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Friday, August 22, 2014

Moving into our new home!

Yesterday afternoon, we stormed our new home with cleaning supplies and several willing family members ready to carry, clean, unpack and organize.

And after 5 weeks of excitement and waiting, we spent our first night in our new home!

So much will still be a work in progress, but it honestly feels like a completely different house with simple changes like paint, the new addition of Brenna's bathroom and an upstairs laundry room, and some newness in the kitchen.

Before and after of the living room/family room
Brenna's new bathroom is what she is most excited about. Whenever we talk about the new house, she will exclaim "bathroom!" (There has also been lots of talk about using the bathroom, so *here's hoping* that this will be a good motivator for potty training.)


And oh yeah - our MicroSilk bathtub is installed and ready for lots of soaking and exfoliating baths!

I know it will take a bit to get settled, but I'm so grateful to now be in our new house (and equally grateful to my parents for sharing their house with us for the last 3 weeks!) I'm more than ready to start organizing and find our new routine!

Wednesday, August 20, 2014

Back to School!

I looked at my summer calendar... blinked ...and landed on mid-August.

This week, Connor started school again, and I'm left wondering where summer went. How has it already been three months since he dressed up in his St. Louis Cardinals gear for his end-of-the-year baseball party in May?

This year, Connor is proud to be walking into the 4-year-old preschool class, way on the other side of the school building, complete with its own preschool playground right outside of his classroom. He will be attending 3 full days each week, which we decided would be a good transition to 5 full days of Kindergarten next year, and he is excited to get to eat lunch in the cafeteria and bring a lunchbox to school this year.


Connor is much more confident this year. He is very much an introverted person and a homebody, but once we get him out, he is excited for the events and people around him, even if he hangs back watching instead of jumping headfirst into participating.

He is my "quiet activity" kid. He loves to read, to do puzzles, to watch his favorite shows of Wild Kratts or Paw Patrol, to enact elaborate games of pretend - and on any given day, we pretend to be koalas or Berenstain Bears or superheroes. His imagination knows no bounds.

Yet quiet activities don't necessarily mean quiet. Connor does not stop talking or asking questions. Ever. The silence while he was at school on Monday and Brenna was napping was a shocking new reality. I actually heard myself think :)

This school year, Connor, I pray that you hold on tight to your sweet and caring disposition. I hope that your curiosity and imagination never leave you. And I pray that you will always do your best and be your best. My thoughts from when you started school last year all still ring true, and you continue to make me proud every day to be your mom.

Happy school year!

Monday, August 18, 2014

Dear Parents: Will You Talk To Your Kids About Differences?

Dear fellow parents,

We do a lot of preparing for a new school year, don't we?

My oldest is still in preschool, and yet I feel the rush already - back-to-school events, shopping for school supplies, new shoes, haircuts, getting my camera ready for the first day of school.

There is shopping to be done, schedules to be coordinated, sporting events to drive to. There is so much  excitement over a fresh start, new school supplies, crisp soccer and football uniforms.

We do a lot of preparing for a new school year…for the classroom and for the sports and other extracurricular activities.

But I've been thinking lately that maybe we should do a little more preparing for the people.

A little more preparing for the friendships, for the conflicts, for the teamwork, and for differences.

Can I ask you to do something for me?

Will you make time to bring up the topic of differences to your children this week?

Talk to them, prepare them for other kids who may be different than they are. They may look different, they may talk different, they may dress different, they may like different things.

Explain to them why differences are so wonderful, why they make each of us so special. Teach them that by loving themselves and by loving others as God created each of us, we are praising God. We are God's masterpieces.


It doesn't have to be a long, drawn-out conversation. It can be a simple explanation, or a casual comment, or you could read some books about being yourself and celebrating differences.

I encourage you to be positive, because there is nothing sad about being different. Differences are a good thing, and kids need to learn empathy and understanding without pity.

This school year, challenge your children - not only in academics, in extracurricular activities, but also in relationships. Challenge them in love, in compassion, in kindness. Challenge them not only to do their best, but to be their best - to themselves and to others around them.

