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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.

Saturday, September 13, 2014

Connor William turns FIVE years old!

My beautiful boy:

We have a regular ritual now, after your bath time. You always ask for it, and I always oblige. 

You bow your head down as I turn my blow-dryer on low, running my fingers through your short, soft hair as the air transforms your wet head into smooth, clean dryness.

One time, Daddy commented: "I remember my mom used to blow-dry my hair, and I loved it."

And I was struck with that, the fact that these little routines are now actually making memories in your mind. Will this be something that you will comment about to your wife and child one day, that your mom blow-dried your hair and you loved it?

Today, my precious son, you turn five years old.

Five years old means we are talking about grown-up things like responsibility and privileges.

Five years old means you listen and understand our conversations and ask questions. Five years old means that we can no longer spell out the simplest of words because you are starting to learn to read and spell. Five years old means questioning, pushing boundaries, exploring, arguing, making your own decisions.

 Five years old also means that we are now creating memories. True, lasting memories that will stand out to you as an adult. Every conversation, every experience has more impact the older you grow and will continue to shape the person you are becoming. As your mom, I'm so grateful to have that responsibility, even when it can feel heavy.

Connor, getting to know you over these last 5 years has been pure joy. As I work to shape you and teach you and help you become the best version of yourself, I never want to forget that I am also learning about you, too - the person that God created you to be.

That person is incredibly sweet and caring, with a very sensitive and introverted personality. You are inquisitive, cautious, intelligent, agreeable. You love with reckless abandon, never hesitating to give a hug or kiss to anyone you love. When I hold you close and breathe in your neck or run my fingers through your hair, you have never once pushed me away. If you've accidentally hurt your sister, you rush to "kiss it and make it better." There is nothing more special to you than family, and you even love to talk about when you become a daddy one day or an uncle to Brenna's children.

Happy 5th Birthday, to one special kid. We love having you in our lives each and every day - and we know God has big plans for you as you grow up!

Friday, September 12, 2014

Cruisin' in style!

There was a little jealousy in our house last week.

The kids got a new truck before Daddy got a new truck.

The new Step2 Ford F-150 Raptor truck was just released - our awesome blue version is a Sam's Club exclusive! (There is also a red version available through Step2.) 

Getting our little blue truck put together made me think of a certain book that we had never read… so when we popped into the library the next day, we grabbed the Little Blue Truck! What a cute story - the kids have loved it.

So I was especially excited about this truck, because of the removable floorboard on the bottom and the long push handle. Brenna is not yet big enough or strong enough to ride most moving toys, so I was hoping this would aid in her desire to ride around alongside her brother.

Let's just say she yells "truck!" and "ride!" the second we step into our playroom now. Being able to easily push her with that handle has just been a dream!

It's actually even been a way to encourage her gross motor skills - we used it about half the time in Physical Therapy yesterday. She got into and out of her truck probably 25 times -sliding in backwards, climbing in facing forward, from both sides.

The truck has a roomy back with cup holders, and the kids like taking their little stuffed animal friends for a cruise around the house. The 360-degree turning wheel in the front makes it SO easy to push and maneuver, and Connor will often push his sister around. (The doors lock from the inside, so I don't have to worry about anyone toppling out if the steering gets a little crazy :) )

Thanks to this beautiful fall weather, we've also gotten to drive the truck around our new neighborhood a couple of times.

This girl loves her new truck!

I guess Daddy will just have to push the kids around in their truck for now while he waits patiently for his own big blue truck someday :)

As a Step2 Blog Ambassador, I received this product in exchange for my honest review.

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Wednesday, September 10, 2014

Preparing to transition to the school system

Brenna's big 3rd birthday is looming in less than 4 months, which means one thing in the world of "special needs"… transitioning from the state's birth-age 3 program (Early Intervention in our state) into the public school system for services.

Last week, we had our first such meeting to begin that transition, which will also bring a couple more meetings in the next few months - to create an IEP or 504 plan for Brenna, to evaluate her for therapies that she will have at the school, to figure out exactly what services she will quality for.

This is a whole new world to navigate and one that we've been trying to prepare for. We selected our new home specifically for its school district, and we visited the elementary school last spring, met with the principal and brought them brochures of information about ichthyosis from FIRST.

During the FIRST family conference, Evan and I attended a breakout session about education and the school system, and even though it felt a little early, I'm so glad we did it because it got us thinking about things that hadn't even crossed our minds.

Sure, we knew Brenna might need an aide and other assistance…but we didn't even consider things like making sure the school bus has air conditioning, or otherwise coming up with alternative transportation. What happens if there is a field trip outdoors and it's too hot? Where can she go if there is a fire drill, but it's too hot for her to stand outside? What if there is a substitute teacher who is uneducated about ichthyosis? I took notes like crazy during this conference session.

We've been constantly reading about other families' experiences with their schools - struggles and accommodations and bullying and inclusion and all kinds of situations. And we've been asking questions specifically of other families who have children with Harlequin Ichthyosis - why do they have a one-on-one aide and what does their aide specifically help with? What are the resources we need to give the school to help educate everyone - from teachers to cafeteria staff?

There is the obvious - making sure infection risk is minimized and making sure temperature is not an issue - to the little things, like having a small dust buster available for quick and easy clean-up of skin flakes.

In our meeting last week, I noted that Brenna likely wouldn't need any Aquaphor applications during preschool… it is only a 2.5 hour time period. But there are so many other things that kept popping up in my mind that I think I probably gave the social worker a hand cramp from her note-taking.

Infection risk. Temperature. Mobility issues. Making sure she is getting enough to eat and drink. Assistance with tasks like going to the bathroom. Etc. Etc.

And yet, I didn't find it overwhelming. Not yet anyway. The conversation actually sparked more of an excited anticipation for me.

I'm excited for Brenna to experience school. Because I know she will thrive. She fights against leaving the classroom when we drop Connor off in the morning, and she begs to play on the playground when we pick him up. She watches all the kids and says hi and wants to play too.

We are determined to get her whatever she needs to be successful in the school setting and help prepare her for donning her little backpack in just 11 short months. And I can't wait for her to get to experience school.

Do you have experience with transitioning from a birth - age 3 program to the school district, or creating an IEP for your child? What challenges have you had or what important things have you learned? I'd love to hear about it as we start this process.