The Power of Sharing

Hello Friends! 

I haven't forgotten about this little space of the world I carved out for myself 8 years ago.  It may be a little neglected lately but it still speaks to my heart and serves as a snapshot of a very difficult period of my life that I walked through.  More importantly, it was a way to connect to all of you who have followed along with our journey, as I worked to rebuild a life that was turned upside down.  I haven't forgotten any of you!  Your support, whether it started day one or you're just now finding us, has meant everything.  I've often hesitated to put myself out there with my writing, but each time I got nervous hitting the 'publish' button, you always responded with graciousness and kind words.  It's been so uplifting to feel supported by all of you, truly an integral part of my healing process. 

I'm obviously not writing much here anymore, but it doesn't mean that I'm not still writing!  I've been writing pretty frequently, still processing everything I walked through these past eight years.  And news flash, still unpacking unresolved feelings and realizations.  It's been really cathartic and has given me a clearer vision for my future.  I hope to be able to share the nitty gritty details of all that I didn't share here with you all, someday.  I have more story to tell and hopefully more truth, love and beauty to share with the world.  Connection to each other is the real inspiration here, and no matter how we do it, via the internet or in person, it can all be meaningful and real.  Elena is my inspiration in life and it gives me true joy and continued healing to be able to share her with you. 

Awhile back, a friend from college reached out to me asking if I would be interested in interviewing with her on her (and her friends') podcast.  I immediately said yes, but acknowledged flutters of doubt and fear over actually speaking publicly.  I much prefer to write, purging all my feeling and thoughts in print where I feel I'm best (and more comfortable) at articulating.  As the interview neared, my fear and doubts in ability and qualifications threatened to consume me.  I prayed for peace and confidence but when Emily showed up at my door step a couple weeks ago, I was admittedly terrified.  Fortunately, I knew her and she's always been genuine, warm and thoughtful, therefore I trusted her.  My hands may have been shaking the entire interview, but once it was done, I felt more than relief.  I felt a deep, deep gratitude.  I realized that no one, for the most part, had ever asked me deep, meaningful questions outside of what actually happened to Elena.  I was so fulfilled being able to share my journey of discovery and healing, rather than the devastation of her injury.  Emily's questions were gentle, yet purposeful and deep, which I truly appreciated.  I had stepped entirely out of my comfort zone, but on the other side I found it wasn't so scary, another learned lesson to tuck away. 

For those of you who have already listened to the interview and responded to me, gosh, thank you.  I was terrified the morning it came out, and you all made me feel, once again, supported and appreciated.  It is tough to put yourself out there, and to be met with your sweet messages of encouragement, appreciation and connection, in turn, makes it all worthwhile. 

As Emily said, we both believe strongly in the power of sharing our stories with others.  I still believe in that power, and this most certainly confirmed that.  There is power in overcoming fear, speaking your truth, and making a small ripple of hope and encouragement in an often times, hopeless world. 

Share on, friends.  And I will too.

You can listen to my interview with Emily from The Illuminate Podcast by clicking HERE.  I'd encourage you to listen to some of their other interviews, which are equally inspiring (hence my feelings of under-qualification!).  Love you, friends.

A Purpose Found

This year there was no dread.  There was no clenching of my insides.  My mind wasn’t transported back to those dark, fearing moments.  My heart wasn’t wrenched in pain.  No, this year has simply been memory.  A memory of the worst day of my life that deserves its due recognition of just that.  Perhaps it’s just the passage of time.  Perhaps it’s the hard-earned efforts of a journey I was set upon that day eight years ago.  Or perhaps it’s purpose.

From the very beginning, it’s never been about that day, the what happened, as traumatic as that event was.  It has always been about her.  How we were to move forward as a family.  How we were to pick up the pieces of our shattered life and put something resembling a life back together.  How we were going to adapt our lives to her needs.  But in the past, this day has always been the stinging reminder that we had a before with her, a blissfully naïve life of endless possibilities, and then that terrible day when our world fell apart.  This year, the reminder is there but the hurt feels more like a scar across my heart rather than an open wound. 

