The Never-Ending Story

I know I have been absent in the pages of this cherished blog.  For many reasons, but mostly because, over the course of the last 18 or so months, words have poured out of me.  I had to get our story, my story out of me.  The flood gates opened and before I knew it, 250 pages telling the good, the bad, the ugly and the entirety of my story start to “finish” was, well, finished.  Since then, I’ve been sitting on it, pondering my options, considering the immense vulnerability this would require, and having, at equitable intervals, much confidence and much (MUCH) self-doubt. 

While all this internal dialogue was happening, I began to have this bubbling of realizations emerge from within me.  I had filled many of the pages of my story with feelings and confidence over the “resolution” of my journey.  Over the years, I have put in so much freaking work to wade through the muck of what began that day in November and the millions of repercussions that trickled into my life and my psyche since.    Having written much about the last nine years, I’ve only recently begun to lack confidence in my emotional and mental resolutions.  I had written myself into those pages to be ok.  Resolved.  My trauma, my healing, my next steps all tidied up into a neat little package.  Lately, that hasn’t felt true.  My story, I’m understanding, will never be neat, tidy, or most of all, gulp, resolved.

Over the course of the last month or two, I’ve experienced an unexpected tsunami of grief.  A few mostly uneventful but contemplative scenarios were set forth in front of me that left my head spinning.  One, a minor medical procedure Elena had turned out to be incredibly painful….for me.  And second a benign event that offered me a look into our future in caring for Elena (which I mostly avoid at all costs).  What these two combined experiences were successful at doing, was opening this great chasm of grief inside me, spilling out into the pages of my journal.  A couple weeks ago, following Elena’s procedure I wrote this:

"Like so many times before, I sat in a sterile hospital room steeling myself against all emotion.  Swallowing lump after lump in my throat, my eyes burn with tears, as I stare at the fluorescent lights above begging my them to dissolve themselves before spilling down my face.  It’s a scene replayed every damn time I’m in that hospital, every damn time I spend an hour detailing Elena’s current issues with doctors in hopes of some relief or resolution.  Just make it back to the car, Emmalee.  That’s what I tell myself.  Don’t fall apart in front of them, Emmalee.  Make it to the car.  Don’t make it about you.  Focus on Elena.  You’re almost there. 

I always make it to the car, thankful for a vast and dark parking garage.  I slide into the driver seat as the sobs finally are freed.  I follow the signs for the exit through eyes blurred with tears.  This is my routine.  I give permission to feel, to release, and be angry.  Because every time I’m angry.  I’m mad that this is my life.  This is her life.  That I have to do this.  That I have to watch this.  That I have to see my daughter subjected to pain, to prodding, to injections, to surgeries, to tube feedings, to grueling therapy, to endless medications, to diapers, to having decisions made for her always and forever, to wondering how she feels about something, to answering questions for her, to picking out braces and wheelchairs and standers and strollers, to this life that we live together.  It isn’t fair.  It’s cruel.  It’s impossible.  It’s heartbreaking.  Every damn time.  I cry for all of this.  Every damn time."

In the weeks since I wrote that, I have been grappling, almost incredulously, at my inability to pull myself together. Usually I’m able to get it out, purge the pain and move on.  But a week later, I cried through lunch with a friend.  The next week my best friend called and I broke down immediately in sobs.  I couldn’t fill Chad in on my day without crying into his shoulder.  Why was I constantly crying?  Where was this coming from?  Why couldn’t I just choose joy?  Get a grip, Emmalee!

As if the light switched back on, I realized my old companion grief was standing right in front of me.  I was in the dark because I didn’t want to acknowledge that it was there.  I was afraid of falling back into the grief pit.  I was trying to outrun what is, in reality, a part of me.  There is this constant incongruence in my life, joy and grief, each a magnet trying desperately to pull me to one side or the other.  My recent days have felt like one of those ambiguous optical illusions that hold two different images in one.  Do you see the duck or the rabbit, the two faces or the vase?  Each day, two images, one person.  One that consciously chooses to see the joy, the abundance.  And the other that, at times, is utterly devastated by overwhelming grief.  Both exist together, within me.  Both create a frustrated wrestling back and forth.

