March 21, 2014

3:21 2014

A few weeks ago, I went in on a Thursday night for a meeting at the swim school. Our owner had hired a speaker from Australia to come in and do a couple of session with our group and with our leadership team. He had experienced a session with this man during a large swim conference and had been so impressed, he wanted us all to have that same experience. So, we shut the school down for a night and we all gathered around for his presentation.

The first night's session was more generalized information since it was the whole company in attendance, from high school students to the senior managers. I was only able to come to the second half of that meeting, but I could tell the moment I hit the door, that he was doing a good job and had their full attention. And he was very good. He was funny, and energetic, and he hammered a few catch phrases into our lexicon. He exposed some cracks in our happy little family, but he also gave us some tools to work on those flaws. Mostly, it was what you'd expect from these types of things: it made you think about your job and your work environment from an outsider's perspective and see how "the way we do things" isn't necessarily the best.

As he was winding up his presentation, I was happy with the night. I thought it had been worth the hour long commute I'd made in the rain to get there and worth leaving my family to fend for themselves for the night. He was talking about the "Facts of Life" and how if we can just accept these "facts" (i.e. traffic will always be bad at rush hour, your kid is always going to spill the juice, your coworker is always going to be late, etc.) and not spend the time dwelling on our anger, we can be more productive with our thought patterns.

It wasn't until he started to talk about how sometimes we have to adjust what we consider the facts of our lives that I had any inkling that this was going to hit closer to home than I had expected. He started talking about the birth of his daughter, 17 years ago, and how their "facts" had changed in an instant. He talked about how a doctor had rushed into their hospital room and had three "facts" that would forever change their lives.

And I knew.

My eyes started to water, my throat got tight, and in my head, I was lying in that hospital bed with my own shaky doctor delivering me the new facts of my life.

He flashed a picture of his daughter in the NICU on the screen, and that was it. I was sitting there, surrounded by 30 people who knew me to varying degrees, trying my hardest to not break down into sobs. I could feel the weighted stares of coworkers who knew me best, I could feel the sympathy and concern pouring off them. But all I could see was that sweet little face on the screen. I knew that face. That face had Down syndrome. She looked just like my sweet Sam did.

He went on to tell about how amazing his daughter is and all she's accomplished in the last 17 years, while I struggled for control. Looking back, if he had started his story anywhere else than in that hospital room, I would have been fine. Show me pictures of teenagers at Special Olympics or gap toothed kids running on a playground and tell me they have Down syndrome, and I'm all smiles. Start with flashbacks to the hardest moment of my life, and apparently, I'm a weepy mess.

At the end of the night, I wanted to apologize for my tears in the middle of his presentation, so I waited around to say goodnight. I pulled up a picture of Sam on my phone and just held it out as my only explanation:

Here's my boy. My own deliverer of new facts. My entrance fee to this club we are both part of.

Today is World Down Syndrome Day. We started celebrating this during Sam's first year, and people around the world have been celebrating it for the past 9 years. Luke's preschool invited us back again this year, and we sat in the gym, surrounded by kids wearing yellow and blue and talked about Down syndrome. We talked about how there are things that are hard for all of us: tying your shoes, riding a bike without training wheels, learning to sit still; but if we practice hard enough and long enough, we can learn how to do it. Sam has to work that hard on things like walking and talking, but just like them, if he works hard enough and long enough, he'll be able to do it too.

This is my favorite day of all the new things we were given with this diagnosis because like I said last year: "We aren't asking for money. We aren't asking you to walk or run or climb a mountain. We aren't asking you to sign a petition or to call your congressional representative. While those things are helpful in the bigger battle we face in making sure our children and members of the DS community are taken care of and given a voice, that's not what today is about."

World Down Syndrome Day is a day set aside to help us open our eyes a little bit more to the people around us who may be working harder because genetic defects exist. It's a chance for us to show support for those families and people who are affected by this diagnosis and to resolve to learn more so that we can do a better job making space for people with Down syndrome in our world.