Eight years.  Eight hard-earned years of life, of course, with moments of joy and happiness and all the goodness of life, but mostly a time of grief and learning to navigate a life I didn’t choose.  This past year, however, has been the greatest of my life.  For no particular reason I suppose.  Maybe because I’m settling into myself.  I’ve worked through so much pain and sadness and adversity and am finally reaping the benefits of clarity, perspective, gratitude and yes, purpose. 

Last week at church, I heard a sermon on greatness.  What defines it.  How you achieve it.  And he quoted something that settled into my soul like recognizing an old friend.  He said, “Impact requires sacrifice.  We want maximum impact with minimum sacrifice and we spend our lives negotiating between the two.” 

I’d be willing to declare I have endured maximum sacrifice, and well, my impact, Elena’s impact is yet to be determined.  But here’s what I do know.  She is my purpose.  Being her Mom, being her voice, sharing her story, and sharing mine is my purpose.  God created me for this time in my life.  He equipped me with what it takes to fulfill what I was put here to do, and that is to share.  Who listens doesn’t matter, but it’s me putting our heartbreak and our healing out there for people to make of it what they may.  They can take of it what they can and hopefully inspire people to keep pushing through this ride called life.  We all endure suffering, but it is what happens during and after the suffering what matters, what determines the impact your suffering will make. 

I’m only in my mid-thirties, my life’s purpose hasn’t exactly been at the forefront of my mind.  I was only 27 when Elena was injured.  I had barely begun my adult life.  Even so, I wouldn’t say that I’m the kind of personality that determinedly seeks one’s purpose in life.  But, over the past year the settling of my soul, the clearing of my heart and mind has left but one constant, the desire to share Elena’s story, my story and the encouragement that can only come from surviving the worst.

And so, year eight, I rest in this place.  A place of peace, of contentment, of goodness and of gratitude.  I’m reflective of what mire I have waded through, grateful to look into the beautiful, blue eyes of my precious daughter, privileged to care for her, to be her legs and arms, to be her voice, to share the miracle of what she lived through and who she is.  Finding my purpose in her is not only freedom from the chains of the past, but the greatest honor of my life. 

Happy Birthday Elena!

Friends, I know it's been awhile.  For me, it's been refreshing.  I haven't felt the obligation that the blog was beginning to feel for me.  What started as a sort of journal for me and a way to update those who were following Elena's recovery, began to feel like a chore.  My writing needs to be inspired and fortunately for me, I wasn't being compelled to write and share in the same ways that I once had.  That's good for me, because I feel like I can once again breathe.  I'm not gripped with emotion, battling my way through every day like I once was.  And friends, THAT'S GREAT NEWS!  For all of us, who have battled, are battling or will battle in the future...it ends.  And life gets sweet again. 

Life is sweet today because we celebrate yet another year with our best girl.  Today is Elena's 8th birthday.  She's big, you guys.  She's tall, skinny.  Her face has thinned from what once was a chubby-cheeked, baby-toothed smile.  Sweet little freckles now dot under her eyes and across the bridge of her nose.  Her little baby teeth have been replaced (and are still coming in!) with big, too-big-for-her-smile teeth.  Though she's growing, she's still just as sweet, just as funny, just as snuggly.  In spite of whatever pain exists at the knowledge that she will never grow and change like my boys do, a giant swell of love swoops up to envelope me when I think of cuddling her forever or my definite future of Disney songs on repeat always.  Our road with her is different.  Some days it's painful and other days a special gift I get to think upon. 

