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No Longer Part of the Societal Norm

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If you’re a special needs mom, you can relate to the annoying realization that comes with no longer fitting neatly into societal norms.  Your life is different now.  Way different.  Your child may not be considered typical, but as a special needs mom, you aren’t typical anymore either.

I mean, wouldn’t you like to to have a full six hours of sleep every night?  Wouldn’t you prefer to appear relaxed instead of walking around looking like you’ve  been on a ten day binge because your child has decided sleep is no longer a necessity of life?  In the place of snoozing, he’s found he’d rather knock on his door throughout the night, which alerts your dog that a visitor is at the door … and between the knocking and barking, you just can’t sleep.  Who could?

Does this sound remotely familiar?

And oh my, wouldn’t you like to have the time to binge watch Scandal on Netflix?  Binge watching … we’ve heard of it, but haven’t tried it yet.  It sounds quite wonderful.  Heck, I’d settle for watching one uninterrupted episode.  haha.

How we’d enjoy feeding ourselves without worrying if our kiddos are going to swallow wrong, have an allergic reaction, or choke.

…drinking a cup of Starbucks while it’s still halfway hot.  I hear it’s heavenly, but haven’t a clue.  It still remains hearsay.

…for our houses to stay Pine Sol fresh and clean for more than fifteen minutes at a time.  I admit, I sometimes take pictures on my cell phone the second I’ve cleaned just so I can bask in the glory of it all.

We wish our kids wouldn’t escape if a door or window is left slightly ajar, because then we wouldn’t have to check, re-check, and then check every single door and window again.  And again.  And again.

We’d pass out cold if our family members were supportive of our unorthodox lives.  “What can we do to make the holidays work better for your family this year?”  Would be nice.  Or even, “Your family is actually invited for Christmas this year.”  haha.

And we’d give anything to have friends who stick … who wouldn’t walk out of our lives when things with our kiddos get uncomfortable, complicated, or tough.

We’d like to go to church the way other people go to church.

We can’t remember the last time we went a full day without fearing for our child’s future.

We keep ourselves healthy so we’ll (hopefully) outlive them.

And we pray for them with every breath.

Wed like to eat out without worrying that our kid will melt down, get up and join the family seated at the next table, or hurl a roll at the nicely dressed man who’s seated nearby.

We’d like to attend the symphony, an opera, or a theatrical play.

…to go camping again.

…to skip a therapy appointment or two.

…to never see a pediatric heart surgeon again.

…and to hear our kiddos say “I love you”.

This is our reality.  And it’s why we bond together so effortlessly.  No one gets us the way we get us.

We may not be typical any longer, and we may not fit into society’s box, but we clearly see what’s important in life.  Our list is short, and it doesn’t include clean houses, perfect holiday parties, or the opera.  It’s actually only three words.

Love, Patience, and Acceptance.

And that might be worth more than all the hot Starbuck’s Caffe’ Lattes on the planet.

The following is a clip about one of those societal norms that we just don’t have time for anymore.  Enjoy:

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Road Trip Day 2 – Indianapolis

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The second stop on our road trip was an overnight stay in Indianapolis, Indiana…and our biggest surprise was the Children’s Museum.  It is spectacular!  Soaring ceilings and bold colors beckon for kiddos to come play.  We arrived late afternoon and stayed until it closed, leaving no stone unturned.  The Dinosaur exhibit is terrifying on a grand scale, the Hot Wheels exhibit is interactive beyond what anyone would ever expect….and the new Dance exhibit had us shaking our booties like nobody’s business.   The staff was helpful and informative, several even intentionally sought us out and moved us toward particular sites they believed would be especially enjoyable for Hope and Charlie.  For individuals who have different abilities, this museum has hit the mark.  Accessibility is super easy. Bottom line:  GO!!!!

After checking into our hotel, we spent the evening at White River State Park.  Located on 250 acres at the edge of downtown Indianapolis, there is plenty of space to roam and explore.  Dotted with water features, gorgeous landscapes, and modern art, the park is picturesque.  And best of all, for those who want to add to the outdoor experience, there are many extras within walking distance of the park including an IMAX Theater, the Indianapolis Zoo, and Victory Field (home of Indianapolis Indians’ baseball).  Literally, you could spend a couple of days in this park and not see everything there is to see.  We were there until after dark and felt extremely safe.   It’s well lit and there’s a parking garage connected to the park for easy access.

Indianapolis didn’t disappoint.  Whether you’re just passing through or making it a destination, it offers a lot for families of children who have special needs.  We liked it so much, we’re stopping by again on our way back to Tennessee.  Here is a video highlight of our time there:

 

 

What are your favorite spots to visit?  I’d love to hear from you!

Be Blessed!

