Tuesday, February 26, 2019

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



Tuesday, January 8, 2019

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.

Thursday, November 15, 2018

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.  





Saturday, November 3, 2018

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. 








Monday, October 8, 2018

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.”

Thursday, August 23, 2018

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.



Monday, July 9, 2018

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