This year, for me, it's about sharing a hug with a virtual stranger from the other side of the world because despite all the things that make us different, we are both parents of one of these incredibly joyful, difficult, amazing, life-altering children, and that gives us an entire world in common.

For more resources about Down Syndrome, check out the National Down Syndrome Society.
There have been some excellent videos made recently about Down syndrome. Check out these favorites of mine:
Just Like You:
The 1000 Miles of Luca:
And this new movie, which I haven't watched yet, but I can't wait to carve out the time for:
Friends of Mine:

September 21, 2013

Buddy Walk 2013

Someone's been training for the Buddy Walk!

This will be our second year participating in the Greater Charlotte Down Syndrome Association's Buddy Walk. Last year we had a blast and can't wait to do it again.

If you live close to Charlotte, we would love to see you on Saturday, October 5th at Freedom Park. As I've said time and again, when Sam came into our lives, our perspective on the world changed. Prior to his diagnosis, we went through our lives mostly blind to those with special needs who lived among us. Now, I see people with Down syndrome everywhere we go. From 4th of July parades in Ohio, to kids at work who are learning to swim, to people who walk through the doors at our church. And how magnificently enriched our lives are because of having those blinders taken off. One of the reasons I love the idea of Buddy Walks is because it's simply a gathering of people who have all been touched by Down syndrome. Whether through their immediate family, or a neighborhood kid, or a kid from your school, we all come together at these walks to appreciate this community of people and the good work these associations do.

Down syndrome has brought a lot of things into our lives, but one of the most amazing has been this community of families who are on this journey with us. I don't know where we would be without the doctor recommendations or therapy tips or shoulders to lean on when it gets hard or someone to celebrate with you who really (really) gets how big a deal it is when your child takes their first real bite of solid food.

So we walk. Every year, we will walk. Want to join us? Click here to be taken to our Buddy Walk fundraising site. We love being able to give back and help support our local association, but we'd really love to have you come out and walk with us.

And if you don't live close to Charlotte, head over to the NDSS website and see if their is a Buddy Walk taking place near you.

Thanks for your support of our family and our association!