And most of all, let them know that differences aren't so different after all, because we are all different. 

From one parent to another… Thank you.

Friday, August 15, 2014

Friday Favorites: August15

I admit that I've kind of been a storm cloud lately, as we're hanging in transition while living with my parents and waiting for renovations to be done on our new house…not to mention preparing for school to start on Monday, grieving after a hard week of losing Evan's grandpa, and other life occurrences. I don't do well without order, so I've been trying to take a deep breath and maintain some level of patience and sanity!

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

1. A highlight of our week, and definitely deserving of number 1 on a favorites list, is the Illinois State Fair! Evan and I, the kids and my parents all headed to the fair on Monday night with visions of corn dogs dancing in our heads. We got caught in a 10-minute torrential downpour while at the petting zoo tent, but that did not deter our appetites.

Brenna got her first taste - literally - of the fair, and I think she wants to live there. She downed a hot dog, half a gyro, some lemon shake-up, cheese fries, and soft-serve ice cream - yum! (And I'm not even kidding, she wanted more to eat after we got home.) We saw a bunch of friends, rode some rides (including the Giant Slide over and over with Connor), and admired the famous Butter Cow!

2. Living with my parents has its ups and downs - though many more ups than downs, especially as they've been happy to jump in and help with the kids. It's hard to invade someone else's turf, but one of the perks is less to do around the house. Because I've been feeling a little more stressed with all of the chaos lately, I've been treating myself to some afternoon reading time in the cozy sunroom during Brenna's nap. I pull out my Kindle and a Coke, and pretend I'm on vacation for a half hour :)

3. Speaking of reading, I finally broke open a fiction book (well, as much as you can open a book on your Kindle) with the Young Adult novel Eleanor & Park. I wasn't a huge fan of the language, and between that and the slow start, I almost put it down. But after it got going, I was so into the story, and I couldn't wait to pick it back up.

I also recently flew through Donald Miller's Blue Like Jazz, and after reading that and A Million Miles in a Thousand Years this summer, he's become a new favorite writer of mine.

4. I discovered that a fellow ichthyosis mom has an adorable online gift shop, The Pretty Chicken, and for the month of August, she's donating $4 from the sale of these fantastic Be Brave bracelets to the Foundation for Ichthyosis (FIRST). At just $8, they're a perfect gift for anyone! I picked up one for myself, and one to give away to someone who needs a sweet reminder about how courageous they are.

Some favorite moments from the week…

My mom broke out a Mr. Potato Head puzzle with decal body parts, and we got a little silly with them one morning :)

Pucker up!

Oh my girl. She is going to be the best mommy one day. She is so smitten over any and all babies, and whenever I tell her we're going somewhere, she wants to know if there will be a baby there. She was ecstatic to get to "hold" her little friend during a recent play date.

We recently had one of those Sundays that was truly a day of rest, and it felt so good. We ignored schedules, to-do lists and any thought of responsibility, and just enjoyed each other. In the afternoon, my mom and I went to the pool with Connor, while the other half of the house took afternoon naps. It was glorious.

Sleepy snuggle time with Daddy

Yesterday, Connor got a haircut, and Brenna was really excited about getting one too. Evan's aunt cuts his hair, and the past few times we've gone in, she'll put Brenna up in the chair to prepare her for her first real haircut (which I think will be soon!)
So yesterday, we plopped her in the chair, draped the cape around her neck, and Evan's aunt picked out her wispy fuzz with her comb, while Brenna exclaimed "haircut tickle!" She even spritzed some hairspray behind Brenna's head and then held up the mirror at the end.

There were some excited squeals from the face in the mirror :)

Happy Friday!

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Wednesday, August 13, 2014

New meanings

A couple of months ago, I had a quick minute when the kids were occupied in the late afternoon and I took advantage of that time with a frantic, end-of-the-day cleaning session.

As I put away laundry in Brenna's room, my eyes settled on her big pink picture frame that hung above her changing table. Aquaphor smudges almost completely covered the bottom part of the frame and even extended up onto the picture itself, from where Brenna had reached up and grabbed at the frame.

