, with Brenna's cooling vest strapped around her body as we rotated turns spritzing her off with a spray fan and dabbing her head with a cooling cloth (a Frogg Togg, specifically.) It was not the same scene as the families around us, their kids running around sweating, but we did it without Brenna overheating, and we were so proud.

Connor pushes us. And what we found out is that when we are pushed, Brenna's condition is only as limiting as we make it.

Because of our son, we have all experienced more as a family these last 2.5 years, and because of her brother, Brenna has had a much more enriched life, experiencing pools, sporting events, museums and activity houses, cross-country road trips, parks all over the area, libraries, malls, and countless play dates with friends.

Bringing Brenna home was a terrifying time, and figuring out her health care while balancing the needs of two very young kids was so difficult. But God knew what he was doing when he gave us Connor first. He was showing us that Brenna can always do more than we might think she can, and he gave us Connor to prove that, to push us into doing more than we might have otherwise thought possible.

Friday, September 26, 2014

Friday Favorites: September 26

Is next week really October? The fall is flying by, and after a couple of busy weekends coming up, I plan to savor the rest of this beautiful season with relaxation, football, soups, and pumpkins.

I've decided to jump in with The Nester's 31 Days challenge, where bloggers write on a specific topic every day for the month of October. I wrestled with what to write about, and have finally landed on my topic…now comes the hard part of figuring out how to post every single day!

A round-up of some of my favorite things, reads, and events this week…

1. For anyone wondering why I prefer freezer cooking over trying to pull together a new dinner each night…this is the general reason.

2. We joined the Nick Jr. Birthday Club for Connor's birthday…which meant the Paw Patrol called him to wish him Happy Birthday! It was the cutest thing in the world. He completely lit up and said "hi!" to them, like it was the real puppies on the phone. (It's completely free, in case anyone is interested. Brenna will be getting a call on her birthday from the Bubble Guppies :) )
Also, this cake? Amazing! Our friend Kathy made it as a special surprise for Connor. (This wonderful lady has brought us a meal EVERY month since Brenna was born, as a way to bless our family.)

3. I just finished up the book 7: An Experimental Mutiny Against Excess by Jen Hatmaker. I'm completely reeling from it. And I now have another book of hers, Interrupted, requested from the library. It really challenged me, in such a good way, and if you need a little wake up with your faith and religion, definitely consider reading it.

4. We have now been to our new town's library 3 times, and I couldn't love it more. It's so little and perfect and peaceful. There have never been other kids in the children's area, so we play and read and explore the different kinds of books. There is a cute little shopping cart that Brenna likes to push around the whole kids' area - so it doubles at physical therapy work too, score! And being only 3 minutes from our house, I think the library is going to be our second home this winter.

5. Tonight is Connor's last soccer game for the season. Can you hear my sigh of relief over here? :) Also known as, soccer's not really his thing. But he looks pretty cute in his uniform!

Some favorite moments from the week…

Coffee this morning, anyone? (this picture got lots of love on Instagram!)

Happy girl!

Attending a wedding a couple of weeks ago - Brenna felt so fancy in her dress and bow :)

Playing dress-up. Brenna went with a Mary Poppin/SuperWoman combo. Sweet and strong.

Climbing…and stuck.

Loaded up with our coffee, water and neon shades…ready to cruise.

Occupational therapy became group therapy this week - Connor wanted in on the spinning board!

Happy Friday!

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Wednesday, September 24, 2014

Change how you see, see how you change: Positive Exposure

I excitedly ripped open a thin package last Friday to reveal something I'd been waiting to see since June - our beautiful photos taken by renowned photographer Rick Guidotti at the FIRST family conference.

Brenna took entirely too long to warm up to Rick, but he eventually was able to capture that bright-eyed smile!

I first heard about Rick Guidotti from Carly's blog, and as I clearly have some interests in photography, I had it on my to-do list to email him for months before I finally did in late winter this year. He emailed back right away and said that he was going to be at the FIRST conference. So I stalked him the second I saw him :)

Rick is an internationally known photographer who used to shoot for high-end clients like GQ, Elle and Revlon. He was all wrapped up in the world of fashion perfection when one day he saw a young woman with albinism and was so struck by her beauty. He tried to research albinism, but all he could find in the medical books were sterile-looking photographs with people's faces covered by black-out squares. And this really bothered him. Because he found this young woman so beautiful, and yet society only saw her by her condition. He found those medical books so dehumanizing.
So Rick walked away from fashion photography.

And he began a non-profit called Positive Exposure, where he photographs people of all colors, appearances, abilities and disabilities. The focus of Positive Exposure is "Change how you see; see how you change." 

