Sunday, October 28, 2012

Guts

We had a very windy weekend here, getting whipped with the outer-most bands of Hurricane Sandy as she swirled past North Carolina. No rain, just lots and lots of wind. The temperature was still good, so we camped out on the back porch and carved out our pumpkins.

I really should say that Nate and I started to carve out our pumpkins. Every year we try to get the boys excited about it. This year, we got everyone to at least tell us what kinds of eyes, noses and mouths they wanted on their jack-o-lanterns before running away the first time.

The boys don't like to touch the pumpkin guts. They're cold and squishy and stringy. I thought for a while that perhaps it was some kind of preemie sensory issue, but when Matt announced that he didn't like putting his hand in the pumpkin guts either, I realized it was just a Slavik kid-ism.

Nate was nice enough to scrape the inside of the pumpkins to loosen the strings. The boys reluctantly pulled a few spoonfuls of guts from their pumpkins. I have many photos of grossed out faces. Once they had cleaned out their obligatory pumpkin, they were gone again.

Nate made sure that everyone had completed their jack-o-lanterns before he started on his. He had the largest pumpkin to carve. Big pumpkins means lots of pumpkin guts. As the boys left their pumpkin gut-free play in the backyard to get some snacks on the porch, Nate took his opportunity to have a little fun.



As you can imagine, this scene ended in a lot of high pitch screams. Halloween is truly nearly upon us.

As Hurricane Sandy approaches the mid-Atlantic and beyond, we're thinking positive thoughts for all of our family and friends in her path. Please be safe!

Thursday, October 25, 2012

The walk between second and third

This change in Will has been amazing to watch. Six months ago, he didn't want to walk. He didn't try hard to move his legs - we had to make him do it. Physical therapy was filled with tears and low tone. But something has awakened in Will. I wish I knew what changed in him - but he has this desire to MOVE. You stand him up and put his feet on the floor, and he just goes. To the point of exhaustion sometimes... both his own and the person holding him up! Last weekend, we tried another method for getting Will to tolerate his Miracle League baseball game. Nate took Will out of the wheelchair, and stood with him at his position as Grasshopper's short stop. Will did not cry. Rather, he laughed and marched back and forth between second and third base, occasionally dropping to the turf to field an infield hit.




Nate's back held out for most of the game - thankfully it is just two innings! There was no easy way to have Will bat from a standing position, so Nate and Joe got him set up in his wheelchair to take his turn at the tee. And just in case you thought that Will miraculously overnight started enjoying baseball, this was his typical face while swinging his Louisville Slugger.


Hey. You can't win them all. From Will's perspective, when you're playing baseball, walking is fun and sitting is not. Maybe someday he might love all aspects of the game... maybe the roar of the crowd, the sound of the announcer, and periods of inactivity won't bother him. Maybe. I'm just going to marvel in the change and appreciate that Will will do things on his time.

Monday, October 22, 2012

Sweet boy, tough day


Today was Luke and Will's first day of being back at school after 3 weeks of tracking out (basically taking a break during the year).  I expected some drama.  Luke has been trying out a camp a week for the past 3 weeks - learning about the wonders of the great outdoors, trying out ice skating, and most recently, he spent a week at a cooking camp.  He loved it.

I picked him up from school today and he was upset about something.  He didn't want to talk about it immediately.  How do kids so young learn to bottle things up?  I pressed a little further.  He told me that he didn't want to go back to school tomorrow.  He wanted to go back to Lil' Chef (the cooking camp).

Trying not to push too hard but still trying to get some details on the day, I asked Luke if he had a tough day with behavior.  He said he did not (and showed me the happy face on his daily sheet).  I asked him if he was tired or hungry.  He said he was not (and proceeded to show me that the only thing remaining in his lunchbox was a couple of carrots because I gave him too many with his lunch).

Then I asked if someone at school made him sad.  I hoped the answer was no... because with all the news coverage of school bullying, this is something I am terrified of as a parent.

Unfortunately, he said yes.  There was a person in his after school program who was calling him "little."  And then he started to cry.  He doesn't want to be little, he wants to be big.  As much as I tried to reason with him and tell him he needs to eat more to grow, the tears coming from his eyes told me that the reasons didn't matter.  He wouldn't be able to understand that he was born early, he started out little, and has a lot of growing to do to make that up.

My heart broke.  My eyes got teary.  I didn't know what to say.  As parents, our first desire is to protect our kids... to keep them from pain and from hurt.  As much as I know that some of these situations are inevitable and real, it doesn't mean that I want any of my kids to go through them. 