September 9, 2013

Dear Luke: Year 4

Dear Luke,

When I sit down to right these birthday letters to you, I often feel like I'm crossing a finish line. Like, YAY! We made it through Year Three! It feels like such an accomplishment every year, and I guess in some aspects it is. You are still my stubborn, sweet boy and every year brings it's own challenges. This past year was certainly easier than Year Two, for which I am very grateful. The average of time outs per week has drastically decreased and the amount of time I find myself laughing out loud at your antics has increased in equal measure. 
Your imagination really took off this past year. After Halloween, you became obsessed with ghosts. You weren't scared of them, but you pretended they were all over the house, or hiding behind the couch. You'd point out the imagined ghost and then squeal with glee that we'd "found one!" You were so good at this game that you seriously freaked out a babysitter one night when you convinced her you saw ghosts outside the windows. She got sent home with a little extra hazard pay that night. 
You are constantly coming up with new games to play or new scenarios to put your toys through. I often will find myself working in one room while listening to you line up your cars for a race or launching Curious George into space in another room. There is something so gratifying about getting these glimpses into your brain. While you still struggle with enunciating clearly, you've had multiple verbal growth spurts over this past year and are quite adept at reducing me to tears of laughter with the stuff that comes out of your mouth.
You want to be involved in everything your Dad and I do...from chores around the house, to singing Sam to sleep, to driving the car. You've become quite the backseat driver, pointing out every sign and issuing commands to driver faster or to STOP!!!! when we pass the playground. You want to do everything for yourself, from cooking to buckling your car seat. And while on occasion, it's frustratingly slow going, I love watching you become so independent. I love how you want to rock with Sam and sing him your favorite songs (ABC and Twinkle, twinkle), and how you've learned to wake him up gently from nap times. You weren't much interested in Sam for the first year, but you've slowly gotten more and more excited about playing with him and talking to him. I often find you sitting next to him and trying to show him something or advocating for him. "Mom, Sam would just lube ("love") it if you let him watch Sesame Street. He told me!" 
Just a minute ago, you stumbled upon Sam and I sitting in the back working on walking (He's so close to doing it!) and when Sam took a step or two, you clapped and said, "Wait a second! I need to take a picture of this!" and ran off to grab the ipad.  We need to work on your photography skills, but I love your joy for him.
It's bittersweet these days, as you straddle the line between little and big. You are still interested in George and Micky Mouse, but more and more often, you'll choose to watch Transformers or Sonic cartoons during iPad time. I even found you watching an old episode of Power Rangers yesterday. I just don't know if I'm ready for that level of boy-ness. Cars and trains and Legos I can handle...but I cannot at all relate to the desire to watch Power Rangers or wear Spiderman pajamas.Considering I am the only girl in the house, I may have to just suck it up and accept it as the new norm, at least for a decade or so.
I like this phase of little boy we've been in for a while, and I am sad to see it go. While sending you back to preschool last week didn't phase me at all, seeing you interested in these new toys and shows made me so sad. Because you've always hit each "phase" of baby and toddler-hood so hard, I was always rejoicing when we could close those chapters and move on to new milestones. But this one...this chapter of sweet, innocent boyhood...I'm not quite ready to trade it in for all things Transformers and superheros and things I don't understand.
School started back on your birthday, as well. Because of your September birthday, you will always be the oldest one in your classroom. So, despite turning 4 on your first day of school, you are in the three year old class. But so far, I think it's worked out really well. You love being around other kids and are learning the hard lessons of sharing and playing together. More than anything, I just love that you are getting enough stimulus on those days. All summer long, I was rarely successful at really wearing you out. You and I are so takes me forever to work up the energy/guts to leave the house, while you are raring to go on an adventure at a moment's notice. That combined with our rainy, mosquito-filled backyard, and we spent a lot of time racing your bicycle around the island in the kitchen. 
You just radiant energy all the time. Sometimes, that gets you into a lot of trouble. It certainly gets you a lot of bandaids. But we are learning, you and I, about how to harness and redirect that energy for good. How to turn tantrums into exercise and frustration into cookie baking sessions. While those strategies wouldn't have worked last year, you are growing up and there is joy mixed into the sadness of it all. 

Happy 4th birthday! Don't grow up too fast, sweet boy. There will be plenty of time for that later on.


August 29, 2013

Luke Questions

Scene: Last night, dinner table, all four of us actually sitting down to eat at the same time

Travis: Luke, it's time to pray. Do you want to pray tonight?

Luke: Okay

Travis: Say, "Dear God"

Luke: "Dear Ga"

Travis: "Goddd"

Luke: "....Goddd"

Travis: "Thank you for our food."

Luke: "Thank you for...but what....why do we thank God for our food?"

Travis: "Because God gave us the food."

Luke: "....."

Travis: "......"

Luke: "But....Mommy's not God."

Travis: ".....right, but....ok."

Luke: "Amen."

Travis: "Amen."

End Scene.

August 22, 2013

A Winner!

Thanks for all your entries into the EmbellishCases giveaway! It was a fun experience and I appreciate you giving it a try.

There wasn't anyone around this morning when I clicked the "Pick A Winner" button, so I feel like there was very little fanfare to the whole thing. I don't know what I expected to happen, but I was very nervous and hovered over the button for a good 15 seconds before I clicked. It's not like I had anything on the line, but I was just excited for YOU, I guess.

Anyway, without further ado, the winner of a brand new customized iPhone case is....

#14 Emily Cunningham

Congratulations, Emily! Check your email for directions on how to order your case.

