Surgery #5 & RMH

Elena completed her fifth surgery this week.  Once again, we loaded up the van and road-tripped east out to New Jersey to see good ole Dr. Nuzzo for the third time.  Thankfully, our hip surgeries are behind us (see here & here) and they are in perfect shape.  Thank God for crazy Dr. Nuzzo!

In the last several months, Elena has struggled with high muscle tone in her right leg, specifically ankle/foot.  This has caused issues with her trying to take steps, weight bearing evenly and getting range on this leg.  The technical term is called a contracture and these are VERY typical in CP kiddos.  Basically her brain is constantly telling her muscles to tense up, often in strange positions.  Hence, her arms usually up close to her chest, her legs extended out, toes pointed, etc.  Over time, these positions cause the tendons/muscles to "shorten" and stay in this position.  We were no longer able to "stretch" her ankle to a neutral/flat-footed position and it was slightly turned in.  I knew surgery was the only remedy but have procrastinated ANOTHER surgery for most of this year. 

Almost four years to the day of her first hip surgery, we found ourselves once again in Summit, New Jersey with Elena on the operating table.  Fortunately, we knew this go round would be MUCH easier, MUCH less invasive and a breeze compared to her previous two hip surgeries.  As we expected, Dr. Nuzzo in his "mad scientist" genius knew just what to do and fixed her right up.  She has three VERY minor (practically scratches) incisions and has been doing just fine.  Her pain has been minimal but are keeping an eye out for muscle spasms (which are totally typical). 

We are back home and she will finish out the week at school!  We are so very, very thankful to have options when these types of medical issues arise for her.  I'm not sure what shape she would be in without Dr. Nuzzo's innovations.  Thanks to all who prayed us out there, and prayed us home!

Of course, we had to fit SOMETHING fun in.  So we popped over to the Jersey coast to see the Manhattan skyline and the Statue of Liberty!  I think Elena was thrilled to have some alone time with Mom and Dad!

Before our road trip to Jersey, we attended the Ronald McDonald House Gala for our 6th year.  You may remember these events from previous posts.  Each year, our loving and generous friends gather to support us and one of our most favorite causes, the RMH.  You may remember how big a role this special place played for us while in the hospital after Elena's injury.  We have been thrilled to be able to give back over the last seven years.  And the RMH has been so kind to include us in many of their fun events and fundraisers throughout the year.  (You may remember Elena throwing out the first pitch at the Indianapolis Indians game earlier this year?!)  

This night is tremendously special for us not just because some of our closest friends join us to raise money for a worthy cause, but because this event almost always falls very close to the date of Elena's injury.  It's been such a precious way to remember and give back to those who helped us in our time of need.  

This year was even more SPECIAL!  We had five tables (50!) people there to represent the Friends of Elena Hinton.  Those fifty people donated their time and money to support the RMH.  Not only that, a special friend of ours matched all our group's donations that night!  We were able to raise $38,000!  Of course, everyone but us was in on the surprise and Chad and I were incredibly moved.  It never ceases to amaze us what people do to show their love and support for our Elena.  So thank you to all of you who were there that night.  You will NEVER know how much we appreciate you, your love and generosity.  

Seven Years Later

As I sat down to write this post, the dreaded November 3rd, relive the trauma, revisit all the emotion-post, my thoughts were all over the place.  From deep reflection of where we started seven years ago to where we are now, to what comes next in our journey, to what I’ve learned as a Mom to Elena, to Calvin and to Turner, I couldn’t nail down a specific train of thought.  I spent two hours writing random paragraph after random paragraph and hoping that in the end I could piece it all together in some fluid, sensible piece.  Well, I couldn’t (ha!).  So this is what I could piece together.  Whenever I share with you, I do my best to be as honest, vulnerable and straight-forward as I can be.  I’m pretty darn imperfect, but this is my experience, how I feel.  I share so that you may find some comfort for whatever it is you’re facing.  Because we’ve all got something, can I get an Amen?!

November 3, 2018.  This year is different.  There’s no explanation really.  I just feel as though my heart has closed a significant chapter of my life.  Much of what that entails, the intense pain, the gained perspective, how I learned to live again feels mostly settled somehow.  As this dreaded date approached this year, I found myself seeing it on the calendar, but not feeling it.  In years past, I would feel anxious as it approached, almost stuck in a reoccurring nightmare.  I would relive the entire day.  This year has felt like more of a remembrance, a day to note, not a day that grips my insides in terror and grief.  It replays in my mind with a deep sadness, but not the horror like it used to. 

I haven’t quite identified the reason for this yet, though for some time (as I’ve written about), I’ve been much more at peace.  It has felt as though I had begun to walk away from the trauma, settle my feelings about our journey, even “cruise” for a bit.  But even feeling settled has it’s little ups and down.  I’ve done a lot of clinging to the controls and hitting the panic button from time to time.  It’s so hard for me to remember God’s goodness and faithfulness at times, thinking I know better, that I can do better.  And it’s in those times I need to remember where I’ve been, what I’ve been through, and more importantly, what He has brought me through.

I’m a pretty average person with a pretty average life.  I had something really, really terrible happen to my family.  And in the first 20 seconds of me being told I needed to race to Riley Hospital to meet my (likely dead) child, I screamed the only thing I knew to scream.  Jesus.  Nothing else.  No prayer.  No please let my child live.  No what happened.  Just Jesus.  And seven years later, even through the darkest, hardest, loneliest days of my life, He has been there.  Whether you began reading this blog seven years ago or seven days ago, I hope you realize that all of this is credited to that.  Not to me or my strength or my writing or my love for my daughter.  There has been one thing keeping me going, our family together, and our daughter the light to so many lives.   

