Monday, March 19, 2018

Changing Seasons

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

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

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

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

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

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

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

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

Thursday, March 8, 2018

Coming Out of Hibernation

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

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

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

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

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

Happy girl.

Being silly with one of Calvin's Valentine surprises!

Standing tall with Miss Polly (her PT)



Friday, January 12, 2018

Being Brave

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

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

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

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

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

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

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

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


Wednesday, January 3, 2018

A Hopeful 2018

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

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

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

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

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


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

Friday, December 8, 2017

What Your Words Mean to Others

I have spent the last few weeks reading over the emails you sent at my request in my previous post.  It has been emotional remembering the day that our lives changed forever and appreciating those of you who shared how our story has affected you.  Thank you.  It made me remember that our hearts weren't the only ones that broke that day.  Many of you were right there along side us, holding us up by your love and prayers.  You've cried with us.  You've grieved with us.  You've celebrated with us.  You've stood along side us, watching Elena grow into the beautiful, joyful, silly six-year old that she is.  Thank you.

Especially touching were from a few people, who somehow stumbled upon Elena's story and shared  how it had blessed them.  One from Christy, who doesn't know us, just happened across my blog one day.  She told the most beautiful story of how she found hope in our story, that gave her strength when walking through her own valley.  Her journey was different but also familiar and her words really touched me. 
      "Then I remembered Elena, and your journey.  I looked to your blog to find hope, and inspiration.  I saw how your faith was carrying you through.....It helped me see that I may have lost something that was our 'normal' but gained something even greater in our new 'normal'."

Thank you, Christy.

Another came from Patty, also someone we've never met, but has found inspiration in Elena's story and has been praying for our girl for six years.  It always amazes me how far Elena's light shines and the people whose hearts have been touched by her.  I'm a firm believer that God works his way into our hearts, encouraging us through our troubles, through people.  And it's a honor to know that in spite of the heartbreak of her injury, and the difficult road it set our family on, God continues to use us to declare His goodness.  Thanks Patty, you touched my heart.

Opening yourself up to vulnerability is a scary thing.  There are many times where I second guess myself about how much I share, how much I feel, but in my heart I know someone may be out there who needs to hear that they aren't alone.  I'm always so inspired when I hear or read someone else who is brave enough to share their story, and simply say, "me too" or "I've been there".  This is my "me too".  And not just how we cope with the challenges of having a special needs child.  But also, just being a Mom.  Being a person, who has feelings and struggles and shortcomings.  I'm very aware that because of the blog and because of what our family has been through, people have watched to see how we react, how we cope and how we live our life.  I'm sure some can't relate or think we're nuts.  Some probably put us on a pedestal and give us way too much credit.  And some of you maybe get it.  That we are just like everyone else, maybe a different set of circumstances, but still in need of grace every single moment of every day.  We just do our best (totally imperfect with this too!) to hand our burdens over to the only one who willingly, joyfully carries them for us, Jesus. 

This time of year is increasingly reflective.  I think about years' past, and all the memories we have of holidays before.  But also reflect upon what the past year has been, full of peaks, full of valleys or full of both.  It's also a good time of year to slow down (yeah right?!?) from the hustle and bustle of the holiday season that we can all reflect upon the impact our lives have on others.  Good and bad.  Are our words and actions full of anger, bitterness, resentment?  Or are they chock full of love, grace and kindness.  Do we build people up with encouragement and comfort?  Or are we desperate to remain holed up in our hurt and our injustices, spewing it to those around us?  This time of year is all about peace, humility, giving and kindness.  Let's strive to reflect that, not only amidst the holidays, but in our hearts and in the treatment of those we love and those around us. 

Words can bless our hearts, as in the meaningful emails you sent me last month.  And words can be bristly, hurtful and build walls.  Showing kindness, sharing our stories with another, and encouraging others should all be on our Christmas lists this year.  You never know when your words or actions (intentional or not) can be the change in someone's life. 

