Welcome to Holland {a beautiful story}

I don't want to go through Down Syndrome Awareness Month without sharing a story that has beautifully touched us on our journey since Sam was born. The story was read to me after we met our little man, and I've never forgotten it. We've been given the opportunity a number of times in the last 16 months to visit families in the hospital who have just had a child born with Down syndrome, and Pete always reads this story with them. It really is beautiful.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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About a year and a half before Sam was born, I was scrolling through Facebook and came across an adorable photo of a little girl in a tutu and clicked to read the caption. In that moment, I was directed to a beautiful blog. Enjoying the Small Things is written by Kelle Hampton, a mama in Southern Florida who, at the time I began reading, had two daughters. One was about four and the other was two. I was captivated by her photos and everything she was able to capture in them. Beautiful colors, artistic settings, unique angles. An abundance of life was depicted in those photos. One more thing drew me in, though; her younger daughter, Nella, had Down syndrome. 

 Fast forward to the night I met my baby boy. I had been following Kelle's blog for more than a year because of the beauty in her photos and the depth and humor of her words. Clearly, God had directed me to her blog as a way to prepare my heart for what He had in store for me. As I held Samuel in his first few days, I was able to dream of all the incredible things we would do together. I'll admit that before seeing Kelle's blog, it was hard for me to imagine life with a child with special needs. I know that reading her blog opened me to the realization that life can be full and vibrant and adventurous, which is what I needed for the moment the path of our lives changed just a bit. I am so thankful that I stumbled upon her blog. In time, I hope to be an encouragement like she was for parents of children with special needs.

Kelle also released a book just before Sam was born called Bloom. I had considered buying it before his birth, but didn't get a chance, so I ran right out for it while he was staying in the NICU. I read most of it while nursing or rocking my baby, sometimes in the middle of the night. I cried and I laughed, and sometimes I had to put it down because my heart just wasn't ready to read more. But in the end, it was very good for my start in the community of Down syndrome. It was like having another mama nearby, gently telling me her story. 

Disclosure: I was not compensated in any way for the content in the post. All opinions are my own.

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My Little Man Sam

When people ask how my life has changed since we met our little Samuel 16 months ago, I tend to get a bit teary. I don't know how exactly to put words to the emotions I have for what we have experienced. There have certainly been ups and downs and a few unknowns. I wrote about some of the emotions tied to that in a post about learning to trust when Sam was just a couple months old. Many more months have passed, and we are still learning to trust every single day, but things feel smoother now. We're more comfortable with the unkowns, and I have no doubt that Samuel is the one teaching us how to trust through those moments.

We don't dismiss the things that make our Samuel a unique, beautiful little boy. He has Down syndrome. That is simply a part of who he is. But it's not all he is, and that's what we focus on each and every day. There was a time when I wondered if I would look into his eyes and not think, "My son has Down syndrome." I don't know when I reached that time, but it has happened. I now look into his big, bright, blue eyes and see so much potential. I see his joy. I see a boy who wants to learn and grow and experience the world as he is meant to experience it.

Who says we're all supposed to experience the world a specific way, anyway? We're each so incredibly unique. I'm excited to see how Sam gets to see the world. I want him to teach me how he experiences each moment. He's already been doing that in so many ways. I'm learning to slow down, to not be so set on a standard timeline of achievement, and to enjoy the process of reaching goals. And then, when the goal is accomplished, to really celebrate. To share with everyone that we've accomplished something spectacular. Something that most of the world may see as ordinary, but to us, through the eyes of my Samuel, it is something truly amazing.

 

And who wouldn't want to experience the world that way? I want to see beauty in simple things. I want to celebrate little moments rather than only making a big deal over the big stuff.

Recently, we've had a lot to celebrate. A few weeks ago, Sam started sitting on his own. He is such a strong boy, but his tummy muscles needed a little more practice with staying up. He gets so excited to sit up and play with toys now, especially when Ella is playing along with him. He is also waving with both hands and clapping. He loves to stand with a little assistance and is getting really good at holding onto objects to stand on his own. He works very hard at physical therapy each week and is doing so well with occupational therapy (his fine motor skills) that he only has to go every few weeks now instead of every week. Soon we'll begin speech therapy, too.

Can I tell you the REALLY exciting thing?! He has said his first word! The greatest thing is what the actual word is. ELLA. Yes, Ella! The first time we heard it, she had just left the room where the two of them were playing. He yelled after her, which sounded like her name, but we weren't sure until he said it a couple more times. Now he says it quite often. Earlier today, Pete got home with Ella after preschool and I said to Sam, "Ella's home!" Right away, he yelled, "ELLA!" It's adorable. I'm still trying to catch it on video. When I do, I'll be sure to post it. 

 We've been blessed in a way we never imagined. That's exactly why we are really celebrating Down Syndrome Awareness this month. If you'd like to learn more about Down syndrome, check out the National Down Syndrome Society resource page. Also, I'll soon be posting links to other blogs and FAQ pages with lots of information on Down syndrome.