Rick's enthusiasm for his work is just so uplifting - He radiates joy and loves people. And best of all, he immediately makes his subjects feel at ease…and when you feel at ease, you feel confident. He is giving people all over the world an incredible gift of confidence and the ability to see themselves as beautiful. We all felt so honored at the conference to be able to be photographed by him.

Some of our friends in the Harlequin Ichthyosis community

Of all of the beautiful stories Rick shared, my favorite was about how he became involved with the Sibonile School of Blind in South Africa. The kids at the school - many of them with other disabilities or conditions like albinism - formed a singing group and were eventually asked to perform (I forget the details now, but it was at a huge hall in front of a large audience.) They said they would only perform if Rick came for support, so he flew there to help them.

He showed us footage from their concert, which was just… to say 'wonderful' is not enough. They were so nervous, and they completely rocked it. And then at the end of the concert, the applause began, and the kids freaked out. They were confused, almost scared for a minute or two. Know why?

They had never heard people clapping for them before.

These kids had been completely rejected - by their families, by society. They had been scorned, mocked, pushed, spit at. But they found themselves through their gifts of singing, their voices molding together to form these beautiful sounds. And their singing allowed people to see them as more than just "blind kids." Go here to see video footage of these beautiful singers - they are just captivating.

Rick said something at the FIRST conference that I will continue to be inspired by for a very long time…

"It's not about competing with that beauty standard set by Vogue; it's about setting our own beauty standard…. People either stare or look away, and looking away can be even more painful than the stares. So we need to steady that gaze long enough to see the beauty in difference, to look around the diversity to see what we all share - which is HUMANITY." 

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Monday, September 22, 2014

Special Skin: When My Kids Realized

We were driving along on a back country road, on our way to a friend's house, when it finally came.

Connor piped up from a quiet back seat as we listened to the country music on the radio.

"Remember when that person didn't know that Brenna has special skin?"

I stalled. I didn't expect it. And so I took my time trying to decide how to respond.

"Which person?" I asked him.

"I don't know," was the reply.

"Yes," I said carefully. "Sometimes we just need to tell people when they don't know, don't we?"


And then, from the other side of the car…

"Special skin!"

Brenna exclaimed the words, and with her left hand, she pointed to her right arm and rubbed her finger along the crook of her elbow. "Special skin," she repeated.

Yes, special skin. 

I feel like I've been found out. 

It was inevitable, but still. It hurts. It hurts to know that so many people have asked about Brenna's skin or commented on Brenna's skin that both kids have heard us explain her "special skin" so much, they now know this phrase without anyone bringing it up.

Truth be told, I want to shield them from this forever. Because right now, it is simply "special skin."

But it won't stay like that.

It will eventually morph into noticing those kids staring or hearing "what's wrong with your sister?" It will eventually become rude comments or maybe even games in which the other school kids try not to touch her skin.

And the responsibility of teaching both Connor and Brenna how to react or respond to these situations feels so daunting sometimes.

As their mother, sometimes I feel so completely stuck between the protective mama bear that wants to jump all over everyone who gives her a funny look, and wanting to model the best way to respond to public reaction. Exemplify confidence, self-assurance, and even kindness. (Sometimes even to the rude people…darn that whole 'setting an example' thing.) And it can be hard to figure out what to teach as the best way to respond in each new and unique situation, with each new and unique question, when I'm still trying to figure it out myself.

So we take it one step at a time, trying to prepare without letting it invade our very full and happy lives.

And I hope that we can help people see that this "special skin" is only one part of our lives, and if they don't let it obstruct their full view,  there is a lot more to our story.

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Friday, September 19, 2014

{Celebrating Beautiful} The Beauty of Diversity: a guest post by Megan Nilsen

In blogging for the last 2.5 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've decided to start a guest blog series called Celebrating Beautiful, as it relates to beauty however it can be interpreted: motherhood, faith, your kids, an experience, home, and so much more.

I met Megan through our mutual friend Courtney at the She Speaks conference, and since Courtney was one of the conference presenters and tied up with other things, Megan and I decided to grab dinner on the night we arrived in North Carolina within 15 minutes of meeting. Over Mexican, we dove deep into each other's lives and completely connected, and were practically inseparable the rest of the conference :) She has an amazing story to share, and I'm so glad to know her.
Here is Megan Nilsen on Celebrating Beautiful...

“Though we travel the world over to find the beautiful, we must carry it with us or we find it not.”
 - Ralph Waldo Emerson

I may be just the teensiest bit biased, but I believe Ethiopian people are some of the most physically beautiful people on the entire planet.

Wouldn’t you know, two of those people just happen to be living under my roof?!

Our two youngest kids are Ethiopian-born cuties who boast silky chocolate-brown skin, liquid-black eyes and 1000-watt smiles that melt even the most stoic of hearts.

