special needs blog, summer getaway

Campers Have S’more Fun!

Last week was filled with camping adventures. Our first stop was in Suches, Georgia where we stayed in a Getaway Cabin out in the middle of the forest. The modernized and revamped boxcar had huge windows, so it felt like we were sleeping under the stars. We hiked to Sea Creek Falls, made s’mores, and created some fun forever memories.

The hike to Sea Creek Falls was really muddy. Hopey kept getting her shoes stuck in the mud, and we’d have to get on our knees to dig them out. But she was a trooper. She trudged along, sloshing in mud that sucked her shoes right off her feet, until we made it to the waterfall. Charlie, who wasn’t as fond of the mud, ended up being piggy-backed most of the way. When you’re a little guy, I guess that’s one of the benefits.

Losing shoes and ending up with kids who were muddy from head to toe led to a gorgeous hidden waterfall surrounded by smooth flat rocks in all sorts of colors. The water at the base of the falls, for the most part, was either ankle or knee deep. It was ice cold and perfect for wading. Surrounded by trees and vegetation, the area was completely shaded, so we spent a couple of hours there. Charlie must’ve inspected one-hundred stones. He picked them up, rubbed them with his fingers, and then threw them back into the water to go searching for another. Hopey sat on a rock and let the moving water rush over her feet and legs. This hike is a must for all travelers who stay in the Suches area.

The second part of our week was spent camping in a 1960’s camper named Winnie Jane Bago, and boy howdy, she was fun. We were stuffed inside that camper like sardines, bulging at the seams even, but we had a blast. With no television or internet, our time was spent in utter togetherness.

Winnie Jane sits on a gorgeous farm in Grandview, TN. When visiting, every guest gets the opportunity to meet Herbert, the 180 lb. pig, Poncho and Lefty, the two rescued donkeys, and a chicken who will follow you wherever you go, nipping at your toes. Two swings hang from the tall branches of a good old-fashioned shade tree … and a picnic table welcomes you to have breakfast outside in the cool shade. The paths are wide and the hills are gentle. It’s a perfect spot for taking long walks.

While there, we took a hike to Piney Falls. It takes about ten minutes to get to the trailhead from the camper. It’s a beautiful area, and the hike is worth the time.

Hope and Charlie made friends with all of the animals during our stay at Winnie Jane Bago, and they loved how our beds were connected in the camper. It was definitely like a slumber party, because they giggled all night long. But sleep is overrated, right? haha.

Is it easy to camp and hike with two special needs kiddos? I get asked that A LOT! No, it’s never easy. When Hopey decides she’s had enough hiking, she plops herself on the ground and refuses to budge. To attempt to nudge her along would be futile, so we have to sit down and wait her out. While walking a mile might take the average person twenty minutes, it can take Hopey an hour. Sometimes longer. Patience, indeed, is a virtue.

And Charlie. Until you’ve seen him stomp his foot to declare his general unhappiness, you haven’t seen the cutest thing in the whole world. He actually thinks he’s taking a stand with such angry fervor, while in actuality he’s just this little fella kicking his foot around. You know how a horse paws the ground? That’s what it looks like when Charlie stomps his foot. He does it OFTEN when hiking. And when you ignore it, he lies down on the ground and creates a puddle of tears. Hence the piggy back rides.

Every time Charlie manages to shimmy up a rock … or when Hopey balances on a log to cross a creek, I’m quickly reminded of how the effort is worth it. When they dig their nails into the bark of a tree, dip their toes into a rushing stream, pick a flower, throw a rock, gather sticks, or get up off the ground and choose to walk a few more steps even when their legs feel worn to a frazzle, they are growing.

And as I participate, I’m growing too. Patience is a learned skill. Appreciating fifteen years of tiny baby steps requires intention. And hoping for the best … continuing to have faith that Hope and Charlie will find a way to effectively communicate and will eventually be able to utilize self care … that’s the most challenging part of the growth.

God. He’s ironic in the most magnificent way. Indeed, he uses the weak to lead/teach the strong.

“My power is made perfect in weakness” (2 Cor. 12:9)

You can book a Getaway cabin here: https://getaway.house

You can book a place to stay on Lemon Lane Farm here: https://www.lemonlanefarm.com

special needs blog, special needs mom blog

Reckless Love

I think it’s safe to say that most people enjoy the beach. What’s not to love about a vast body of water surrounded by white sandy beaches? But for Hope and Charlie, the beach is much more. It would be easy to label my two munchkins. The world considers both of them to be “severely” disabled, so perhaps the way they experience the beach is because they lack decorum and social sensibility. But maybe … just maybe … they’re onto something the rest of us are missing.