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I am currently working on a couple really big projects that I can't wait to share with all of you! They both make me so giddy that I wish I could just tell you everything right now, but I don't feel I would do them justice if I did that. One will be revealed very soon, so check back! The other will take a couple months, but it's going to be BIG.

And no, for all you who are just so curious, neither project includes anything having to do with a baby. (That comment is mostly for you, Mom.)

I hope you're enjoying the fall as much as we are!

Sammy's Superheroes!

The day finally arrived. Even though I was super tired after two days of wedding catering (500 cupcakes & two multi-tier cakes) and a quick recognition of my own birthday, I woke up before my alarm. The capes were ironed, shirts set out, and snacks packed. We had been looking forward to the Step Up for Down Syndrome Walk for many weeks. I wanted to soak in every detail.

While Sam was taking his morning nap, I surprised Ella with her "Super Ella" costume, as she prefers to call it. First I gave her the gold sparkly shoes (from a thrift store in Wisconsin), then the tutu (made by mama and hidden in a bag until the big reveal), and finally the shirt and cape. Once the outfit was put on and paired with tights, Super Ella ran around the house, hands in the air, alternating between ballerina twirls and leaps off of furniture.

Next, Sam was dressed in his tiny onsie and cape, matching tights, and red socks. The boy was born to fly!

Daddy next. Daddy's costume was one part his everyday work clothes and one part Superman. I made a shirt for him to match Ella & Sam and attached a long cape to hang out his shirt. The glasses came from Uncle Jake. Personally, I think my man made a pretty hot superhero.

I had no idea what to do for my own costume. I'm not down to my pre-Sammy weight, so things I had on hand didn't fit. I ended up making a dress from a tank and blue fabric, putting on a cardigan, and tossing a cape over it all. It did the trick just fine.

Before heading to Canal Park to meet up with the rest of Sammy's Superheroes, we decorated the wagon with signs and ribbon, attached balloons to Sammy's stroller, and had a little chalk party in the front yard to fill the remaining time. Then we were off!

We arrived at the event filled with excitement. Music was pumping, bouncy houses were jumping, and kids were running everywhere!

Ella loves mascots. Look at Champ, my alma mater's Bulldog, sporting the Step Up t-shirt. So proud.

Teams had signs and matching t-shirts, but our capes seemed to set us apart from the rest of the crowd...until the Horns arrived.

Our dear friends Eli, Krista, and Caleb came in style.

The boys compared superhero notes.

And then the walk began! Daddy & Sammy led the way.

Ella helped Papa Scott with Luther.

And with Gracie.

And eventually Gracie took over Malena & Maira's stroller.

Ella's friend Ava got to be a part of our team! She was a little shy at this moment, but I think she had fun riding in her wagon with little brother, Oakley.

 

 Ella shared her wagon with cousin Malena for a little while.

Ang's cousin Megan had a turn to cuddle Sammy.

Look at all the people! We walked from the DECC to the Canal, along Lake Superior, and back. For most the walk, the weather was warmish and sunny.

In Canal Park we stopped to play a take a few pictures.

Here's part of our team. Not everyone made it into the picture. We had such a great time with everyone!

Daddy with his little superhero.

And mama with her superhero.

And two crazy superheroes together. (Pete may look short here, but he's 6'1". Eli is just that tall.)

My friends, we had an amazing day. I was overwhelmed with good emotions as we stood surrounded by crowds of people who are living with and loving on beautiful people with Down syndrome. I'm learning everyday that one extra special chromosome makes our world brighter.

We are so very, very thankful to all of you who supported Sammy's Superheroes. We never imagined we would reach $1,742. AMAZING!

Thank you to Eli & Krista for some of the great photos above!

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Just because he's so darn cute, here's one more photo of our little superhero.

What a Sale!

I am so very humbled by what happened over the last two days during our sale for Sammy's Superheroes. When I was getting ready for the big event, I kept wondering how much money we could possibly make and got pretty excited about the thought of bringing in $150. I've never had a yard sale, so I really didn't know what to expect. I vaguely remembered someone mentioning they made $100 at a sale, so even the thought of $150 was stretching it a little.

Oh, friends, we went so far beyond that! I get teary just thinking about all the people who came through the yard, asked questions about the walk, met little Sammy, and so kindly told us we could "keep the change" after their purchases. With such generosity, we raised an incredible $637 for Sammy's Superheroes!!

Seriously, I cannot thank everyone enough for all of the support and help and kind words and prayers over the last couple days. It may have sounded like we had some rough interactions at the beginning of the sale on Friday morning, but we really didn't. They were just funny and made the experience that much more memorable.