My head ran through a range of thoughts... the first of which was to call the school.  And say what?  Someone hurt Luke's feelings by calling him little?  Is that bullying?  Teasing?  Is he blowing something completely out of proportion?  Is there an answer?  All I knew was that someone said something and he was sad... so sad... like I've never seen him before.

Then I went all irrational.  I wanted to take him out of school, send him to private or parochial school where they don't let you make people feel this way.  But I know... kids from every different type of school have some story about a time when they felt ashamed or belittle or ostracized.

Then I went even more irrational... perhaps we should teach him snappy come backs?  Something mean to say back to his antagonist?

"Hey Luke, you're little!"
"Hey Antagonist, you're ugly!"

Obviously I did not teach this to Luke... and obviously having these thoughts were not my crowning moment as a mom trying to teach a son to be independent, strong, sweet, and empathetic.

Luke went out to dinner with Oma.  A good change of pace for him, and good one on one time.  It also gave me and Nate some time to regroup on strategy.  Thankfully he's less emotional than I am.

At bed time, Nate and Luke had a bit of quiet discussion on the day's events.  Rather than teach Luke how to punch someone in the eye when they insulted him, Nate advised Luke to walk away.  He reminded him that if someone was making him sad, he didn't need to sit there and take it.  He always has the right to get out of a situation that makes him upset.

I hope that some of these techniques sunk in.  As I listened from the door, I could still hear Luke crying about not wanting to go back to school.  Shortly thereafter, Nate switched off the light and Luke was quiet.

Within moments, though, I could hear him whimpering.  And I did the only thing I knew might make him feel better.  I crawled into bed and hugged him as tight as I could, stroked his hair and told him that we loved him and that he wasn't alone.  I could not stop my tears from flowing as I imagined to hurt that his heart was feeling, but in an instant his eyes were closed and his breathing was regular.

And like that, the first day of track in was over.  Three boys were sleeping.  And two parents are still standing here, scratching their heads... wondering if they handled this situation the right way, wondering if Luke will gain some confidence to walk away, and hoping that he is happier tomorrow.

Friday, October 19, 2012

For the love of special needs swings

There aren't a lot of places around with swings made especially for children with special needs. We have found a couple of places near our house that have them, though one park is a 45 minute drive and the other park - while closer - has swings that are still much too big for Will. So imagine our surprise this weekend when the playground at Kiptopeke had a special needs swing... AND it was sized for a kid between the ages of 2 and 5! While Luke and Matt bounced across moving bridges and through tunnels, Will flew through the air like Superman. With a huge smile on his face, though, and not Superman's typical brooding pursed lip.





These unexpected moments... finding a special needs swing in a random playground, NOT having done hours of research or driving to seek it out... make me stop and think. Maybe, just maybe... the world is starting to realize that all kids deserve the opportunity to have fun.

Wednesday, October 17, 2012

Can I get s'more?

One of the best parts of a cabin weekend is the time spent around a campfire. The weather this past weekend was warm during the day but cool at night. And nothing is better than a campfire, a sweatshirt, a nip in the air, and a bag of Jet Puffed marshmallows. Due to proximity to bed time, we typically avoid chocolate with the boys s'mores. The toasted marshmallows and grahams crackers make a nice "sammich" (as Matt refers to s'mores), without the caffeine of a Hershey bar.

Luke and Matt loved their time around the fire, experimenting with their preferred level of marshmallow done-ness. Will may have loved his time even more - snuggling into Nate's sweatshirt and falling asleep to the glow of the campfire.






I love the glow of faces around campfires. Everyone always ends up looking peaceful and at ease. If I had more time, I'd learn how to adjust the aperture speed on my camera so that I can more accurately capture the color of the glow without the 'out of focusness' that the pictures above have. I just don't want to use the flash and lose the warmth. Plus flash pictures taken outside at night always make people look like deer in headlights.

Tuesday, October 16, 2012

I like long walks down 75 steps to the beach at sunset

We spent the weekend at Kiptopeke State Park in Virginia with my dad, stepmom, brother and his lovely bride... for those counting, this is our second Virginia State Park this fall :)  We've now visited 6 out of 35 parks, with one more to go this year!

Kiptopeke is located on the eastern shore of Virginia.  Back before Virginia built the 20-mile long Chesapeake Bay Bridge Tunnel, Kiptopeke used to be where the ferry landed on the eastern shore.  I think it is a great reuse of the space.  The World War II vintage cement ships (which had originally been used as a breakwater for the ferry) are still there, and utilized mostly by the amazing number of migratory birds that fly through the area every spring and fall.

We spent the weekend hiking, playing games, cooking food and enjoying each other's company and the fabulous weather.  Because we were so close to the Chesapeake Bay, the terrain was very flat and easy to push a wheelchair over.  We took a hike to the beach to view sunset on Saturday night... from the map it appeared as though there was a perfect (flat) boardwalk from which to view.  Except I misread the map.  And there were about 75 steps to go down from our flat hiking path to the perfect viewing boardwalk.