And yet, they don’t necessarily think of themselves as “beautiful.”  Ugh.

Mostly because (oh how this breaks my heart to say it!) we live in a predominantly white community and my kids feel different.  And somehow, the unwritten code woven into the fabric of human society for centuries is that “different” is not always “desirable.” 

That somehow different does not mean beautiful. 

This counterfeit notion is never more present than in the strict, socially-ordered confines of adolescence.  Somewhere after the age of five and before the age of, say… thirty-five, many of us fall into the trap of comparing ourselves to others.  We want to walk like they walk, talk like they talk, dress like they dress.  Because, if “everyone is doing it” then it must be right.

The key is to blend in - not to stand out.  Same is good.  Different is weird - intriguing, but much too risky.

Granted, there are some kids who unapologetically march to the beat of their own drum straight out of the womb. But for most of us (me being one) this is not the case. 

Not only did I spend a majority of my formative years frantically looking around to compare how my steps fell in line with the cadence of those around me, I was even known to change my own thoughts and opinions to fit into the box of perceived expectations. 

Rather than being an influencer for good, I often fell prey to being influenced by others for who knows what nonsense. 

Honestly, it saddens my big-girl heart to look back at some of the grief I invited into my own life because I was too afraid to be different.  Not confident enough to use my personal, independent, God-given voice.

I’m going to out myself right here and now and confess that it wasn’t until quite recently - maybe right around my, ahem, 40th birthday - that I truly realized what it means to embrace the beauty of diversity.

Perhaps this gift was given to me expressly because I am raising four distinctly different human beings who are equally like and unlike me in so many ways.  If one were to draw a circle and slice it into fourths, I could write each one of my kids’ names in a different quadrant.  They are THAT different from each other. 

And, in my opinion, their differences are EXACTLY what makes each of them all the more beautiful.  And what makes our family that much more whole. 

It is quite possible I could be raising a future architect, teacher, stylist-to-the-stars and circus performer.  Or, each one could surprise me entirely with some other God-given dream yet to be uncovered. 

My main prayer is that I would help them discover, not cover, their unique gifting - gifts God specifically planted in each of their hearts to help make this world a better, more diverse, more beautiful place.

My Ethiopian-born son’s ELL teacher recently reflected on his sweet, yet complex personality.  She said, He is one of my very favorite students because he has such a beautiful heart.  He could be a physician, a nurse, a medical assistant or a CNA, but no matter where he lands vocationally, I know he will make an amazing worker and a wonderful Dad because he knows how to love the people around him. 

Be still my heart!  That. Is. It.  That right there is what I want for my kids. 

His different is being recognized in some of the most unlikely of places.

And it is beautiful. 

PS I feel beyond honored to contribute a small slice of my life on this blog.  Little Miss Brenna and her family have become an inspiration to me as they have to countless others!  Her story unites thousands of us, from all walks of life, because, in a sort of holy paradox, we see profound power in her powerlessness; a voice for the voiceless.  Because this little girl was born we are changed for the better.  And I have a voice.  Blows my mind - every time! Thank you, Courtney for painting for us a different kind of beautiful.

Megan Nilsen is the mother of four children - two biological, two adopted, and by all accounts the coolest kids in the world (at least according to their unbiased mother).  She is married to her college sweetheart who dedicates his time to family and the ministry of Young Life.  She currently serves as the rarely-at-home stay-at-home Mom of this motley bunch who live and play in Colorado Springs, CO.  Megan passionately pursues writing as a way to process God’s ever-active work in the world.  She gets the biggest rush out of high quality coffee, connecting with people and swapping stories of the heart.  You can find her blogging about it all or follow her on Twitter.

Tuesday, September 16, 2014

The Power of Words

I was in Target... in a hurry to find a wedding gift, annoyed that the registry printer wasn't working and flustered by the kids' chorus of asking for snacks or to look at this or that.

"Is this Breanna?" a woman asked from behind me, pronouncing Bree-Anna (which happens way too much for there not being an A in the middle of her name.)

"It's Breh-Na, yes," I responded, and she was smiling and excited to meet her. She was a Facebook follower, she explained. She had a daughter with her, who I couldn't see well behind me, but seemed to be a tween or young teenager.

Her daughter pointed over my shoulder. "She has... skin peeling on her neck," she said.

Her mother jumped in quickly: "Yes." And then, flustered: "She has a skin…thing."

"And she's really…red," the daughter continued in that flat, sassy teenager tone that makes all moms want to scream.

"Yeah, that's how she was born!" I chirped WAY too cheerfully, as I started to push the cart away.