I smiled so knowingly, so lovingly, that in that second, I recognized a new feeling in my personal journey since Brenna's birth. I am still grappling with how to describe it, but it was a feeling of not just acceptance and trust in God, but an all-encompassing love…a love where I can see clearly each of my kids' unique characteristic, physical attributes, little quirks and personalities, and love those things, all of those things, exactly as God has created them.

I realized I have passed over into a new phase of Brenna's health diagnosis.

I don't just accept her condition… I find every little part of her so endearing and so love-able.

I see the piles of skin she leaves behind and I smile.

(And I had to laugh the other day when Connor pointed to a spot on his bed, where Brenna had been sitting, and exclaimed, "Uh oh! Crumbs!")

Aquaphor smudges no longer bring tears, but instead they carry a new meaning. If there is Aquaphor on my shirt, that means I have been snuggling with my baby girl. If there is Aquaphor on the couch, that means that Brenna has insisted on sitting up there next to her brother like a big girl. If there is Aquaphor stained all over our board books, it is simply because our sweet girl is enamored by the words and pictures inside, insisting "buh! buh!" for book at every spare moment.

I am discovering that all of the things I originally saw as something that made our family different - the extra laundry and Aquaphor stains, the skin shedding, the therapy, the cooling vest, the syringes and medicine spread out on our kitchen counter - these pieces of our life have new meaning to me now.

These pieces of our life mean that our little girl is alive and thriving. They mean that our house is filled with joy and love and more concern for our children than our clothes and furniture and opinions from anyone else.

These pieces of our life are more endearing to me than I ever thought they'd be, more beautiful that I ever imagined, and truly much less "different" than the world thinks they are.

Monday, August 11, 2014

{Celebrating Beautiful} Empowering TinySuperheroes: a guest post by Robyn Rosenberger

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've written about Robyn and her huge heart several times before, as our journey together began in January 2013 when she contacted me about making superhero capes for Connor and Brenna. We got to meet in person last year, and then we got to see them again last month! (Oh, and Brenna is flat-out obsessed with Robyn and Joe's new baby Milo, and asks to see pictures of "Mi-mo" on a daily basis!)
Here is Robyn Rosenberger on Celebrating Beautiful...
The other day I was speaking with a lovely woman who works with terminally ill children at the Children’s hospital where I live. While we were chatting she told me that one of the core values of her Pediatric Advanced Care Team was to be fearless, and that she saw me as fearless.

Her comment struck the deepest part of my heart. Being fearless is something I strive for, but these days I find myself being much more fearful than fearless. I couldn’t believe that she saw this quality in me.

Whether it's fearlessness, kindness, beauty, or wealth that we strive for, I think it's true for most people that we’re rarely satisfied that we’ve actually fulfilled what it is that we want to be. I know this is true for me.

Before my first child was born, we entered our 20-week ultrasound with one thing on our mind: were we having a boy or a girl? I entered the process of becoming a mother with the assumption that he would be healthy.

I don’t think there was anything wrong with who I was during that time, but I am forever grateful about the change that happened to my heart before I gave birth to my second, a change that began when I first read Brenna’s story.

My first son was born just 2 months before Brenna. Through a mutual friend, I was introduced to Brenna’s blog and read it daily. I had recently picked up sewing as a hobby and chose superhero capes as my one and only project. One day I felt led to mail Brenna a cape. It seemed that Brenna and her family already knew how Extraordinary she was, but I wanted them to hear and know that I, a stranger to them, knew she was Extraordinary.

Brenna’s cape lead to 10 more capes, which lead to hundreds, and eventually 4,000 capes were sent to kids overcoming illness and disability in the 12 months after sewing Brenna’s. I called the mission TinySuperheroes, and I still can’t grasp the ways it has transformed my heart.

I had been running TinySuperheroes for almost a year when I found out I was pregnant with my second son. Because of the Extraordinary kids I have had the privilege of getting to know, I wasn’t as worried about gender when we went to our 20-week ultrasound. This time I knew (even if only a little) just how precious, fragile and miraculous life really is. 