As soon as their toes hit the sand, for instance, their instinct is to drop into it. They both dig their arms down into the warm grains and lie on their bellies. They don’t worry about whether sand gets into their clothes, on their faces, or in their hair. They’re not concerned about what others on the beach might think of them. They just drop down and feel it. They experience it. Several years ago, I decided I’d allow myself the freedom to lie down with them and to do what they do, and I actually enjoy the way the warm sand feels on my body. We end up taking home as much sand as we leave behind, and while I spend months vacuuming it out of my car, it’s worth it.

When the kiddos finally make their way down to the ocean, both of them either lay their ears down on the sand or cover their ears with the cups of their hands. They’ve done this since they were babies. I’ve always known they’re listening to the ocean. Charlie even hums with it. He works until he finds just the right tone, and then he enters into his own little world and sticks with that tone for several minutes. He’ll take breaks, but then he goes back to find that same tone over and over again. I joke that he becomes one with the ocean, but I actually think there’s a level of truth to it.

Multiple times a day, I stop to consider how I’ve been given two children who can’t speak. The awareness is always with me. While having children who are completely dependent upon me is terrifying, it’s also the most awesome experience. It’s indescribable. I might fail at every other aspect of my life, but when it comes to Hope and Charlie, I will serve them with joy, gratitude, selflessness, and a heart filled with the most incredible love I’ve ever known. And while I’m at it, I will learn from them.

Because they can’t speak, they are much more in tune to things the rest of us miss. They take time to see, hear, and feel things the general population takes for granted. And in that amazing state of “special needs”, they experience God. All of nature is God’s tangible communication with us. While we can’t physically see him or touch him, we can physically connect with him through creation. Hope and Charlie get that. When Charlie cups his little hands over his ears and hums with the ocean, I believe he’s humming right along with God. And when Hopey lies down on her face in the sand, digging her arms deep under the sand, I believe she’s touching Him. An awareness and link is there.

There’s a song, “Reckless Love” by Cory Asbury. The lyrics are: “Before I spoke a word, You were singing over me. You have been so, so good to me.” God has been singing over Hope and Charlie since the day they were born. If given a choice between having words to speak or hearing the voice of God every second of every day, I believe they’d choose God’s voice. I know I would.

Is my life easy? Nooooooo. It’s challenging and exhausting. Being everything to two humans each day is tough. I’m always on. Always anticipating. There’s no break. I’m not in it alone, though. God has equipped me, and He’s rooting for me. In all of this, I’m His student, working to keep my mind open to grow. To not overlook the little things.

Next time you’re at the beach, dare to dig your arms deep into the sand and reach out to touch God — or cup your hands over your ears and listen for Him. He’s there. He’s that close.

“The Lord your God is in your midst, a Mighty One, who will save. He will rejoice over you with gladness, He will renew you with His love, He will rejoice over you with singing.”

~Zephaniah 3:17

Down Syndrome, special needs blog, Uncategorized

Take The Five Second Challenge & Be The Change

‘Be The Change’  … Think about those three words for just a moment.

How can you actively “be the change” you want to see in the world?

For me, this is an easy answer.  As a mom to two amazing kiddos who rock an extra chromosome and who are 100% non verbal, I’d like to change the way the world too often views them.  Lumping the special needs community into a one size fits all category is dehumanizing.  Sounds a bit harsh, I know.  But it’s true.

“Down syndrome kids are always so happy.”

Is that so?  (cue rolling my eyes as far back in my head as is humanly possible).  Talk to me about how happy cutie pie is when I say no to that Oreo cookie.

“Down syndrome kids are so loving … they love everybody.”

Ummmm.  My two ragamuffins are completely nonverbal, yet they’ve figured out a way to constantly grunt, groan, and fuss at each other just like typical siblings … This is more like toleration, not love.  haha.

I hate to burst the bubble, but in my home, beyond the almond shaped eyes, small stature, and bright smiles are two individuals who have distinct personalities, temperaments, strengths, and weaknesses:

A diva who will size you up in a heartbeat, Hopey is fiercely independent and feisty:

Hopey Braids

Charlie, on the other hand, couldn’t be more different.  He’s a soft cuddle bug who’s a master charmer when it comes to getting his way:

Charlie Swing

Hopey is mischievous and funny,  while Charlie is a more go with the flow kinda dude.

Both will go outside to play for the same amount of time … Hope will come dragging herself in the house with skinned knees looking like she’s been wrestling a couple of hogs in a pile of mud while Charlie will look like he’s just bathed and is ready for Sunday School.