Sometimes I forget that.  I get all wrapped up in my feelings and my fears and my anxieties about how hard life is.  I panic about what comes next, how we will endure, how to keep it all together.  And all along the answer is always simple and whispered in every beat of my heart.  Jesus.  I don’t know why this happened to us.  I don’t know why she lived that day.  I don’t know what lies ahead.  But I do know He is good.  He is faithful.  He loves me more than I could ever possibly fathom.  I know I don’t need to have all the answers to go on.  I just need these truths.  And to remember what He has already carried me through.  The rest of it is just complicated, feeling-ful me, navigating a life that I didn’t expect.  Yes, it’s messy.  Yes, it was traumatic.  Yes, it’s grief I’ll carry for ever and ever.  But, I’m loved and I never have to carry the weight of this alone.  I never have to do this perfectly or with ease.  I just trust. 

I welcome a pain-free November 3rd.  I have long preferred it to be a celebration that my child lived, my heart has just taken a really long time to ease it’s grip on the trauma and focus on the joy.  There was so much darkness that day, everything we held dear was under attack.  However, I choose to remember all the love that filled those hallways, those tiny hospital rooms, our hearts, the hearts of those who held our hands. Those wonderful friends and strangers who surrounded us, held us up, prayed with us, I remember.  And of course the miracles, there were many that day.  I choose to remember that.  Our Shining Light was re-born that day, her light brighter, our love stronger, our faith deeper.  We choose what we remember.  And on this day, seven years later, I remember that love won.  He saved her.  And He saved me. 

Truths and Lies

For full disclosure purposes, as I am posting today, I am sitting comfortably on my couch in a kid-less house (can I get a Hallelujah?!) However, I wrote this post last Wednesday and well, just haven't posted it until today.  They say the days are long and the years are short, but is it possible that the days both feel so short that you have done nothing except break up misbehaving toddlers all day, AND feel infinite AT THE SAME TIME?  Well this tardy post can, in fact, be the scientific proof behind that theory.  Regardless, read on....


Today, I’m spending a couple hours sitting on the banks of a creek in Mooresville.  The day is perfection, sunshine, light breeze.  The leaves are slowly beginning to fall, finding their way into the water, destined to flow wherever this creek leads.  There are crickets and birds chirping, an occasional jet taking off from the nearby airport roars overhead.  But, it’s stunningly peaceful.
I have spent hours at this park.  I come here often when Elena is in therapy at the nearby Jackson Center.  Surprisingly, it’s a ridiculously great park.  There are several playgrounds for the kids, miles of trails, woods, meadows, this beautiful creek flowing through the middle of it.  I run here.  I sit here.  I’ve brought the boys here.  I organize a lot of my thoughts here. 

Though today presents quite a contradiction for me.  The external doesn’t match up with the internal.  Isn’t that such a weird feeling?  When you find yourself in the most remarkably peaceful place and in your head, your thoughts are roaring? 

This ebb and flow is pretty typical for me.  I go through times where I feel like I have a handle on life and other times I feel like life has a hold on me.  Lately, the latter is true.  I’m certainly not busier than the next person, but where I struggle is that sometimes I feel like my busy is so consuming mentally, physically and emotionally that it begins to break me down.  Specifically, there is just so much to manage with Elena that I easily get overwhelmed.  I’m not going to bore you with my to do list but I wear so many darn hats, simply with her, that it makes my head spin.  I’m Mom. Advocate.  Educator.  Doctor.  Therapist.  Scheduler.  Taxi driver.  Feeder.  Pharmacy.  Bather.  Dresser.  Cleaner.  Lifter.  Kisser.  Insurance Expert.  Hair brusher.  Stylist.  Equipment Specialist.  Communicator.  And about a million other things. Caregiving is all consuming for me all day, every day.  And sometimes that just wears me out.

When I get overwhelmed, my immediate reaction is to shut down.  I play my Scarlett O’Hara card, that I’ll think about it tomorrow.  Tomorrow turns into next week, then into next month and so on.  The problem with this is, when it comes to Elena, I AM her voice.  If I don’t do it, if I’m not on it, if I don’t make it happen, it doesn’t.  I am tasked with being her voice in this crowded, unfair, busy world, and somedays, that is a real burden.  After all this, then kicks in Mom guilt, exhaustion and fear. 

Fear, the biggest liar of them all.  But, to me, the realest of them all.  My mind starts thinking ahead to forever.  This is my job forever.  I am her voice forever.  I am her caregiver forever.  This job carries on forever, no vacation days, no sick days.  Forever.  Is this sustainable forever?  Can I do this forever?  And then I’m terrified. 

Now, let me Asterix that previous paragraph by saying, while those feelings are 100% real and (please note) make me really vulnerable for saying them, I simultaneously feel gratitude and privilege at those same tasks.  I know that doesn’t make a lot of sense, but anyone who has ever been a caregiver to someone they love, surely can understand my struggle between burden and privilege.  Elena is my heart and it honors me to love on her daily and be her voice, but that road ain’t easy, ya’ll.  And when I have only lived this journey a miniscule amount of time, the decades ahead , the growing into adulthood, the everything-I-have-no-idea-about can be incredibly daunting and often causes a paralyzing fear. 

But, what I have learned in the last seven years is that yes, fear is a shitty little liar (apologies for the cursing, but I really needed it for emphasis).  Even worse, is that I know that and still give it control over me.  I’ve learned that the first tool to combat it is admittance.  Once I recognize that I’m overwhelmed and scared, I can prepare myself for battle.  Our life with Elena is a fluid process of learning, living, loving, grieving, frustrating ball of heartache.  It’s not a something-that-happened with a nice little bookend to mark the beginning of the trauma and the end.  The same feelings are cyclical.  They go away for awhile and then pop up way down the road.  I guess if I was really digging deep, I’d call it grief.  I don’t think I’ll ever stop mourning what happened to our family and the life that I fully expected to have.  Yeah, it goes away.  I’m all cool and reflective.  And then in some way or another it pops up again to make me remember that my expectations were shattered.  You remember?  My grief bubbles.