~Melanie

Road Tripping With Kiddos Who Are Differently Abled – Louisville, KY

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Would you rather?  Have you ever played that game?  Well, here’s one for all of you who parent special needs kiddos.  Would you rather cram needles up under your fingernails?  All of them.  Simultaneously.  OR take your child who has special needs on a road trip?  It’s a toss up, right?  I mean, oh my Lord, the transitions.  The bathroom pitstops alone are enough to rattle a panic attack or two.  Sure, there’s a chance the public bathroom will have a couple of clean stalls.  There’s even a chance that your child will happily agree to utilize one of those two clean stalls.

BUT (you knew there had to be a ‘but’ coming in here somewhere),

Is there a chance he won’t touch the toilet paper dispenser with both hands?  Is there a chance he won’t promptly sit his fanny upon the toilet seat BEFORE you get it covered completely with toilet paper?  And what if he pulls used paper towels from the trash and wipes his face with them before you can scream STOPPPPP???

Wouldn’t the needles be quicker and less painful?

Maybe not.

charlie kentucky

Today marked the first day of a quick road trip with my two cutie bugs who happen to sport an extra chromosome, and for the most part, we succeeded.   It’s only Day One, though, so there’s still plenty of time to crumble.  After eleven years of being called a special needs mom, I still don’t have all the answers to this unique journey.  Two things, however, I do know for sure.

  1. My kiddos are far smarter than most people give them credit for, including me.  Behind those sweet smiles and innocent looking eyes are conspiring little hooligans who have no real use for clothing, rules, or social graces.  And if given the chance, they will outplay me.  Nudity…even partial nudity… is not going to fly.   Ever.  Especially in public.  The rest, for the record, is just a daily crap shoot.
  2. My kiddos want to succeed.  Even more, they want me to see them succeed. If I plan activities that are going to be too challenging or time consuming,  I could be setting them up to fail.   As a result, I’ve learned to keep it simple.  It’s better for them to win with something small than to fail, because with each success, they become bolder and more confident.  That’s a good thing.

As you’ll see in the video below, we spent our day in Louisville, Kentucky.  And we kept it super simple.  The first part of the day, it rained.  Lucky for me, my kids love the rain.  We found Cherokee Park and they played in mud puddles, took on the playground, and explored.  Cherokee Park is huge, more than 400 acres, so there is plenty of room to roam.  It’s also off the beaten path, filled with towering trees and secret winding paths, so it felt like an adventure.  Hope and Charlie loved it.

After Cherokee Park, we cleaned up and found a Moe’s Southwest Grill.  It’s familiar.  Enough said.   And with your meal, you get a full bag of chips, which makes momma happy.  It’s familiar for the kiddos.  Momma’s happy.  Win. Win.

Finally, we spent the evening at Waterfront Park where we were entertained by street performers, gently rocked by two person swings, and mesmerized by a magnificent pedestrian bridge that lights up like a rainbow when the night creeps in.  This was our favorite part of the day.  Downtown Louisville is not only a perfect fit for families, it is beautiful.

Here is a peek into our day.  It begins and ends with country music, because life is just better with country music.  haha.  Enjoy:

 

 

Tomorrow is another adventure.  Day two, here we come!

~Melanie

Pray Big. Today.

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How big is your faith in a God who can move mountains and cast them into the sea?

How big is your faith in a God who can create man from the dust of the ground?

How big is your faith in a God who used ordinary men and women to do extraordinary, history changing, live saving things?

Consider it.

Measure it.

And then realize that God will meet you wherever your level of faith is.

Right now.

Jesus was matter-of-fact: “Embrace this God-life. Really embrace it, and nothing will be too much for you. This mountain, for instance: Just say, ‘Go jump in the lake’—no shuffling or shilly-shallying—and it’s as good as done. That’s why I urge you to pray for absolutely everything, ranging from small to large. Include everything as you embrace this God-life, and you’ll get God’s everything. And when you assume the posture of prayer, remember that it’s not all asking. If you have anything against someone, forgive—only then will your heavenly Father be inclined to also wipe your slate clean of sins.”  Mark 11: 22-25

Just my thoughts,

Melanie

This Is The Day!

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Being the mom of a special needs kiddo has been likened to the job of a combat soldier.  At least the stress level.  Well, I am the mom of two special needs hooligans, and I can totally relate on most days.  It’s easy to get lost in the monotony of it all.  Then there’s the isolation and loneliness.  And that fact that most people cannot relate.  Or how about that schedule?  And the fighting for your child at every turn?

Uhhhh, yeh. Put all of those kinds of things together and add the worry about your child’s future and BOOM!  Combat soldier level stress.  But The Lord says we are to rejoice and be glad in each and every day.  He knows what our days and nights are like, because He ordained them.  He chose this calling for us.  Obviously, then, we are equipped … which implies that rejoicing and being glad are choices we can make.

So today, even if you’re feeling like a combat soldier, take the time to rejoice and be glad. Maybe there’s a secret benefit to us when we make that choice.  I believe there is!

Just my thoughts,

Melanie