August 15, 2013

Where I've Been (& a Giveaway!)

As you've probably noticed, things have been a little quiet around here lately.  Five months between postings is a bit much, even for me. Well, I have a good reason for it! Basically, what happened was that back in April, I decided to take on ALL THE JOBS.

Okay, that's probably a slight exaggeration. I actually just added another part time job to the mix, but those extra 15 hours a week managed to make my brain explode. I'm still working on cleaning up that mess.

Our church was losing our youth director in May, and while the search committee interviewed a handful of candidates, none were a good fit. With a busy summer schedule looming and no youth director in sight, I was sitting in church one Wednesday night in April when I felt God tap me on the shoulder and tell me to step up. So, I did. And that was that. The last 4 months have been incredibly fun, but also incredibly stressful.

Between juggling my normal schedule of part-time work at the swim school, taking care of the kids and house, and managing Sam's therapy schedule, I was already pretty busy. Adding the youth director gig kind of put me over the edge for a bit. However, I think I finally have a better handle on things now, and while I am still praying that God will provide the right person to take over the youth, I'm not praying quite so desperately as I was earlier this summer.

One of the hardest parts about this summer was that I had to take over the fundraising and execution of a 10 day mission trip to Portland, Maine with the high school youth group. The 2nd week of July saw me loading up two 15-passenger vans with luggage, sleeping bags, and 18 other people as we set off on our adventure. It was a crazy trip, one I am incredibly glad I got to experience.

There was a day towards the beginning of the trip, when I was riding in the NYC subway in the midst of the most ridiculous tour I've ever been on, when I had one of those wanderlust moments that used to define me. One of the only redeeming parts of this terrible tour experience through New York was getting to have conversations with the other dozen or so tourist who were slogging through the streets with us. Most of them were 20-somethings from European countries, here for various reasons. While on the subway that morning, I found myself talking with a young guy from Ireland. Apparently, he had found himself at 25 in the town he had grown up in, working as a PE teacher at his old elementary school, living with his parents, and the last of his single friends had gotten engaged that spring. So, he said, he woke up one day and decided to "shake the pan a little and see what turned up." He quit his job, bought plane tickets, and set off on a journey around the world.

And for a moment, there in the NYC subway with my youth group, literally surrounded by my responsibilities, I was so jealous of this guy I could taste it.

If you've been on this blog journey with me from the beginning, you know just how different my life is today than what I used to envision. Those days when I would pick a camp in different parts of the country to adventure to every summer, or when I was taking internships in Texas to help pay for my year in Guatemala, or even when I was setting off for Montana after giving up on fixing my foot, this life I live today seemed so far away. The kids, the house, and the husband whose job is most definitely not wanderlust-friendly. None of it was even on my radar until that determined Lutheran pastor in Montana decided to pin me down and show me that maybe it was time to put down some roots and gain a partner for the journey.

I've thought a lot about that guy since we returned from our trip. I've examined my jealousy from every angle and wondered what it meant. I knew from the beginning that by marrying a pastor, my days of setting an unlimited radius for job searches would be over. Even though it just has Travis's name on the paycheck, we both share the commitment of this job. And it's not a job that allows for a new city, new state, or new country every few years. It's a calling. A job with roots implied.

And while I struggled with that when I was still having a hard time finding my place in this community, it's not something I think about on a regular basis anymore. With each addition to our family, I've felt those roots grow and strengthen, and I like it. I like being connected here. I like having a history, a tradition, for our little family. While this particular slice of city/suburban living isn't quite my favorite, the availability and quality of the medical community has been an incredible blessing to us since Sam's birth and diagnosis. I can't imagine what it's like to have a child with special needs in a small town, far away from specialists and children's hospitals. Any lingering discontent I had with Charlotte disappeared the moment I realized the couple next to us in the ICU waiting room had to live in a hotel room during the most stressful time of their lives because home was 4 hours away, instead of 15 minutes like ours.