Fear is a real loser, though.  When I stop and think what I have survived, the murk that I have waded through, I kick myself for even letting fear get the best of me.  That overwhelming feeling I get when life gets too hectic?  It’s fear.  That feeling I get when I’m not sure what is going to happen next?  Fear.  That nervous feeling I get when I don’t feel like I’m doing enough, am organized enough or involved enough?  Fear again.  It’s all lies.  Told you, fear is a liar. 

Alright prepare yourself, I’m about to get all metaphor-y up in here.  So today, among all this beauty and peace surrounding me by this creek, I’m declaring myself free.  I’m going to ignore the occasional overhead roar of the jet engines and let all this beauty sink into my soul.  I’m going to listen to what matters around me, the lovely sounds, the whispers of the wind, not the roars that are loud but merely temporary.  I’m admitting that these fears I feel, these real and present fears, are invalid and conquered by promises that have already been made to me.  I will remind myself that I have lived, been wrapped up in, surrounded by these promises  And they are true.  They are my armor.  The roles that I must play are just roles, they are not who I am. 

This is forever a learning process for me.  Even though at times, it feels like I’m making the same mistakes and the same feelings bubble to the surface, they are always quelled once I’m reminded of the truth.  My life is a constant push and pull, ebb and flow but also, abundantly full.  It’s necessary for me to stop and take stock of the stillness, beauty, joy, peace, goodness and faithfulness when the roars of my head become too loud.  I'm certain that I'll have to remind myself of this about 20 more times just this week, but I'm glad to be a work in progress.  I'm glad the struggle can remind me to where I've been, what is true and whatever lies ahead is nothing to fear. 

Ok done with the metaphors.  And done writing, as the rocks making up this beautiful creek bed I’m sitting on have officially become uncomfortable and I have a cramp in my leg.  In short, fear=lies and His promises=truth.  Good, we’ve got it. 

2 Corinthians 12:9
Each time he said, “My grace is all you need.  My power works best in weakness.”

Summer Recap

Summer has come and gone (though technically it's still here).  It literally flew by.  Well, some of the days were endless...especially the two weeks before school started.  But mostly, it was gone in an instant, which can be said for practically all of time these days.

Elena's birthday was the best one yet.  Her party, her summer, her spirit.  They're all just YES!  I can't really explain it, but it's so refreshing to have a stride, to just enjoy and not be worked up about the never-ending somethings that are always lurking.  And I felt that's how this summer was.  We all relaxed, enjoyed, celebrated, rested and were just at peace.  (By "we" I mean Elena and me, no one else really relaxed!)  Settled.  Life is by no means smooth sailing, but I just feel settled.  And that's a really nice place to visit awhile.

Elena started first grade a couple weeks ago.  She, of course, loves it.  There's always some ironing out to do, some advocating to happen, but mostly, she's in a wonderful place where she's loved, appreciated and believed in.  Her peers are wonderful, fighting to be the one to push her swing at recess or talking to her in the hallway.  She lives for this kind of attention and it makes my heart leap to see her in this environment. 

School can bring a lot of grief bubbles to the surface for me, and per usual, it has already this year.  There are a lot of places where being "different" doesn't affect me, but school is always a tough one.  It's a place where our differences follow us around with flashing neon lights.  These are MY insecurities though, not Elena's.  School is her happy place and that makes ME happy. 

The boys are growing like crazy.  Calvin is in Pre-K, loves following all the rules and living in the delight of a regimented routine.  He's mostly helpful, though some days when I ask him to do something for me, he tells me his legs are broken.  Oh well, I mean I can't be mad at that response.  Currently, he practices for his future career as a rock star every day.  Concerts usually begin after dinner and conclude whenever Chad and I can take it no longer.  When he's not belting out Tom Petty or Bruce "Stingsting" (as he calls him), he's practicing for his future on the PGA Tour.  I, personally, feel more comfortable with him being the next Jordan Speith than I do the next Justin Bieber.  Just last week he successfully made the jump from his balance bike to our neighbors pink Hello Kitty big kid bike, sans training wheels.  He was pretty darn proud of himself (as were we!) and had no qualms about achieving his success on a girls' bike.  My kind of guy!

Turner is the complete opposite.  He hates school, cries at every drop off, doesn't comprehend rules, despises not being given a snack every 10 minutes and is the antithesis of helpful.  But he is so darling sometimes I forget how frustrating he can be for that 30 seconds of darlingness.  He just celebrated his 2nd birthday last week.  And honestly, it feels like he should be at least three!  Bubba and Daddy are his favorite people and he only likes to do what Calvin is doing.  Recently, he has also began his efforts towards being a child golf prodigy, which I, again, much prefer to his other interests like jumping head first into things and playing with knives.  He refuses to wear a helmet when stealing Calvin's scooter and is desperate now to ride a bike.  Poor T is always a few steps behind and suffers severely from FOMO (fear of missing out).  The little guy is definitely as crazy as I make him sound, but equally so, he is such a lovebug. 

Every day is an adventure and I'm so thankful for school and busy summers that go by quickly.  Props to you summer bucket list Moms, I ain't one of 'em.  My summer bucket list is to survive and celebrate August.  I did both, so life is good.  Even though there's still a few weeks left before the seasons begin their change, I always anticipate the next.  It's such a metaphor for life.  Change is good, sometimes hard.  I hate to say goodbye to swimming, sunshine, sleeping in and warmer weather, but there's still so much goodness left ahead. Time marches on, and so will we!

Summer boating

So much swinging, thank God Calvin learned to swing himself and Turner.

Big girl's first day of school

Pre-K

They loved each other here.

Didn't quite understand what he was doing.

My Birthday Babe

You, who have been following our family for the past seven years, have shared in the ups and downs of the road we have travelled with Elena.  I realized, however, that many or even most of you know what we have been through, but you don’t really know our Elena.  As any kid with a disability, she is so much MORE than what her challenges are!  On her seventh birthday, I want to share my girl with you.  I want to introduce you to the heartbeat of our family, our Elena. 