Call me Captain Obvious, but somehow I only recently realized this….that my grief is forever.  Like forever, ever.  For whatever reason in my head, I believed with the “acceptance” of my life and my ability to feel at peace with it, the grief would fade or only lightly and delicately, with the best manners, reveal itself on occasion.  It had, I guess, never occurred to me that with every new phase of Elena’s life, with every new transition, with every new adaptation, with every new realization of what will never be, with every stark difference between our reality and everyone else’s, it always be my companion.  A forever friend that will take my hand and make me remember that my heart will remain broken, forever. 

Maybe I had some understanding of this concept in the last few years.  Perhaps I shouldn’t be so surprised by this and that when the wave comes, it hurts all the same, but I am.  It catches me off guard every time.  And every time it takes me a minute to turn the lights on and recognize what grips me.  Ohhhhhh yeah, ‘sup grief you’re back and you’re annoying.  Then resumes my internal struggle between living my life with joy and gratitude and giving recognition to the pain that exists there too.

Part of my healing continues to be learning to reconcile these together, to accept both, to understand that the opposing forces will always be opposing but I must learn to exist with and acknowledge both, because both are entirely deserving and both are entirely, me.  When I allow myself to acknowledge it, feel it, let it swallow me, it gives me a feeling of validity.  That my life, my experience, my feelings are real and worthy to be mourned.  Grief in, cruel, ironic way, affirms me.

There was a quote on Brene Brown’s Instagram page recently, “Grief requires witnessing.  The need is for someone to be fully present to the magnitude of their loss without trying to point out the silver lining.”  I’m totally a silver lining girl, but it’s also necessary for me to remain honest about the challenges of my life and allow myself room to mourn the losses I experience daily.  The grief can also serve as a baptism of sorts for the routine that my stride can fall into.  It washes away the parts of me that pretend everything is normal and even and monotonous, reminding me of the importance of my loss, my challenges, what will never be.  It’s a constant perspective shift.  By sharing my grief with others, I feel more authentic and honest, which I believe creates connection.   I’m not always ‘such a good mom’ or ‘so strong’ or ‘so inspiring’.  I’m human and I fall apart.  I lose it in my car.  I want you to bear witness that my road is not one of overcoming a trauma, a major life obstacle.  It’s overcoming obstacles every single day.  It’s a perpetual cycle of me falling apart and pulling myself together.  When I feel as though I’m falling apart, and I have to navigate with a brave face, it reminds me of all the others out there who must do the same.  Better yet, it prompts me to send silent prayers for those who cannot even muster a brave face, who can’t make it to their car in the parking garage, who can’t smile for the picture.  Grief can offer itself as a connector, not always an isolator.  Valuing both the abundance and the grief, both pictures of my life, seeing the ‘duck’ and then also looking for the ‘rabbit, doesn’t create a ‘resolved’ ending, but rather authentic opportunity to navigate whatever lies ahead. 

Does this seem exhausting to you?  Because I cannot begin to tell you how exhausted this makes me or how ridiculous I feel for thinking for one moment that my chapter of grief and pain and heartache were mostly a thing of the past.  But I guess that is what this life is for, living and learning and preparing yourself to do better for what comes next.  And, as for what does come next, I don’t know.  I have a story that I’m still figuring out how to tell.  When I do, I’m certain it will be the most authentic version I can offer. 

Nine Years Later

    I’ve spent the better part of a week trying to articulate what was circulating inside me.  I wrote paragraph after paragraph of emotions that were authentic to how I was feeling, but it never just felt totally “right”.  I was missing something.  Tonight, I felt the dam inside break.  I held my head in my hands and felt the tears slowly work themselves out. 

    I’ll be honest.  This day, November 3^rd, doesn’t always feel this hard.  It truly is a day of mixed emotions.  But this year, for some reason, it’s felt different.  There’s been this persistent nudging the last few days that has left me teary at times, prompting flashbacks, and left me wondering why it’s been a struggle. 

    And then, it made sense.  It clicked in my head. 

    It’s never the day itself.  Despite the sheer tragedy of that day, when the anniversary rolls around, I usually find myself full of gratitude for the sparing of Elena’s life, for all the good that has emerged in my life as a result, for the faith on which I’ve relied, for the strength in which I’ve found.  I truly am grateful for this journey I’ve been set upon.  It has wholly changed me, top to bottom, inside out.  That day, nine years ago, I was cracked open, the shell of old me fell away and a new self awakened and stepped into this life.  It has been ugly, grief-laden, heart-breaking, enraging, and a thousand other things that I never knew one could feel.  It’s been that but it’s also been the most rewarding experience of hope, perspective, gratitude, joy, love, faith, truly the highest of highs and the lowest of lows. 