I foresee a day when people will automatically accept them and see them as individuals instead of brushing them with the broad stroke of Down syndrome.  When accepted as individuals, Hope and Charlie become human and worthy of identity and relationship.   Neither should be expected to fit into a once size fits all Down syndrome kids bucket.  You get the point.  Yes, both are kids who have Down syndrome … but more than anything else, they’re just regular kids.

be the change 3

I’ve immersed myself in the differently abled community.  It’s become my passion and my life.  In the process, I’ve made very real friendships with many adults who have intellectual and developmental disabilities.  Just like Hope and Charlie, each are unique in every sense of the word.  Through my own relationships and experiences with these amazing individuals , my desire has grown for others to see what I see.  All people, regardless of ability or disability, are much more alike than different.  Whether differently abled or not, for instance, we all love the anticipation that comes with Christmas Eve, how sand feels when squished between our toes, the view from a mountain peak, time spent around a campfire with friends, a sloppy kiss from the family dog, a new pair of jeans that fit just right, the crisp edges of a fresh baked brownie … am I right?

At the same time, though, we are all a bit different.  Some of us are born Chatty Cathy’s while others are excellent listeners.  Some of us are athletic while others are artistic.  Some of us have arms and legs … others were born without limbs.  Some of us have brown eyes, and some have blue.  Well … in the same way, some folks were born with an extra chromosome, while others weren’t.  It’s no big deal at all, because differences are never a bad thing.  They’re just a thing.  And those things that make us unique might actually be what make us most interesting.

I was given this shirt by Bee Attitudes , and was challenged to describe how I’m being the change I want to see in the world.  I’d honestly never thought about it before, but it makes perfect sense when you think about it.  If I want the world to treat Hope and Charlie with love, honor, acceptance, and respect, then I must treat the world, especially the differently abled world, with love, honor, acceptance, and respect.  Through my friendships with the differently abled community, I guess I’ve lived out the term ‘Be The Change’.  How I treat those individuals (since I pretty much adore them) is definitely how I want others to treat my two loves.

be the change 2

 

Here’s my 5 second challenge to you.  If an individual who is differently abled is placed in your path, no matter where you are … at church, a restaurant, a grocery store, or a ball game … introduce yourself.

“Hi, my name is Melanie, what’s your name?”

It’s that simple.

Then follow up with a warm smile and a handshake.

That simple act not only takes five seconds of time, but it validates that you see that person as an individual.  As human.  As equal to you.

I’d love to hear from you.  In the comments, tell me about how you are being the change you want to see in the world.

Remember this:  In the big picture, God never makes mistakes.  And when we choose love, we’re all The Change.

(With every purchase, Bee Attitudes gives back to charities who are making a change.  Be sure to click the link and check out their site!  This mustard colored shirt is one of the softest shirts I’ve ever worn.  The fabric is bouncy, so it hangs nicely.   Not to mention … what about that cute message?)

Just my thoughts,

~Mel

christian blog, Down Syndrome, Fitness, get fit, Health blog, self care

How A Special Needs Mom Fought Loneliness With Three Easy Steps … and Won!

kuhl jacket 4

I’ve been a special needs mom to a princess who rocks an extra chromosome for more than 13 years, and thanks to the miracle of adoption and a red-headed cheese puff who also rocks that extra something, I’ve been a special needs mom to two kiddos for 10 years.  Both are non-verbal, and both are a handful of mischief, drama, and constant giggles.  Like typical siblings, they fuss with each other (which amounts to grunting back and forth for what seems like an eternity at times).  They take things from each other, occasionally pinch one another, and even manage to tell on each other.  Picture little man grabbing my hand and pulling me to his big sister, then bursting into tears … while at the same time, big sister rolls her eyes and looks away.  Yep.  She’s usually guilty.

hope and charlie with momma!

Neither can take care of any of their needs independently.  They rely on me completely.  I dress them, bathe them, feed them, put them to bed, and read their minds (at least I try).  I talk to them, filling in their quiet with my own version of what they’d probably like to say if they had a voice.  Hopey has a high cartoon voice when I speak for her.  She thinks it’s hilarious, especially when I roll my eyes, stomp my foot, and act like a true teenage girl.  For Charlie, I use a sweet baby voice … because he’ll always be the baby of the family.

We try to agree on music in the car.  If I choose a Luke Bryan or Bruno Mars song, we’re always good.  But when I step outside the box, they sometimes break down into sobs.  We try to agree on clothing choices, but they’ve been known to rip off their clothing just as I finished getting it on their wriggling bodies.  Charlie, for added affect, likes to throw his shirt across the room.  Uhhhhhm, I guess you don’t like the shirt choice, dude?  haha.  (Did I mention they are full-on drama?)  I can laugh about it now.  I mean, c’mon, it’s funny.