When I look at my seven year old Elena, I see a beautiful little girl with steel blue eyes and long black enviable eyelashes.  She has golden hair, curled just around her face, ruby-red lips that one could swear are lined with lipstick (but aren’t!) and the tiniest bit of freckles that run the bridge of her nose to just above her cheeks.  She has a big girl smile, still waiting on two teeth in front to come in.  When she is able to look me in the eye, it makes a little piece of my Mom heart soar.  She loves getting kisses, the more at once the better and is the most ridiculous snuggler.  Burps, coughs, sneezes, yawns and toots still make her roll with laughter.  Her neck and ribs are the most ticklish  and when she sleeps she looks like an angel.  When her hands are relaxed, fingers open, outstretched, they’re still chubby with dimpled knuckles and are as soft as can be.  She is perfect from the ringlets on her head to her curled under toes. 

She loves all the Disney Princesses, Moana especially, and never tires of the Disney Hits playlist on Spotify.  We have heard them all thousands of times but the ones with prominent harmonies and “big finishes” or crescendos in music speak, really get her grooving.  Her taste is eclectic, dancing along to Taylor Swift to Queen to Mary Poppins.  She’s happiest in the pool where she can float, swim and squeal with each splash.  As any big sis, she often gets annoyed by her loud brothers but just as often, they keep her smiling and laughing.  She laughs when they get in trouble and loves their nightly hugs and kisses.  At school, she loves when her friends talk to her about nail polish, unicorns and their weekends.  Each day this year she would come home with a backpack stuffed with hand drawn pictures and notes.  She loves to swing because the wind blows in her face and that’s always made her smile.  The same with the sun, throwing her head back, grinning and blinking as it shines on her face.  Books have always been a favorite, but only ones that have a good cadence and rhyme to them.  When an airplane flies overhead, she stops every time to listen and then breaks into a huge smile.    She has a strong preference for loud people and if you’re silly and loud, you’re even better.  She likes to be read to, sung to, talked to, cuddled with and told she smart and pretty. When she can get it out, she loves being loud and vocalizing.  Lately, in public restrooms she screams with delight when you flush the toilets, the louder the better, then uncontrollably giggles when you tear paper towel off the automatic dispenser.  When I have to get the ‘honkies’ out of her nose, she always laughs and snorts.  We read the same book to her every night before bed and she’ll fuss if you try to sneak in a different one.  She goes with the flow, is happy 95% of the time and never protests a therapy or doctors appointment.  Elena is funny, sweet as can be, resilient, brave, strong-willed, determined and loving. 

There are many things physically that are difficult for her, but it doesn’t change her spirit.  It’s hard for her to hold her head up sometimes, but she’s not asleep!  So beware, she is always present, listening and taking in her surroundings.  She can’t see very well or very far, but that just means she can hear the tiniest squeak of a floorboard or the sound of an unrecognizable voice.  Swallowing is tough so there may be some drool but she still likes to taste the applesauce her brothers love or the sweetness of strawberries.  She can’t communicate words yet, but she will definitely let you know what she wants, what she likes and what she doesn’t!  It’s hard for her to walk, but when you see her do it, it will leave you in awe.  The things that are hard for her, aren’t for me, but it has taught me to love and appreciate the differences in everyone, and especially to empathize with others who face a variety of challenges every day. 

Elena was not born with the disabilities she must live with every day, but I know in my heart that inside she is exactly who God designed her to be.  If she was a walking, talking, typical seven year old, I know she would be the same.  Those blue eyes would light up just as brightly and a burp would be just as funny.  As her Mom, I have the unique privilege of knowing her the way I do, seeing her overcome impossible obstacles and continue to achieve what science says she shouldn’t.  Elena, our brought-back-to-life miracle, our shining light, teaches us every day to keep our eyes on what is important, what matters, to keep perspective, to be courageous and to fill our lives with love.  Elena has taught me more about life, myself and my faith than anything.  She is truly a gift. 

It hasn't been seven years of storybook bliss, but they’ve been the most beautiful and love filled of my life.  We love you, Laney girl.  You are our light.  Happy 7th Birthday.

Newborn Laney

1 Year old

 2 Year Old

3 Year Old

4 Year Old

5 Year Old

 6 Year Old

7 Year Old

Jumblings & Ramblings

For the last nearly seven (SEVEN, ahh!) years my life has been a constant roller coaster of grief then joy, darkness then hope, struggle then freedom.  I've cataloged it all here nicely sharing with you all both the tragedy and beauty in life.  I'm proud of my honesty and proud that I've, in a way, shared this journey with all of you.  The writing has helped my brain and my heart in the healing and you all, wow, have been more than remarkable.  You've been receptive, loving, understanding, prayerful, encouraging, supportive and simply wonderful (at least to my face or screen anyway!).  It's been lovely to see how you all, who somehow found your way into our story, have been woven into the fabric of our journey.  No doubt, God has used you to encourage us, as much as we have been a light for you.  

Although the first paragraph sounds an awful lot like a goodbye, it's not.  Don't panic!  It's just that I've been struggling to understand lately why I haven't felt compelled to write like I used to.  In the past, I would always have a 'jumbling' inside.  I would sit at the computer and the words would fly off the tips of my fingertips, spilling all my thoughts and 'jumblings' out onto the screen in front of me.  

It occurred to me the other day that I simply don't have all the 'jumblings' inside anymore.  I guess I would define 'jumblings' as an inner angst or emotional unrest.  It would be a feeling or a thought based upon something I was dealing with that I could only wrap up or conclude by writing it out on paper.  And simply put guys, I'm pretty darn peaceful these days.  Hallelujah.

I had an epiphany a couple months ago.  Fun Fact:  I happen to be the queen of epiphanies BTW, crowned to me by a dear friend who hears all my crazy and loves me anyway.  But, essentially I was sort of becoming my own worst enemy.  Too much in my own head, too wrapped up in all my own feelings, I had been blinded to the insurmountable blessings that surrounded me.  Folks, that's really easy to let happen.  For me, the more consumed I become with myself, my needs, my wants, my frustrations, me, me, me, the more grumpy, frustrated and anxiety bound I become.  I became much less aware of the good, only the things that weren't happening for me.  I was bound by my own self.  Once I realized that, ahhhhhh freedom!  