Perfect.  Not.

Thankfully we're resourceful and strong, and between my dad and Nate, they carefully carried Will's wheelchair to the end of the boardwalk with about 15 minutes to spare before the sun set over those cement ships.  Will loved his bouncy ride down the steps. 

Perfect.




Normally I am the one behind the camera.  There aren't a lot of photos of me on the blog or in the scrapbooks that I create.  Sometimes this annoys Nate, so for a while before the sunset, he grabbed the camera and snapped some shots of me and Will, Luke and Matt.  I'm grateful for this.


And finally, the crowning moment was upon us.  Sunset.  Which means absolutely nothing to my kids.  Or some in my party.  But was lovely nonetheless. 


When the sun sunk down below the surface of the Bay, it started to get dark very quickly.  We hightailed it up those 75 steps (a little tougher for us to get back up with Will's wheelchair than it was to get down) and headed back to the lodge for dinner, s'mores and sleep.

Sunday, October 14, 2012

You better work

I think Matthew has been watching a little too much of America's Next Top Model.  All these poses in a matter of seconds...  I think he's even smizing.

Wednesday, October 10, 2012

Punkins

Our fall is jam packed.  I am not sure how this always ends up happening, but the minute the calendar moves from August to September, the weeks get busier and time starts flying by faster than it usually does.

I love fall, and one of the things I really like it taking the kids to the pumpkin patch (Hill Ridge Farms in Youngsville).  Everyone has a lot of fun in their corn crib, huge slide, hay jumps, train ride, duck races, and hay ride out to the pumpkin patch.  And of course, I love taking pictures of the kids there... it might be 85 degrees outside, but gosh darn it... ITS FALL!

We hit Hill Ridge this past weekend because between the end of September and Halloween, it was the only time we could go.  I thought it would be empty this early in the pumpkin season... WRONG!  Madhouse.  But hey, so's our house.  We took 2 sets of friends to help throw elbows in the crowds.  Just kidding.

As I am sitting here flipping through the pictures, the most remarkable thing is how much older all of the boys look this year... October 2011 just doesn't seem that long ago.  But in October 2012, my little misters look a whole lot bigger.

See photographic evidence below:

2011: Luke laughing at duck races (not caring about winning or losing)


2012: Luke losing his race at duck races


2011: Will and Oma dancing to the music
 

2012: Will and Aunt Jenn enjoying a special moment together


2011: Matthew a little nervous about the immensity of the hay pile


2012: Matthew showing the hay pile who's boss


2011: Friendships emerging (at the top of the hay pile)
 

2012: Competition starting... already?! (ready for their first solo trip down the huge slide)
 
 
2011: Babies then...
 

2012: Big boys now...
 
 
 
Where does the time go?  Thank goodness for photos!  Helps to remember all the growing everyone has done in the past year.

Tuesday, October 9, 2012

Otis' quiet place

Our house is loud.  There are often kids running around, and many wheeled pieces of equipment that might run over your feet (or paws) if you aren't careful.  Though there are times that Otis is right in the middle of the excitement, there are other times when he acts his age and excuses himself away from the madness.  Usually I find him in his bed in our room, or perched at the top of the steps with a birdseye view of the trouble he hopes he isn't getting blamed for. 

Between the 5 human members of our family, 4 of us have been really sick with "the crud" over the past week.  Fevers, cough, chills... it hasn't been fun.  So take that normal chaos and add 4 people who don't really feel well... it is enough to make even the most mild-mannered pooch want to run away.  To make matters worse, Nate sprained his ankle this past weekend and has been hobbling around on crutches.  Its like another set of feet to look out for when you're about 2 feet tall.

Thankfully Otis didn't run away.  But he did find his Zen spot in the house.  Not any of the normal places.  I've been finding him tucked away in our closet, beneath the dry cleaning, next to the hamper, and the stinky shoes.  Sleeping just as peacefully as he could.  Away from the chaos and the sickness... I think he might be on to something.


I might have to stash some cookies and a couple of Food Network magazines in the closet and share Otis' hiding spot with him.

Thursday, October 4, 2012

A walk with my father

A lot of people tell you a lot of things when you have a premature baby with a brain hemorrhage.  Some good, some bad.  They give you terrible statistics and then tell you to have hope.  They tell you that all you can do is try your best, and the rest is out of your hands.   They tell you to let go the "perfect child" dream and be your child's parent, physical therapist, nutritionist, and sideline cheerleader all at the same time.