It was no longer than 10 seconds, but the effect of that encounter was a bad mood that lasted the rest of the afternoon.

I felt almost ambushed that what should have been a nice conversation from someone who actually knew about Brenna's condition turned almost immediately offensive. And even worse, to me, is that my kids shouldn't have to be subject to conversations like that, especially from people old enough to know better than to talk about someone's appearance in such a rude way.

They say to not let things like that bother you; they tell you not to let ignorance have such an effect on you. But it's really hard not to. I was nearly fuming long after our Target trip (and it didn't help that I couldn't locate the right presents from the wedding registry or that my kids ate most of a bag of pepperoni even before we checked out.)

I was so struck by the power of that one conversation…and dismayed by how it affected me.

And then Saturday morning rolled around.

We were celebrating Connor turning 5 years old, and headed out to a local cafe for a Birthday Breakfast.

We had just ordered a delicious spread of sausage and gravy and pancakes and eggs when a young woman stuck her head around the side of our booth.

She was bright-eyed and smiling and she said "I follow your page on Facebook, and I just wanted to tell you that I think your family is just perfect and beautiful."

I think our beaming pride could have lit up that little cafe.

How much more special did she make our outing with those heartfelt, simple and complimentary words?

It had the opposite effect as the encounter the day before, leaving us happy and proud.

The power of one little conversation. The power of your words.

We make a hundred decisions every day about what to say to people, how to say them, what tone to use, and ultimately, what kind of person to be.

I'm finding all the time that choosing kindness - even despite what we may be internally feeling, wondering or thinking - is more powerful than we might imagine.

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Monday, September 15, 2014

Learning More about Healthy Living

As time goes on and we've noticed some more chronic issues with Brenna's condition - especially her arthritis that greatly affect the joints in her hands and feet (and I assume elsewhere too, it's hard to say right now when she can't express that), I've begun to take a keen interest in more natural ways of healthy living.

Alternative medicine is something that has always fascinated me, since I learned about it in my first job as a health reporter for a newspaper. I totally swear by taking oregano tablets to ward off an oncoming cold and won't take anything else!

Since Brenna's birth, our lives have revolved around doctors and medicine and other modern medical procedures and findings. And don't get me wrong - she wouldn't be alive or where she is today without modern medicine.

But I've also started to explore some more natural ways of living - namely essential oils, changes to our diets and eating, and natural cleaning.

And oh man. I just don't know if I can give up my beloved Doritos. We definitely have love affairs with certain processed food around here. But I know we don't have to radically jump in headfirst. We can start making small changes and experimenting what works for our family.

I was so excited to read that the Ultimate Healthy Living ebook bundle is finally available, as I've been waiting for weeks to get my hands on it. Seeing the list of ebooks packed full with so much information I've been wanting to learn more about made me whip out my Kindle this weekend to begin downloading!

The Ultimate Healthy Living Bundle packs together ebooks and e-courses worth $1,030 and is just $29.97! (I love these bundles - I bought the Ultimate Homemaking Bundle last year, and it gave me a good kick to get better organized, purge a lot from our house and try some new freezer cooking methods.)

I just feel like this Health Living Bundle came out at the absolutely perfect time, as I'm ready to learn and start making some better choices.

I'm particularly interested to read:
The Essentials of Essential Oils
Kids Eat Real Food
DIY Natural Household Cleaners
7 Day Real Food Challenge (7 days - even I could do that, right?)
Grain-Free Meal Plans Freezer Cooking Guide

There's a whole section on Real Foods - sign me up! I'm just going to read one at a time, so I don't get overwhelmed. "42 Simple and Healthy Dinners" and "Easy. Homemade." look fantastic, and there are 2 ebooks about smoothies, which I feel is a super simple and easy way to add more nutrition into our lives, especially since both of my kids love smoothies.

So here's the deal - I hesitated about whether I should even blog about this, because I don't like promoting a lot of stuff when the main focus of my blog is my family. But this is something that I am truly excited about and that I plan to use to help our family and our lifestyle, and I know so many of my readers are excited about healthy living too, so I ultimately decided to become an affiliate so I could share about it. (Being an affiliate means that I earn a small amount from any bundles purchased through me, so I really appreciate you clicking through my links.)

The Ultimate Healthy Living Bundle is only available through TODAY, so if you are interested in reading even just several of these books, grab it right now!

Go here to purchase if you want to learn more alongside me!

I am really excited about all of the great information (and seriously, at such a amazing price) packed together. I've been trying to learn about many of these topics over the past couple of months, and it can be daunting, and time-consuming, to weed through blogs and websites to get the most practical or essential information. Now it's all right here to learn about.

I'll be starting with smoothies. And clutching my bag of Doritos until the end. Baby steps.