At this very moment in my life, I can say I'm living in the moment.  I've worked through so much of the trauma of the past, coming to terms with it, and actually being thankful for it.  As for the future, there's far to much fear and uncertainty to dwell there.  I learned that a long time ago.  The only future thinking I do, is planning my next vacation, ha!  The present for me, equals peace.  Don't confuse that with perfection or happiness.  Perfection doesn't exist and happiness is too fleeting to claim.  I prefer peace, deep joy, gratitude and recognition of all that surrounds me each moment.  

I hope this is making sense.  To keep things real, you all should know my kids all drive me crazy at some point every day.  I always have 99 problems...and a million more.  Life is nuts right now.  Elena still has 138 issues going on at all times, whether it be therapy, school, medically or just the challenges we deal with on a daily basis.  Calvin, though such a dear, talks one thousand hours a day and cannot deal when his younger brother pushes his buttons.  And Turner, is hard to put into words (ha!).  He loves big and can make you cry with laughter...and 3 seconds later cry while pulling your hair out.  My nine year old dog discovered he can eat food off my counter tops.  Any my husband can eat a gigantic bowl of ice cream every night and not gain a pound.  My life is just a crazy as the next person, so don't think that even though I am settled, I don't have my own share of afflictions.  

To wrap up my ramblings, ya'll I'm good.  I'm so so good.  Just writing those words is emotional for me because for, like, forever I haven't been good, settled, at peace with the way my life has twisted and turned.  Almost seven years later, the mountaintop is within reach.  Go ahead and remember what it's taken to get here, there's six years of writing, laying brick by brick the path to here.  

This certainly isn't goodbye.  I'm still writing.  There's still more story to tell.  Our girl continues to inspire me and her story continues be an example of God's goodness and faithfulness.   And I love sharing it with you all.  

All three of my littles.  Turner is probably growling.  Elena is sweeter than sweet.  And Calvin is doing exactly what I asked him to do.  All three personalities summed up in one picture.

Elena's Big Pitch

We had THE BEST weekend!  It just so happened to be Mother's Day, too.  A what a good reminder it was for me as a Mom, to live in the present, love the simplest of things and celebrate my precious little family.  

First, a little housekeeping.  I know I've been slacking lately with my updates.  And I'm half sorry.  I'm sorry because I know for many of you, this is the only update you get on my girl.  For that, I do feel badly when I go several weeks without a post.  It isn't for lack of material.  The Hinton Fam sure is busy these days.  But that's also why I only feel half bad.  Ya'll it's exhausting to have three little ones, a life to keep together and try and share the inner workings of my brain along with all things Elena with you.  Most days, by the time I have a moment to sit, my brain goes mush and any inspiration is fleeting.  So as always, just bear with me.  I am trying!

Ok, whew..guilty conscience gone!  Now onto the good stuff!

About a month ago, a friendly staff member from the Ronald McDonald House shot me an email asking if we would be interested in attending an upcoming Indianapolis Indians (our hometown AAA baseball team) game.  It happened to be Superhero Night and a fundraiser for the Ronald McDonald House of Indiana (a cause near and dear to us).  Then, she casually asked if we would agree to have Elena throw out the first pitch!  Ummm, yeah!  All week, I teared up every time I thought of the idea of Elena being cheered on to throw a ball, something she loves to do at home with her brothers.  I was fairly certain I'd been a sobbing mess out there on the field.  Somehow I mostly managed to keep it together.  

The whole experience was magic.  Elena was SO excited.  I was a little unsure of how she would react with all the loud noises (announcer, cheering, etc.) and unfamiliar voices, but she totally loved being a VIP.  She kept her cool the whole time, smiling for everyone that came to say hello and was totally unfazed by the sights and sounds.  As it was Superhero night, we were introduced to Superman and Wonder Woman, whom she casually shook hands with like they were old friends, hilarious!  The boys were mesmerized by the field and the "baseball guys" as Calvin called them.  They wore their capes that the Indians gave them and were excited to cheer on their Sissy.  

As we headed out to the field for the big pitch, they began playing the RMH video we filmed several years ago.  Chad and I pretty much did everything we could to not watch or listen to it as it played on the Jumbotron.  I kept my eyes on Superman (and his muscles), ha!  I knew I would be an emotional wreck if I caught glimpse of any teary eyes in the stands or focused on anything other than making sure Elena threw out her best pitch.  After it ended, they announced us to a roar of applause (a little exaggeration here, ha!).  I helped her wind up the pitch as she threw a fastball (ha, jk) to the catcher.  My cousin was able to catch the perfect picture (see below) of her smile, which reflected the pure joy on her face.  Elena loved every second of it.  I was so proud of her.  It was a memory that I will cherish forever.

We were able to share that moment, not only with the thousands of people who were at the game that night, but with Elena's own cheering section of over 70 people who came just to watch her.  I'm not sure which part she liked more, throwing out the pitch or the 70 of you who came up to talk to her about it and tell her awesome she did afterwards.  I'm so happy to know that we were able to share that moment with each of you who were there, but also so touched by how proud YOU were to see my girl do this.  It was incredible meaningful to have all her biggest fans there.  

You guys, our family is so stinking blessed.  We are constantly surrounded by people who wholeheartedly love our girl, root her on, lift her up all the time.  Our church, our community, our school, our family, our friends, all of you play an integral part of her story.  There is so much goodness in that.  I have been reminded over and over lately that yes, our story is one of heartache and grief and tragedy, but also one of redemption, beauty, mercy and love.  To me, the heartache continues to shrink as I'm able to step back, look around and see all that God has done in our lives over the last six and a half years.  I get to grieve every memory and yet, leap for joy with the slightest of victories, all the while my most precious girl grins her little heart out, shining that light, a reflection of God's love and goodness out for everyone to see.  And so with a pitch, my Elena grows my heart a thousand times and continues to shine her light and her big-toothed grin for the world to marvel.  