But today, she's 8.  She will be a second grader in just a few weeks, surrounded by her unfathomably inclusive and loving peers and teachers.  We will celebrate by bowling later this week, a new-found source of excitement for her.  Her therapies continue.  Her physical challenges continue.  But so does the joy she brings to our lives every day.  So do the lessons in patience, acceptance, love, kindness, problem-solving, resiliency and a million other things I've learned along the way.  Though these life lessons I've learned and pray my boys learn have been beneficial, she remains the gift.  She will always be the gift, the reminder of God's goodness and mercy and faithfulness.  Whatever I face in this life of mine will never compare to what she overcomes every single day.  Seeing her grin, hearing her laugh, watching her succeed is worth every tear that has been shed over the last eight years. 

My sweet little girl.  My Elena Catherine.  The one who taught my heart to beat.  You are so loved.  You are so valued.  You are the most precious gift.  Happy Birthday my darling.

Seven Year Storm

This road I've walked for the last seven years, many of you right along side me, has been a roller coaster of ups and downs, gratefulness and grief.  It's hard for me to go back and read some of my old posts, some of my old journal entries.  The ones where I remember clawing, scraping, searching for whatever shred of hope I could at the time, always wondering when it would end.  When would the grief, heartache, utter difficulty of processing this life would fade into the background and emerge into the sunlight, coming out of the wilderness?  I mean, I'm not sure if I'm there.  But maybe it feels that way?  Seven years of emotion-ing, comprehending, figuring, okay-ing feels like I've put in my time.  I can close the door on that, right?

The last few months, my mind and my heart have been rewarded with a time of ease, an overwhelming peace, really.  I've felt myself emerging from the fog of seven years of everything listed above.  And man, it feels so very, very good.  As my girlfriend put it yesterday, it is finally freaking well with my soul.  I haven't exactly nailed the "why?" yet.  Why all of a sudden life feels really good, settled, fulfilled now?  But to be honest, I don't care.  I've wrestled with the "why" for a very long time and some part of me always will.  And a big part of me knows "why" is the worst question ever, because there's never an answer or good enough answer, no matter how much searching goes on.  I'll accept this generous gift of peace and contentment with pleasure, no questions asked.  (For now.  Ha!) 

I feel an immense gratitude for this.  It's true.  When you've walked through seemingly never-ending valley that I have, the mountains are so, so sweet.  This mountaintop isn't even remarkable or exciting.  It just feels like peace.  I always pictured mountaintops to be when something amazing happens to you or everything is going right in your life.  I'm beginning to think it's not that dramatic.  Just a settled sense of satisfaction, perhaps.  Or maybe an opportunity when you aren't fighting something and your heart can process the goodness of your life, instead of the difficult circumstance.  Actually, I hope that mountaintop looks more like a mesa!  A nice flat surface at top that lasts a good, long while before the ground gives way again.  I know there are always rocks to navigate, either up over the top or to swerve around, but a peak nonetheless.

With Elena, there are always rocks in our path that look like heartaches, suffering, difficult decisions to be made, medical issues she faces.  A bumpy ride is a 100% guarantee.  For the most part, I accept that, though it still stings.  I am still learning and trying to understand how different our lives are from most, outside the obvious physical and emotional challenges of having a child (who is growing longer and bigger by the day!) with special needs.  It is woven into our every day lives and into every single decision we make.  There are a plethora of ways this both directly and indirectly affects our lives.  There are tangible, expected ways and there's emotional hurts and realizations you would never know.  It is a driving force in our lives, but we know that and (most days) we accept that. 

In other words, life ain't perfect.  Everyone knows that.  I just want to be certain I'm honest.  Despite whatever good, Instagram-able, rosy picture I paint, it's not perfect.  It may be those things, but I've still got probs!  Just fewer, less, "a bomb went off in the middle of my life" probs.  I hope this is a comfort to someone out there.  Like, hey girl....I just endured seven years of you name the problem it probably happened to me in some way, shape, or form....I get you.  I can relate.  It's really hard and really sad and really miserable.  Find the good in the storm, no matter how ridiculous or small.  Hang on and ride it out.  It ends.  It always does.  Even better, write it down for the world to see (or maybe just in a private journal!), and it will eventually give your pain a purpose.  For me, writing it got it out, marked my place, my battle and looking back, helped me see all the answered prayers that I didn't even remember praying.  I still try to recognize the answered prayers, no matter how small they may be, and use that to push me forward with gratitude and confidence that I am being heard and I'm not alone. 