    What I realized tonight that it isn’t November 3^rd, it’s the preceding days that rattle me, that dredge up that uncomforting swirl of dread and remembrance.  It makes me remember. 

    The flashbacks of that day do still hit me, more often than I would probably admit, with an overwhelming rush of memory and emotion.  Sometimes it’s me weeping, running down a sterile, fluorescently lit hospital hallway into the arms of a beloved family friend.  It’s the image of Elena in a white diaper, under the brilliant lights of the ER, her tiny body laid upon a sprawling gray, cold examination table.  I remember what I wore:  mustard colored sweater, striped collared shirt, jeans, boots that made a clunk, clunk sound that echoed off the parking garage walls as I sprinted from my car to the ER at Riley.  I can still feel the freefall of my stomach, the thud of my heart against my chest, the nausea rising in my throat, the tears that rained freely and constantly down my cheeks.  I can envision Dr. Smith’s serious eyes and the calm intensity about her face as she asked permission to drill a hole in Elena’s skull at her bedside to relieve building pressure in her brain.  The one that haunts me the most, the drive to the hospital where my thoughts went scattered, my mouth could not form words, only hysterical screams that clawed their way from some unknown part of myself.  All of these, and more, still grip me from time to time, especially around this time of year, each time forcing tears that sting my eyes and usher in a reminder that all of these were actual things I lived.  Real life moments I experienced.  I witnessed. 

    But more than just November 3^rd itself, I have distinct and vivid memories of the last days with that little, precious baby.  I remember how she looked in her chicken costume on her first Halloween, cheeks squeezed together by the white feathered fabric hood.  I remember the last walk we took with her, our typical stroll under the falling leaves of the tree-lined streets of our neighborhood.  She was wearing a little pink hoodie on the last day I picked her up from daycare.  It had been a beautiful day, the babysitter taking her out for a walk.  Our last dinner the night before, we ate spaghetti with dear friends, Chad bouncing her on his knee at the dinner table.  Those memories are the last, of that little girl, and the end of a life I would never know, making them precious, almost sacred.  The fading sunlight on a closing chapter of my life, the calm before the biggest of life’s storms.  And that’s what I’ve been grieving the last few days.  That’s what I grieve every year from October 31^st to November 2^nd.  I grieve for that lost innocence, those unmet expectations and most of all, for my baby girl, whom I would never get to know. 

    As you’ve read time and again, God spared Elena’s life on November 3^rd, but to me, metaphorically, everything died that day and was returned in a different way.  We were all reshaped, reborn, reset on a path we couldn’t have imagined.  There was a time where I was angry about it, unwilling to accept, but I’ve come through that.  I will always long to see how things would have turned out and of course, I would give anything, anything for my dear Elena to be whole, but what I have found on this side of it far outweighs whatever I thought I lost.  Despite the tragedy our family had to endure, the gifts we have been given as a result are far beyond anything I ever could have asked or imagined.  God’s promise reigned true.  He delivered.  He was faithful.

    What I realized tonight is that it’s okay to still grieve a life I will never have.  It’s alright for me to still, nine years later, mourn that little girl whom I will never know, while still loving the Elena that was given back to me.  I can both grieve and feel a deep satisfaction of how my life has turned out.  I can both grieve her and remarkable, overwhelming joy when I look into her eyes.   I can both struggle and be strong at the same time.  I can wonder what a life could have been while being incredibly grateful for this abundant life I have been given.  Joy and sorrow.  Grief and gratitude.  Pain and purpose.  These can all go hand-in-hand. They have all been woven into the fabric of my life.  I can grieve the last memories of that life and still wake up November 3^rd and be overwhelmed by joy and thankfulness for this life I live.  It doesn’t have to be one or the other.   

    I’m finishing this as the sun dawns over this day, forever memorialized as the day our lives were forever changed.  I get to wake my girl with our morning song, kisses on her cheeks.  The grief of yesterday is a memory.  The rising sun brings with it a profound love for my family and the well of joy within springs forth, exploding my heart with gratitude for this life of hardship and abundance God has called me to.  Acknowledging the sorrow of the last few days does not replace the peace that holds me today.  Instead they work together to remind me of the love and privilege I have in Elena, this daughter of mine, who has stolen my heart in a million different ways, taught me more about resilience and unconditional love than I ever thought possible.  All of these emotions work together to remind me of the privilege of each breath, each dawn, each opportunity to bring love and goodness into this dark and flawed world.  And so, today, November 3, 2020, nine years later, I hang onto the pain of this day with one hand and hang onto the hope that always lies in tomorrow with the other.  It doesn’t have to be a choice.    