The biggest of thanks to the Indianapolis Indians staff and players who couldn't have been kinder or more accommodating to us and our 70 person fan cheering section.  We seriously had the best time and can't wait to head back for another game this season.  Cute side-story here:  Chad was taking Calvin to the bathroom before we headed out on the field.  The bathroom where we were happened to be next to the opposing team's locker room and Calvin's head about exploded when he saw the real "baseball guys" hanging around.  Chad said as they were walking back out to meet us, there was a group of players praying before the game and Calvin said, "Dad, look!  They're saying their prayers!"  Yesterday, we heard Cal in the other room playing, doing his usual starting line-ups (we watched a lot of basketball games this winter and he likes to go to his 'locker room' and do pretend starting line-ups) but we heard him saying his school lunch prayer prior to his announcer voice and about died of cuteness!  Clearly, he soaked up the entire experience!

And of course, our friends at the Ronald McDonald House who work so hard every day for families like ours, who find themselves unexpectedly at its doors.  We love them all and we love this cause.  THANK YOU!

This is the best video and pictures I've received so far, but hopefully will get some official ones here soon.  Enjoy!  

 Elena's big smile post-pitch

Walking For Dreams 2018

If you know our family, you know we have a deep love for the Jackson Center for Conductive Education.  In fact, I just wrote about it in my last post!  I shared how much of an impact it has had on me, not to mention the therapy is actually for Elena! 

I'm not one to repeat myself so you can read my love letter's to this special place HERE and HERE and HERE and HERE and HERE.  But, man, the Jackson Center fulfills so many needs for so many kids and their families, ours included.

Elena has been a student at the JC since she was two years old.  We could never express how much what it has given to her or to us, but we LOVE being able to give back.  We are so fortunate in that we are constantly surrounded by a community who supports us, helps us, prays for us and loves us in every way possible.  You all are so generous in giving not just monetarily, but in your hearts for us.  We are incredibly grateful for this, never taking it for granted, and are always amazed by you. 

We give back to the JC any chance we get, both through their fundraisers and through Elena's monthly tuition.  We know first hand that our donations and tuition go directly into helping Elena and her buddies receive the therapy, motivation and community that the JC provides. They are a small, family-centered organization but they give BIG, with their whole hearts and love, love, love our kiddos.  I can't say enough about these people and this place.

If you would like to contribute to their annual Walking for Dreams fundraiser via (our favorite student ELENA!!) you can do so in a couple ways.

1.  The Walking for Dreams Website....click HERE
              a.  Fill out the form
              b.  Select Individual Walker, then under "Walker" :  HINTON, ELENA

2.  Mail a check to:
          The Jackson Center for Conductive Education
           802 N. Samuel Moore Parkway
          Mooresville, IN 46158

Regardless whether you contribute or not, know we love you and appreciate you loving our family!  I'll leave you with a picture of our sweetie, soaking up the sunshine on spring break a few weeks ago. 

Changing Seasons

Looking at my girl, I'm coming to terms with the fact that she is growing up.  I've had several moments of late where I stop, look around me, and think - where has time gone?  Elena is closing in on seven years of life - SEVEN!  She looks every bit of it too.  This realization has had me in a perpetual state of wonder and reflection.  How did we get here?  What happened to TIME?

Following Elena's injury, it was like someone had take our life, crumbled it into a million pieces, shook it up in a bag and handed it back to us with assembly instructions in Mandarin.  There was so much time spent sorting through the grief, piecing our life back together again and in fear of what our future, what Elena's future would look like.  It breaks my heart to think of our naivete at leaving the hospital with hope that Elena would "wake" up from the medication she had been given, and settle back into the "old Elena".  I knew in my heart she would never be the same, but as a Mother how do you come to terms with that?  You may remember that we clung to Ephesians 3:20 "Now to him who able to do immeasurably more than we could ever ask or imagine according to his power that is at work within us."  I was certain this meant recovery, healing, restoration for my broken baby girl.  

Those early days I worked with Elena around the clock.  We were constantly going to doctor appointments, therapy and if we weren't doing those, I was doing therapy with her.  It was overwhelming and a rollercoaster ride of emotions.  But, I began to really understand her.  I was learning my daughter, soaking up information about her vision impairment, GI issues, muscular struggles and bone development.  Though this role gave me purpose and hope, I often found myself in tears, feeling much more like therapist and manager than Mom.  

Then came the Jackson Center, it became my sanctuary.  It was a place where kids were like Elena and the other Moms understood me.  I could ask a hundred questions and listen to the wisdom and compassion from the other Moms who had been in my shoes, comforting me and quelling my fears.  That was such a critical time for me, it was a time where I began to accept that Elena's life would not look like the one I had dreamed.  I was learning to both grieve that and be ok with that.  While Elena performed hours of grueling therapy, I would have a little bit of therapy myself.  

Somewhere over the course of this time, I found (one of many) a miracle.  Peace.  I'm not sure that I ever once prayed for peace over this situation.  But, then again - Ephesians 3:20 ".....more than we could ever ask or imagine".  Granted, I would give anything, ANYTHING for my miracle to have been for Elena to be healed.  And it will be my forever prayer to see her continue to achieve.  But, this recent time of reflection has given me perspective, which if you've read anything I write, I am a firm believer in the incredible gift of perspective.  And this bout of perspective flows from the peace that is within me.  

I will forever grieve the expectations I had for Elena's life.  I will forever grieve her struggles, our struggles as a family over her injury.  I will forever have good days, hopeful days, joyful days and angry, fearful, cripplingly sad days.  But the resounding beat of my heart lately has been peace.  I am at peace with my beautiful girl, just the way she is.  This doesn't mean I'm not constantly searching for ways to help her, make her life easier or pushing her to achieve.  It means that this life, her life is meaningful and rich and fulfilling and lovely even in it's broken form.  