So, is it some sign of festering discontent or regret that I was jealous of this young guy and his adventure? I don't think so. It was probably more a feeling of fierce nostalgia we are all susceptible to from time to time. I'm happy for him. I'm glad he's doing it and I think everyone should at some point. I'm glad I got to have those same kind of adventures back in the day. But I wouldn't trade my family for them. I wouldn't trade the certainty of my now for the what-if's of tomorrow. It's easy to glamorize that lifestyle and to gloss over the rough parts. But if you search hard enough, there are plenty of entries in this very blog of how lonely I was. How I wanted a partner for the adventure and how tired I was ( the ripe old age of 24) of looking for him.

I think we all want to escape our lives and our responsibilities at one point or another. For me, that used to mean hopping on the internet to find a job in Wisconsin or Colorado or Guatemala. These days, it looks a lot more like a kid-free hour in Target or reading a book in a hot bath or even staying up til midnight getting sucked into YouTube channels.

And I'm okay with that.

Now! On to something new for Blessing and Bother!

The day before we left for Maine, my old phone finally gave up the ghost and I had about 3 hours left to replace it before the Verizon store closed. Since I knew I wouldn't have time to learn a new phone before I left and I hated the phone I'd had before, I just bought an iPhone, figuring it would be enough like our iPad that I wouldn't be fumbling with it while we were traveling. Knowing it would need to survive the trip, I immediately went across the street to Target and bought the first case for it I could find on clearance.

Now that the trip is over and life has slowed down, I spent some time searching for a fun case for my phone. Isn't that the whole point of having an iPhone? After being appalled by how much stores charged for the cases, I found myself browsing through Etsy. I stumbled across the Embellish Cases store and fell in love. I literally spent an hour going back and forth on which one I wanted. The prices were so reasonable and you could add a monogram. I eventually landed on the Green and Yellow Herringbone design and added my full monogram. I ordered it in the Tough Case because, well, boy toddlers.
So cute, right??

I got in touch with Misty about running a Giveaway and she graciously agreed! I've had my case for about 2 weeks now and I love it. Misty was really easy to work with and even sent me a proof to approve because I wasn't sure if I would like how the full monogram would look. So far, the case has held up really well and I really like having a tough case that doesn't look like it belongs on a construction site. I've let the boys handle it some and I can definitely report that it's easy to clean peanut butter off of. After living with 3 boys, if nothing else, I know that nothing is indestructible. However, this looks like it will be able to take a beating. And at those prices, it won't kill me if I have to replace it later on. 

To enter the giveaway, fill out the Rafflecopter entry below. Each additional task or like gets you another entry. Check out her website here or her Etsy store* here. One winner will be picked next Thursday and you will be allowed to choose any case (style and cover) from either store with normal customization (aka picking your monogram). Please make sure to leave a valid email address so that I can contact the lucky winner!

*Please note her Etsy store is on vacation until Saturday morning. Check out the Sales button to see her designs.

Leave a comment below letting me know which case you have your eye one! I love mine, but these were all in the running.

**I was given a free case to sample but all thoughts and reviews were my own. I don't need your information for anything and won't keep it once the giveaway is over. I will only pass on the winning entry's email to Misty so that she can contact you about your case. I'm simply trying to support another Momma out there by getting out the word that I liked her product. **

August 11, 2013

Happy 2nd Birthday, Sam!

Dear Sam,

Happy Birthday, my sweet two year old! 2! I can't really believe it. Unfortunately for you, your birthday was on a Sunday this year, which is always a hectic day around here, but made doubly so since VBS kicked off that night. Between church and nap times, the four of us weren't even all in the house and awake at the same time for more than 20 minutes before 9PM. So, it was a quiet birthday celebration with just you, me and a couple of Sesame Street cupcakes from Target while Dad and Luke did their thing at church. Not surprisingly, that was enough for you. Getting to watch a little Sesame Street on Netflix without anybody interrupting you, stuffing your face with sugar, and topping it all off with a (much needed) bath, and I think you felt pretty special. It's not often that you've had much time without Luke this summer, and you really seemed to relish the quiet, one on one time with me. 