Because I spend my days with families who have children who fight big battles, people often ask me if it’s sad.


I have never met a single family among our TinySuperheroes who I would describe as sad.

Sure, they endure things that most of us will never understand and face realities that would be hard for anyone to swallow, but sadness isn’t the impact they leave on me. In fact, I often envy how these families seem to break through their fear and learn to love each and every day. Almost unanimously, they choose to see the joy.

Now, I strive to raise and love my family by the example these families have given me.

And what does this have to do with being fearless? Well, I’m going to continue to strive to be fearless.  I hope that as I do so, I'll have the incredible blessing of more people like the woman at the hospital to encourage me. And in turn, I'm going to continue to do the same and tell these children that they are Extraordinary. 

And tonight, instead of worrying that I’ve become fearful, I’m going to look in the mirror and tell myself that I am fearless. I hope you’ll do the same.

Robyn Rosenberger is a proud wife, mom to 2 boys, and has the privilege of empowering Extraordinary kids through Superhero capes! You can find TinySuperheroes on their web site and on Facebook. To join Robyn in her wonderful mission, consider sponsoring a TinySuperhero on the waiting list, or you can purchase a cape for a TinySuperhero you know!

Friday, August 8, 2014

See you soon, Poppy Harold

He didn't like the sound of "Great-Grandpa," so he became Poppy Harold to our children.

But Great-Grandpa would have suited him well, because he was a great, great man.

When Evan called me with the news on Monday, I wasn't much for comforting him over the loss of his grandfather. Because I felt like I had lost my grandfather too.

Poppy Harold became the grandpa I never had, as mine both passed away before I knew them. He was quick with a smile that would crinkle around his eyes and his standard greeting: "How ya doing, Court? What do ya know, Evan Bob?!"

Poppy Harold was a baby whisperer, and most family gatherings would find him in an easy chair with a sleeping baby snuggled in the crook of one of his arms. With 17 grandchildren and 9 great-grandchildren, there was always a baby who needed Poppy Harold's arms.

Poppy Harold began a grocery store when he was young, a small town grocery store that he ran for more than 50 years. One of me and Evan's favorite things to do was load up the family on a weekend and head to Poppy's grocery store for lunch, stocking up on his delicious deli sandwiches and potato salad.

Poppy was always behind the meat counter, his face erupting into a smile when he was us. His family, his employees and his customers were his life, and serving his community through his store was truly his calling.

In 2009, Evan and I took Poppy to dinner to tell him that he would be getting a new great-grandson, and he was, of course, elated. And during that dinner, he shared many snippets of his life with us as we talked about traveling and marriage and family.

"Evelyn (Evan's grandma) always told me 'we can't afford to go on this trip'," he said, "But I told her 'we can't afford NOT to!'"

In the years since that conversation, every time Evan and I have started to stress about saving for a trip, we think of his grandpa telling us that traveling is one thing we can't afford not to do.

Marriage is hard work, Poppy Harold told us. Over the course of their marriage, he and Grandma Evelyn had difficult times just as any other marriage does, along with the good times. "There were tough years," he said, and laughed, "There was even a hard decade, I think." But he cared for her with so much love at the end of her life, and I will never forget, even as a newcomer into the family at that time, his dedication to her and to his family.


On Monday afternoon, as Connor watched me cry, I sat down with him to tell him that we wouldn't be able to see Poppy Harold anymore because he was in heaven with Jesus.

I expected him to get upset, but his expression was bright-eyed with wonder, so we began talking about how amazing heaven is.

"Someday, we'll get to go to heaven too," I told him.

"And we'll get to see Poppy Harold and Cousin Brody there?" he asked. "Yes," I nodded tearfully, and he began pumping his fists and exclaimed "YAY YAY YAY!" 

Lord, fill me with the faith and excitement of your Kingdom like my son has. 

And Poppy Harold: we know you're up there helping to serve up all of the delicious meat for the heavenly feasts now. We love you, we miss you, and we can't wait to join your party.