It feels as though a new season of life is ushering it's way in.  Oh, I'm still in the trenches with her wild and crazy brothers, schedules, and such, however I'm settling into a better rhythm.  A more stable one, a more hopeful one, one with loads of perspective.  Being a sharer by nature, I feel like it's positioning me to be able to be more generous in supporting others and paying forward the experience that all those Moms helped me (and still do!) with along the way.  And there is just so much darn hurt in this world to help. 

My days are long, my to-do lists longer, and there always seems to be a kid who either needs something or needs to be cleaned up after.  But as I crawl into my bed each night, there's an inner satisfaction with this wild, difficult, fulfilling, joyful life of mine.  I never could have imagined it this way, or honestly, nor would I have wanted to, but that's the how the beauty of my faith works.  I put my trust and hope in something bigger than me, my circumstances, my control and my failures, and somehow, inexplicably (but actually very explicable) in the end, it gets redeemed.  My heart gets changed over and over and over again.  Fear and anxiety get replaced with peace.  Despair and heartache with joy and gratitude.  And the promise He made to me in Ephesians 3:20 will continue to reign true again and again with more blessings than I could ever ask or imagine.  The best of which, to spend each day with my living, breathing miracle, who is and always will be my greatest inspiration, my Elena.  

Coming Out of Hibernation

This may be the longest hiatus to date I've taken from sharing with you.  I wish I had some terrific announcement or news to update you with, but really it's just been life.  You guys, I'm having trouble lately catching my breath.  I don't like it.  Everything is whizzing by and I feel like I have hardly a second to interpret it, before it's like three weeks later.  I hate talking about how busy I am, because newsflash, everyone is busy!  But my busyness feels hollow and lackluster.  I'm desperate for inspiration, for insight, for anything other than going all day and hardly being able to keep my eyes open at 8:02pm.  Who am I?  Where am I?

Since January, my last post (eeeeeek!), I can hardly come up with one legitimate thing to share with you.  The boys and I took off for Arizona for a week in mid-February to spend some time with my parents and the sunshine.  But that's it.  Isn't that terrible?  It's like I have no idea how I've arrived on March 8th.  Part of it, I know, is just this season of life.  I'm needed A LOT.  Sometimes that's endearing and affirming and other times it's suffocating and straight-up annoying.  Finding balance between those sets of emotions can be tough.  In the midst of that, I'm constantly looking for inspiration and perspective.  It's not always to be found or better yet, I'm too tired to articulate it! 

I know you guys get it, many of you are in it with me, some of you have been through it, but I appreciate the grace nonetheless. 

For now, I'll leave you with a quick Elena update.  In the next few weeks, Chad and I will be meeting at school to revise her IEP (Individualized Education Plan) for FIRST GRADE.  I'm dying a little when I say that.  With two years of Kindy under her belt, she's pretty much a pro!  Ha!  This year has been much better for her, not without it's own set of challenges and struggles, but we've been much more confident in her time there.  You guys, she's huge.  Her legs are like a mile long and her sweet, chubby baby face is growing into a bright-eyed, beautiful girl one.  All eight of her front teeth have been replaced with adult sized teeth, which is still insanely adorable, but gone are the days of her gap-toothed baby teeth.  She's still as happy as can be, laughing when her brother's get in trouble or start to cry, and squealing in delight when it's loud and chaotic.  She still loves music, school, her therapists and being told she's pretty.  We remain encouraged about all the possibilities for her future and all her achievements.  But, she still has her struggles.  Her little body can be so frustrating for her and for us, as we watch her light up with intent, then struggle to act.  We are still praying and believing in a solution for her to easily communicate with us.  Patience is a virtue in life and especially on this road we walk with her.  But, we continue to trust God and her team that we will be led to just the PERFECT device/routine/adaptation for her.

You guys, the best part is seeing every day how ridiculously, utterly, totally loved and adored this girl is.  Not just by us but by friends, family, classmates, teachers, therapists and anyone who sees her big hair bow, glittering blue eyes and toothy smile.  Just this week, two of her little friends at school painted her a picture and hand-made her a coloring book.  I emailed her teacher to ask if they were specifically for Elena and her reply was YES!  The girls in class simply adore her!  This confirms to me, that even though my precious girl is without words, everyone is drawn to the light that shines from her.  This makes me beam with pride and comforts my heart to know how loved and appreciated she is.  What a gift! 

Happy girl.

Being silly with one of Calvin's Valentine surprises!

Standing tall with Miss Polly (her PT)

Being Brave

One of my resolutions for 2018 is to get back to daily quiet time, even if it's just 5-10 minutes. Using that time to be still, read a devotional, pray, just be present, journal, whatever it may be, it's such a good practice.  I find myself so much more engaged in my faith and those around me, when I have that time each day.  I recently began a devotion called "100 Days to Brave" by Annie Downs.  It's all about being courageous in our daily lives. 

I wouldn't describe myself as a particularly courageous person, but I would admit to being brave or oblivious (ha!) during certain times of my life, whether I knew it at the time or not.  I'm only on day five of one hundred but I've already been convicted of a few recent times when I SHOULD have been courageous in my truth, and I wasn't.  It's left me with a little nagging feeling in my spirit that has totally humbled me. 

Yesterday, I was with two women whom I had just met.  They saw all the adapted equipment we had in the house and asked about Elena.  We got to talking about what happened to her, what we went through and the conversation became more than I usually share when I just meet someone.  But the conversation came easily and I wasn't overly emotional about it, which doesn't happen very often.  Then came my moment, she blatantly asked me, "How did you overcome all the anger?"  Softball lofted up for the homer, Emmalee.  Moment to share! (see Dear Melissa).  Moment to share my truth.  Moment to say a zillion things.  That my peace consumed me one day sitting in church.  It was a "God thing".  I forgave her.  I was given the strength to overcome the impossible because of my faith.  I forgive, because He forgave me.  It was just one of the miracles that we've experienced along the way.  I'm freed from the anger, resentment, bitterness.  Ephesians 3:20.  Anything.  Instead, I said something vague about anger eating you up and not affecting the other person.  Ugh.  So cliche. (eye roll). 