While we'll do it up right later this month with a joint party for you and your brother, that Sunday was perfect in it's own right.

This past year, you stayed so much healthier. Getting the tubes put in your ears and getting your aspiration problems diagnosed were key to all that. No overnight stays in the hospital! Cardiology released you from needing EKG's every 3 months. We haven't even been in a cardio clinic since January. In fact, you were doing so well in all areas, that we just skipped your 18 month well check with the pediatrician entirely. So...yeah, sorry about the missing statistics from your baby book. I have no idea how much you weighed for a couple of months or how big your head was. I know, I know. Second child problems.

Right around Christmas, you decided that solid food wasn't so bad. Especially Christmas cookies. And just like that, all those months of feeding therapy paid off. Since then, you and food get along great. You love PB&J's and would eat them for every meal if we offered them. You also went from bottles to a honey bear cup to regular straw sippy cups in the last 8 months. I can't tell you how excited that makes me. It's been so amazing to blaze through these feeding milestones after being stuck in one place for an entire year.
You are such a silly little guy. You delight in making people laugh and have recently perfected your best silly face. You are such a delight. You like to wave to people from the front of the grocery cart. And not just some people....ALL people. In fact, if someone manages to cross our path without acknowledging your greeting, you let them know with a "HEY!" and a loud squeal to make it darn near impossible to ignore you. As you can imagine, the little old ladies eat you up.

You LOVE Seasame Street and will stand right in front of the TV for the entire hour it's on every morning. You don't seem to care a lot about Elmo particularly, but you will crawl like lighting towards the TV when that familiar theme song comes on. Last week, you brought me the remote and then crawled into position in front of the TV, used the sign for "more", and waited patiently until I found an episode on Netflix. Then you clapped and squealed and were content.

Most of the time, you are sweet and loving and joyful, but you've recently learned how to fight back when your brother knocks you over one too many times. You also are not fond of me leaving you places, like the nursery at church, or with a babysitter at home, or even sometimes just in the living room while I go to the bathroom. Every once and a while, that clingyness gets transferred to your dad instead of me, and I have to admit that I don't mind that at all. Some times a girl just needs to use the bathroom without an audience.
 You are still taking your time with walking. It doesn't seem to be a physical problem, as you definitely have the strength and ability to do it. Apparently, you just aren't interested. And that's okay. You are a speed demon crawler and you are cruising really well around the furniture. If you hold onto someone's hands or have a push toy, you are willing to walk for a little bit. If you manage to take a step on your own, as soon as you realize what you've done, you sit down immediately. It's annoyingly frustrating, but you definitely do things on your own time. Next year I will probably be talking about walking like I am about eating this year. It'll come, too.

A few weeks ago, your therapist figured out you'd do just about anything to get your hands on some old Mardi Gras beads, and got you to start standing on your own.  That same day, we also got a glimpse of your "I'm-determined-to-do-this-face." I'm sorry I laughed so hard, but come on, most people just stick their tongue out. Not you, oh no. You go full on grimace. Every time. So funny, sweet boy.
When we named you Samuel two years ago, people always asked if you went by Samuel or Sam. I would always answer back that it didn't matter, just not Sammy. Well, I told everyone but your big brother that. And sure enough, in the last year, Luke has christened you Sammy. Now everyone from your therapists to your babysitters call you Sammy. I resisted a long time, but eventually we all caved. Even yesterday when you got in trouble for pulling all the place mats off the kitchen table (and subsequently dumping cereal everywhere), I yelled out, "No Sammy!!" 
So, I guess it's official if that's what you get called when you are in trouble.
Happy 2nd Birthday, Sammy.

Love you, sweet boy.