So was I ready for those early birds yesterday? Oh yes. You should have seen me. I dropped Ella off with Mama Bex and the girls at 7am after swinging through the drive-thru at McD's for an iced coffee. I was in desperate need of a caffeine kick. Sammy and I rushed home and I got right to work pulling the boxes into the yard and emptying them on the tables. I had been so busy trying to beat the rush on Friday morning that I didn't get to decorate any of the tables, which made me feel like something was missing. That just isn't my style. So after the little ones were sleeping, I printed table signs, hung paper lanterns in the tree, and dug out a coat rack to hang nicer items. All of this was set out and organized by 8:15am. So what did I do when the first person walked into the yard just a moment later? I smiled, said good morning, and sat to cuddle my babe at the check out table. It was practically perfect.

I had two very lovely surprises throughout the day. The first was when Gillian, John, and little Ruby arrived. They live hours away, and I had no idea they were in town. We got to chat for a good while, which was so good for my heart. They're just an awesome family. Then Beth and Brian strolled into the yard! No joke, this was like a birthday present. B&B are really close friends of ours and we just don't get to see them often enough since they moved to the Cities. They ended up staying through the rest of the sale, had a picnic with us, watched a movie, and even stayed over night! Yes, they are the kind of friends who can drop by and do such a thing. Bless their hearts for excusing the state of my house. Let me tell you, my house is in great need of attention. Great need. Oh, and right when I was starting to clean things up after the sale, dear Amy stopped by and helped me box everything and take down the tables. Can you see why I have felt so blessed after these couple days? Generosity and love on so many levels.

Brian & Beth

Today we're recovering. I explained to Ella that today is a "chill day" meaning we aren't leaving the house and it's okay to watch movies and be lazy. We've all napped, though mine was brief since I wanted to soak in the alone time while the little ones slept. Ella just woke after four hours in bed. Four hours. We all needed that after she refused to nap the last two days. And now Sammy is awake. I'll go nurse him and cuddle him and maybe watch a girly, princessy movie with my Ella.

So, we've reached our original goal of $1000! Yay!! Now what? Well, to be honest, I feel like I should confess something. When I first set up our team and had to choose a goal amount, I entered $2000. The next day, though, I got back on and changed it to $1000 thinking the first amount was just way too high. Then I started thinking $1000 was too high, but I kept it. We still have an entire month to raise money before the Step Up walk on September 30. I'm really feeling like that first amount was what we were supposed to go after as a team before I got scared. Can we get $800 more in the next few weeks? I say we go for it! If you'd like to be a part of the team, click on Sammy's Superheroes on the sidebar next to this post. We'd love to see as many people a part of Sammy's team as possible!

Have any plans for Labor Day? Pete will be on call, so maybe we'll do a picnic and go to the park. Something simple. Enjoy the holiday!

Photo Friday: Sammy's Sale

Whoa. People were not joking when they said yard sales are a lot of work. I'm ready for bed and it's only 7:03. Could it be from the 3 short hours of sleep I got last night? I'm going to go ahead and say yes on that one. I'm not complaining though. Not a bit. I loved getting ready for the sale. I adore organizing and sorting and setting things up. I've wanted to try having a yard sale pretty much my entire life. And today was my day.

Early this morning

Do you want to know what I do NOT adore, though? Snippy garage salers who walk into my yard an hour before the sale begins and loudly complain, "This is all there is?" Um, ma'am, I just nursed my baby, am dressing my three year-old for preschool, frosted 30 dozen cupcakes, and got three whole hours of sleep. And now you're coming into MY yard and giving me sass? You can just turn right around and be excused. But of course, all I did was gently mention that the sale was scheduled to begin at 9 and items were still being set out.

Sammy's table

I knew it would happen. I had been warned. But what was I supposed to do? I had no other time to set everything out before the yard was bombarded with fanny-pack-wearing, quarter-shuffling salers. And holy moly, do they take their shopping seriously. I could not work fast enough for some of them. I'm quite sure they had a carefully mapped out plan of attack on every sale within a 30 mile radius and my snail-speed figuring of prices was slowing their pace.

Maira checking out the sale

And then promptly at 9am, when the sale was actually scheduled to begin, everything slowed. The rest of the day was completely enjoyable. We had a steady flow of shoppers who smiled and chatted and enjoyed the process of searching for treasures. Sammy cooed and smiled as guests paid for their goodies and left generous donations in Sammy's glass jar. And the weather was perfect. My mom and I spent the entire duration of the sale sitting in the yard, sliding our chairs every 30 minutes to stay in the shade. I'm actually looking forward to doing it again tomorrow. After the morning rush.

Nana Scott & Sammy

 Tomorrow I'll be ready for them. I'll wake at the crack of dawn to set up my tables. I'll set out my cupcakes and sit in my chair ready for their arrival. Then I'll look those crazy serious salers in the eyes and know I have them beat. 'Cause I will. I'm a mama, and mama's can do everything.

Sometimes.

neighbors had a sale, too. these were my treasures.

Have a lovely weekend.