Immediately, I was embarrassed with myself.  I had the opportunity to share with someone my truth, the heart of our story, and I didn't.  I was tested and I feel like I got a big, fat F.  I'm such an open book, why was I not able to be honest about how I overcame that, how I overcome anything that comes my way? 

Sharing my faith, outside of my writing, isn't always easy for me.  It's clear to me now, that this is an area of opportunity for me, an area that clearly needs improving.  My faith is the center of who I am and if I can't share that with someone WHO LITERALLY ASKS ME THE PERFECT QUESTION, I stink.  Honestly, there have been several opportunities I can think of, when I could've shared and I didn't.  Maybe I took the credit.  Maybe I didn't say anything.  All of it the same. 

God gifted me with the ability to express myself and an openness that makes me a 'sharer' or perhaps, an 'over-sharer' at times.  Mixed with what we've been through, it's obvious to me that THIS is my opportunity.  THIS is what I need to share.  Because once you've heard our story, (at least in my opinion), it's pretty dang tough to not be able to see that there is something deeper, greater, purposeful behind everything that has happened and our resiliency through it all.  That doesn't come from me or Chad or any super human strength that we have.  My hope is rooted in something bigger.  It's not my 'religion' (blech, I hate that word), it's my relationship.  I am who I am.  I've survived what I've survived.  I have hope always because of what I believe.  Nothing could give me the peace, resolve, strength, joy, or hope that I have, other than God.  It's so good that I can't believe I don't tell people all the time. 

Having lived a major life trauma has given me a great empathy for anyone who is enduring something really difficult in their life.  Whether it be a friend, acquaintance or story I hear on the news, it always hurts my heart because I've been there.  Dark times, valleys, are all painful and scary and sometimes hopeless.  I've been there.  I probably carry other people's burdens and hurts more so than I should.  It's like if I can make it, I want to encourage you to know that you, too, can make it.  Know that I pray for you, I think about you, and I hope to be courageous enough with you to tell you why I made it through and I know how you can too.   

For the next 95 days (well, and forever after that), my goal is to be brave.  Be brave in my truth.  Be brave in my story.  Be brave in my faith.  I can't promise no more missed opportunities, but God knows I'm not perfect.  It has certainly been made clear to me that this is an area I need to work on.  I'm listening.  I want to be your cheerleader.  And I want you to be courageous in whatever you're facing, too. 

A Hopeful 2018

All in all, 2017 was a good year to us (no surgeries!  Italy!  Travel!  Chaos!).  Compared with the previous couple years, it was just what we needed, a vast plain.  Very few valleys.  We would've taken some mountain tops, but I was totally content to just put on cruise control for a hot minute and just be.  Sometimes I feel like I'm faring pretty darn well if I'm only just cruising...and that's ok! 

Elena ended her first year of Kindergarten, and then began another year of Kindergarten, ha!  Calvin continued to be my little helper and keeps us all laughing.  Turner celebrated his first birthday and took his first steps.  Chad and I had our 8th anniversary and felt pretty pleased with ourselves, surviving a year with three kids.  We kept everyone alive.  He may have lost a few more hairs and I have, perhaps, a few more wrinkles.  But, the Hinton family always feels grateful reflecting upon another year past and ALWAYS looks forward to the next with hope of what we will achieve, what we will make it through, and the memories we will make along the way. 

I'm a planner by nature so I like to visualize the year ahead, think about our plans and schedule, schedule, schedule.  As Elena begins her last semester of Kindergarten, my heart can't help but ache over the challenges we continue to face.  School has been such a blessing to her and to our family, but the missing piece, finding Elena's voice, has proved increasingly difficult.  She was doing really well for some time, with some basic communicative skills.  Whether it's frustration, stubbornness or her telling us something (by not communicating, ha...does that make sense?), something has changed and has left us all scratching our heads.  I know this is one of those things where it's totally out of our control.  And what we can control, we (and her team) are doing everything possible but it seems like I mutter this prayer all day every day.  Please God, help us to find my little girl's voice. 

I carry the weight of that every day.  And even though I trust that this will happen, this prayer will be answered...the waiting is the hardest part.  To 2018 I look.  I look ahead with hope that this is the year it will happen.  It reminds me of a song, "I will look back and see that you are faithful.  I look ahead knowing you are able."  I know it's true.  I've lived it the last six years on our journey with Elena.  So, I cling to it entering a new year with new possibilities and hope, hope, hope. 

Whatever you're carrying into 2018, either with a heavy heart or one full of hope, we all have our burdens and struggles.  There's always hope.  Even if it seems impossible (hello, getting a non-verbal child to communicate?!?).  Even if you have no idea where you're going or what path to take (um, me too).  Even if the burden is so big, you want to give up or walk away from it, everything is possible.  Hang on to hope.  I know I am. 

I took this picture yesterday (thankfully I was cut out).  The boys and I cuddled up in Elena's bean bag watching a show.  I snapped the selfie, went back to look at the picture, and that's my girl.  I could've chalked it up to coincidence.  I could probably google some photography lingo to explain why the beam of light was captured.  But I know.  I know how my heart has been feeling.  And I know God uses all kinds of ways to encourage us and quite simply, my heart needed encouraging.  I needed to be reminded that she IS a light.  That she IS a living example of God's love, mercy and hope.  Her struggles are enormous, our struggles as her parents are sometimes enormous, but He is faithful and able and I both have lived that and believe it.  And her brothers, who love her unconditionally and who are oblivious about her differences is an example of how we should see everyone as perfect as they are, make me so proud.  I have hope that they'll grow up to be advocates for her, love her, care for her and be changed because of her.  One little picture, so much hope.  Cheers 2018.