The stress level of a special needs mom has been likened to the stress level of a combat soldier.  I’m convinced it isn’t necessarily because the role is so difficult, but because special needs moms never feel like they’re doing enough for their kiddos.  We question ourselves constantly.  Have we provided enough opportunities?  Therapy?  Education?  Are we feeding them too much?  Are they exercising enough?  Did I remember to double lock the doors so she can’t escape during the night?  Is his sniffle worth a doctor’s appointment?  Or is the risk of him catching something worse too great for that appointment?  And don’t even get me started on how much we worry about our child’s future.  Honestly, our minds never shut off.

There was a time when I was so caught up in figuring out how to be a special needs mom that I forgot how to live.  Unintentionally, I closed doors on friends and family who’d been in my life for years, because I felt they couldn’t possibly understand my new normal.  One day, I awoke to an overwhelming feeling of loneliness and regret.  I’d been so laser focused on reaching my two kiddos, that in the process, I forgot that I needed a support system.  I felt lost.  I thought I was being the best mom in the world.  But you know what I realized?  If I lose myself, I’m not being the best mom I can be.  More than anything else, they need me to be me.

I’d like to say that with this realization came a sweeping life altering shift.  As with most change, however, it was slow and steady.  I began by hiring a trainer.  I felt if I committed to her and to a schedule, I’d stick with it.  As it turns out, she became my biggest cheerleader.  Not only did she daily encourage me to push through my workouts, as I got to know her, she slowly invaded all of my empty, hurting spaces.  She asked me questions about my life.  She listened.  And she reminded me that I’m enough and that God is always with me.  Last year, she challenged me to run a 5K.  I ended up running thirteen.  She’s been my trainer for four years now, and I count her as one of the best friends I’ve ever had in my life.  The gym quickly became my community as I met new people.  In the process, I became physically stronger.  The more fit I became, the happier I felt.  My energy increased as endorphins kicked into high gear, I went from a size 8 to a size 4, and then one day I realized I felt like myself again.  It had been years.

tonya and me --- hot chocolate race 2018

Around the same time, I decided to open my home once a month to a group of my best buddies for a pizza party and karaoke.  They are all so much fun, I knew they’d usher happiness right into my life on a regular basis.  And they never disappointed.  What I didn’t expect, though, was what a tremendous role their parents would play in my fight.  These selfless moms and dads would drop off or pick up their adult children, and instead of walking away, they’d hug me.  They’d look me in the eyes and thank me for hosting a party.  Sometimes they’d come into the house and chat with me.  They made an effort to get to know me and my children.  Welcoming me into their lives without any walls, prerequisites, or expectations, they made me feel like a part of their families.

halloween pizza party

And finally, I became intentional about hiring sitters so that I could get out and do regular things that other moms get to do.  I have to say, God really showed off in this area.  I was terribly slow to trust others with my munchkins, because remember, I never left them.  So it was going to take some super fantastic girls who had a true desire to spend time with Hope and Charlie before I’d be able to leave them.  He brought me Nancy, Dana, two Hannah’s, Kelsey, Katie, Bryn, Bethany, and Rikki.  I can’t say enough about these girls, who are my superheroes.  Each wear their love for my kiddos on their sleeve.  They’ve worked tirelessly to break into Hopey’s tiny circle, they’ve tried every trick in the book to get Charlie to eat solid food (at 10 years of age, he still has his food puree’d and put into a bottle), and they’ve recklessly embraced all of me.   Whenever I attempt to show them more love and appreciation, they immediately meet we with the same.  They’re like beautiful mirrors reflecting everything I have to give right back to me.   I treasure them.  In every way, they are the hands, feet, and heart of God.

hannah and bryn

Life is messy.  There are times when we wake up and wonder how things became so crazy.  Can you relate?  But my message is that it’s never too late to make changes.  Maybe you’ll be blessed by getting a chance at a re-do.  Or perhaps you’re like me, and you’ll have to start all over from scratch.  It doesn’t really matter as long as you dig your heels into the dirt and move forward with intention.  I began with three simple goals.

  1.  Exercise so I can be healthy enough to raise my kiddos
  2.  Open my home to others
  3.  Hire sitters so I can occasionally get out

I stuck with them, continued to move forward, and my life totally turned around.  Not only am I not lonely, my life is filled and overflowing.  If I can do it, so can you.  What are your three simple goals?  Write them down and make a decision to hold yourself to them.

Just my thoughts,

~Mel