Nine.

I began writing a birthday post to my best girl earlier this week.  It was about how, after her injury, birthdays have come to mean something more than just balloons and cake and presents.  It was deep and heavy and I just don’t think the world needs more deep and heavy right now.  There’s so much of that every where we turn these days.  I don’t want to relive the suffering, the heartache, the injustice, the pain, the depth of what she has endured in her short nine years.  Here’s what I want to put into the world today, on my darling Elena Catherine’s 9^th birthday.

Love.  Joy.  Light.  Three words that sum up my gal.  She’s what the world needs right now.  Who Elena is and what Elena represents is everything that is good and worthy in this life.  She is an overcomer, not a victim.  She is determination, not resignation.  She is gratitude, not cynicism.  She is perspective, not close-mindedness.  She is peace, not bitterness.  She is a uniter, not a divider.  She is love.  She is joy.  She is light. 

I was recently talking with Chad about what a great school year Elena had and how grateful I am for the team of people, peers and staff that cultivate this experience for her each day at her school.  I expressed how lucky I feel to have her in a place where she is SO loved and celebrated.  These things are all quite true, but Chad then added, “But Emm, it wouldn’t matter where we put Elena.  Wherever she is, she draws people to her with that light inside her.  People love her and gravitate to her wherever she is.  She’s impossible not to love.”  And he was right.  She is love. 

While it indeed breaks my heart to run through the never-ending list of suffering, enduring and overcoming that my girl has had to do in her short nine years, I have also been greeted by her every single morning with a grin, a coo and, some mornings, an uncontrollable case of the giggles.  What this has taught me is that it never matters what you must endure each day, it’s how you endure that counts.  There is no greater inspiration to me than this.  She is joy.

Calvin and I were recently reading a book on Helen Keller.  It initiated a conversation between us when I became a little emotional reading about the frustration Helen felt as a young girl who was unable to communicate.  He asked why I was crying and I told him it made me sad to think that Elena may feel similarly misunderstood or frustrated since she wasn’t able to communicate, much like Helen.  I told him that Mommy wishes more than anything that Elena could talk with us.  Calvin is a thinker, an analyzer, and I could see the wheels turning.  He just looked at me with his big, brown eyes and said, “Nah, Mommy.  It’s ok that Elena doesn’t talk like we do.  I love Elena just the way she is.”  Imagine that.  Accepting someone for exactly who they are, seeing beyond what they can’t do, and loving them just where they are.  She is light. 

Sometimes I like to think that when her heart stopped beating briefly that ugly November day, God held her close in His arms for those silent moments, and with a kiss sent her back to us touched by Him, a light within her burning brighter, more perfect, as a piece of heaven on Earth.  I know that she was sent back to us, in her own way, perfected, special, and most importantly, with immense purpose.  She is a reminder to me each and every day of the fleeting gift of life, every single morning an opportunity to love more, to laugh more, and to truly rise above the unmeaningful distractions of this world.  She has changed me, as a Mom, but moreso as a human.  What she has taught me and what she continues to teach me refines me, stretches me and grows me.  For a little sweet pea who has never spoken a word, I'd say that's miraculous.  

Today, in honor of our Elena’s 9^th birthday, do something that she does every day.  Choose joy.  Spread joy.  Choose love.  Spread love.  Choose light.  Spread light.  Look around and choose to see what goodness surrounds all of us.  Think of Elena.  Think of what she chooses every day.  Be the light where you are.  Love people for who they are, where they are, what their abilities are.  And always approach your day with a smile, a coo or an uncontrollable giggle. 

To my darling Laney Lou on your 9^th birthday, indeed you are my little slice of heaven on Earth.  You inspire me, your Daddy, your brothers and the world around you with all that you are.  Your abilities are what make you, you and you couldn’t be more perfect.  I delight in your smile, your giggle fits and your big, colorful bows.  You are the heartbeat of our family and it is a privilege, a true honor to watch you grow into the beautiful, little girl that you are.  Happy birthday my love. 

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. 

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