It gets complicated and confusing.  We started to feel guilty for sitting on the couch snuggling with Will, thinking that we should be stretching him or working on core strength instead.  It took us a while to see the forest through the trees.  At some point a few years ago, we realized that trying to be all these things and do all these things was exhausting and not allowing us to be the happy parents we desperately wanted to be.

While we still do some support work with Will's therapies, we opted to put the meat of his therapies into the hands of capable and caring professionals.  We get to stand on the sidelines, cheering as loudly as possible, and just be amazed by our son.  It has made things a lot less complicated.  Parenting, snuggling, loving... all just seems less guilt-riddled since we know his therapy needs are being met.

The video I posted last week of Will walking in his gait trainer was not a one time thing.  Will now spends 30 minutes a day in his gait trainer, motoring around.  We can see his tolerance and enjoyment levels continuing to rise.  Such a stark contrast from even a few months ago!

We were at Kure Beach this past weekend, the weather was nice and the ocean still warm.  Will typically isn't the biggest fan of the beach.  He enjoys being splashed around with in the waves, but that usually lasts for just a short time, and then he's annoying with sitting in the sand.

For a while Will sat with Nate in the sand while Luke, Oma and Opa splashed in the waves and Matt sat sullenly on his beach towel.


He seemed to be paying attention to the sounds of the beach and Luke's delighted squeals.  He wanted to move.  Nate balanced Will on his knee in the water so Will could feel the water with his feet.  Will started to kick.


That wasn't enough.  Will wanted to walk.  Typically when Will walks, he wears DAFO braced on his feet and ankles.  This stops his feet from pronating (pushing out and away from his body).  We didn't bring those to the beach with us.  He's never walked on the beach before now, I guess we didn't think this would be the day he started.

But away they went.  Nate holding Will, Will marching forward.  Splashing through the water.  Both just laughing, laughing.  Sharing Will's first walk on the beach together. 




The proudest Slaviks on the beach.  Will was prancing, big steps, huge smile.  Nate was just amazed of the will and tenacity of this kid!  I know Will should have been wearing his DAFOs.  I know his feet are pronated when he walked on the sand, and look unnaturally splayed to the outside.

In this moment, no one cared.

Back and forth, back and forth, waves in, waves out.  They kept walking.  Nate's back and arms must have been screaming, but they kept going until Will's legs were jelly from so much walking.  So much effort and pride! 

As they made their way back up the beach, to perch and rest on the towel from which they left, Luke came over to congratulate Will.  He realized that Will was working very hard and he wanted to be a part of it.  When you find out you're having twins, these are the moments that you dream of.


We are all so proud of Will!  And I am so grateful to have a wonderful, loving, supportive, strong, dedicated partner by my side (and as the willing subject of so many of my photographs).

Monday, October 1, 2012

Fort Fisher to Southport

Despite having moved to North Carolina more than 7 years ago, we're still Northerners at heart.  We drink unsweet tea.  We don't say "might could" or "used to could."  And when it comes to the heat of the summer, we don't go to the beach.  That isn't to say that we don't enjoy living close to the beach.  We just choose to visit it outside of the summer months.  Its friggin' hot out there. 

This past weekend, we hopped in the car with Oma and Opa and drove down the coast, to stay at a military recreation area near Wilmington.  We spent our first morning there hopping a ferry from Fort Fisher to Southport NC, just in time for their Wooden Boat Festival.

The ferry itself was a big hit.  Lots of wind.  Lots of birds (that stayed conveniently just off the back of the boat - I was glad to not be seagull bombed).  Not a lot of sun.  Not a lot of wake.





We disembarked in Southport, a city built in the late 1700s as North Carolina's original port.  Eventually the state's main port was moved up the Cape Fear River to the city of Wilmington.  But Southport still holds onto its history proudly.  We were greeted by the mayor immediately upon entering town.


Okay, so I don't actually know if this guy is the mayor of town.  What I do know is that he had a pretty awesome pirate costume on, spoke the language and he was drinking out of a leather mug.  I call that a pretty good welcome.

We had a good lunch while we were there, played "who's hand is on top" while we waited for our check, and building our own wooden boat - courtesy of the local Lowe's Home Improvement!  We spent a good bit of time walking around the historic city and seeing some truly beautiful wooden boats.






Despite the fact that we're in October, it still doesn't feel like fall here.  But I was thankful that for our trip to the beach and our day in Southport, the temperature didn't break 80 degrees.  It certainly isn't the sweater and fall foliage I was accustom to in Upstate NY... but its certainly better than 100 degrees and 100% humidity.  I can't don't want to imagine what the mayor of town would have smelled like if the Wooden Boat Festival was held in early August instead of late September.  Ick.