The last couple days my heart was heavy with the reality that Elena has to endure so many challenges.  Specifically, how her little body fails her all the time, wondering how this feels and if she suffers.  Her muscles are tense and often immovable.  She is unable to really communicate with us other than basic expressions.  There's so much interaction she misses out on because of this and because her body struggles to perform the simplest of movements.  Relationships with peers, with us and with her brothers can be tough.  Yesterday, God cut away the sadness in my heart during Elena's weekly PT session.  Unprompted, both Calvin and Turner joined Elena for most of her session, practicing sitting, taking steps, doing her stretches and tummy time, all while cheering her on and demanding her PT to HELP HER! when she struggled with something.  To see them with her, beside her, helping her, cheering her gave me the glimpse my heart needed to see, the connection, even without the understanding.  What a win this was for my heart.  What an answered prayer it was, that I didn't remember praying. 

Practicing sitting

Tummy Time

The Present

Happy New Year, friends! 

In it's usual fashion, 2018 ended lightning fast.  A week into the new year and I'm still trying to unravel 2018 and settle my thoughts for the next.  Mostly, we ended on a high note.  December presented it's predictable busyness, but for whatever glorious reason, the holidays were (dare I say?) pretty darn enjoyable this year (save for a disastrous family "fun" trip to ride the Polar Express).  In years past, I've found myself upset with the difference between the amount of work put in versus the enjoyment received.  I beginning to think that season of post-baby hormones, the constant needs of three small children, and sheer exhaustion may have begun to change for me.  And I'm ok with that.

I recently read a Joanna Gaines quote that really resonated with me.  She said, "It's always been my nature to reflect on the past and linger there a while.  I find myself thinking about what I will miss and how life is just moving too fast."  Truth, girl.  She goes on to say, "I'm challenging myself in this new year to live for now.  The present.....not thinking about how the good ol' days have passed us by or how the best is yet to come.  But that right now, this very second, this is the gift.  These are the days.  These are the moments.  And I'm gonna breathe them all in.  If there's pain and sorrow, or happiness and hope, let it in and then let it out."

I mean this is how we should all live, right?  Easier said than done, I know.  However, I can't help but feel so strongly about this right now in this moment of my life.  In the past many years, each year has felt like a new chance for there to be more good in my year than bad.  To do loads of sorting of emotion, healing, moving forward, learning, struggling.  Our family has endured our fair share of heartache for many of these years, yet we have emerged together.  And for once it feels nice to not necessitate a deep period of reflection, sentiment and hope.  It feels good just to be. 

For many of you, I know you aren't looking at 2019 with as much optimism or maybe you're just in the thick of a place where all you want to is to look towards to future for hope, or even to the past for when life was better.  But, I've been in all those places.  Wishing things were the way they were, and hoping for better ahead.  Miserable places to be quite frankly.  So, I recognize when life hands you the great blessing of "enjoy the now" and you're actually able to do so. 

There's sure to be difficulty.  If there's anything I know, it's that.  Each day there is difficulty.  Most days there is some level of heartache.  But, I have resolved myself enough now to be able to see beyond that.  I let those things sting me for a moment, cry if necessary and carry-on.  I'm learning to fill my heart up with the giggles, the kisses, the sweetness of babes at 7, 4 and 2, the goodness that God has gifted us with, the difficulties that we DON'T face and let that override the momentary stings of grief or anger or frustration. 

I don't know what your hope is for 2019.  And I'm incredibly sorry if it's a bleak outlook, or a wishful longing back.  But know this, seasons change.  The hurts lessen.  The joys grow.  The resolve comes.  It may take a year or two (or seven) of forced optimism but it comes.  It's never perfect but it's a gift when you can look back with gratitude to the fire you walked through to arrive in the beauty and awe of the present. 

To 2019.

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.