**You can now email thoughts, responses or whatever (nice, of course!) at ourshininglightblog@gmail.com

Friday, November 3, 2017

Six Years Later

Not many people experience a moment when life as they know it ends, and the entire trajectory of their life does an about-face.  I have.  And on this day six years ago, everything about me, my life, my future was changed forever.  My nearly four month old daughter stopped breathing, her heart stopped beating and though she was revived, I would never again see the baby girl I had dropped off hours earlier.  November 3, 2011 was the day that everything changed forever.

Panic.  Hysteria.  Terrifying.  Those are just a few of the words that I can find to describe how that day was for me.  That day is so traumatic for me to relive.  Even now, it's difficult for me to speak about it.  I find it much easier to hide behind my keyboard in the quiet, emotions in full force and write about it.  But speaking about it, it hurts and I always cry.

Of course, there's more than that day.  The following 20 days we spent in the hospital, living in a state of complete shock, unable to comprehend what would lie ahead.  The first couple months at home, where we had to reacquaint ourselves with a baby we did not know, in a new life with new worries, new medical terms and constant fear.  And then the next nearly two years that it took me to come out of the darkness, to understand and accept our new lives, Elena's new life.  And most of all choose joy.

As Chad and I were remembering last night, talking over the little details and things we often forget, I just kept saying, "I can't believe we lived through that."  I can't.  When we talk about that time, it sounds so impossible.  It's terrifying to look back and see what a valley we walked through, how dark and deep it was.

A couple of weeks ago I stumbled across my old Bible I used through my teenage years, and a letter fell out of it when I picked it up.  I remembered stuffing it in there years ago.  It was from someone, whom I don't even remember, I met during a youth mission trip in 1998.  On the back of the envelope was a Bible verse Deuteronomy 31:8:

"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.  Do not be afraid; do not be discouraged."

In the letter she wrote, "God is going to keep using you in mighty ways, just keep trusting Him." and she ended it with Psalm 121:1-2 "I lift my eyes up to the hills - where does my help come from?  My help comes from the Lord, the Maker of heaven and earth!"

I don't remember who this person was or what some of the other content in the letter was referring to, but I do know that these two verses struck me in the heart in that moment and have stuck with me the past couple difficult weeks.  Whatever trials I was facing as a 14 year old when this letter was written obviously pale in comparison to the journey I began six years ago, but in that moment it was such an affirmation to something I already knew.  I know how I, we, our family endured.  We were never alone.  We never could have survived this on our own and come out on the other side in the condition that we have.  Our marriage.  Ourselves.  Our love and hope in our daughter.  Our gratitude and perspective.

When I found those two verses in that letter, what spoke out to me was the love.  The love of a God who will never leave me alone to weather the storm on my own, that will cradle my heart and protect me from what I cannot bear.  It is the only explanation I have for the current state of my soul and my ability to choose joy in the often difficult days we face.  Elena was saved that day.  We all endured an unimaginable tragedy, but only a God whose love for us is so unfathomable, can take our tragedy, sustain us through it and use it to bring hope and shine a light in this dark world.

Over the last six years, you have shared this journey with me.  You have supported us.  You have loved us.  You have stopped me in a Cracker Barrel to introduce yourself and tell me how much you have prayed for us!  This blog serves us both.  It allows me to share the truth of our journey with you, while keeping you connected with our sweet girl and the amazing things God is doing in our lives.  Though somewhat selfishly, this is my story.  I don't speak for Chad and I try not to speak for Elena.  It's my truth and what is in my heart (hello, vulnerability!).  About a year ago, someone asked me a question that has since stuck with me.  I was asked what that day, November 3rd, 2011 and Elena's injury was like for our family and friends, the people that were with us that day and in the following days, weeks, months.  Perhaps it was the self-preservation mode that happens after a trauma or maybe it was too painful to know, but it occurred to me that I had never asked anyone (other than Chad) what their memory of that day was or how Elena's injury affected them.

And so now, sheepishly, I ask.  I ask because this question has been in the back of my mind for some time.  And I feel like maybe this is part of my healing process, stepping outside my experience to try and understand someone else's.  Maybe someday I can share these with Elena and the boys as a reflection of the love, empathy and steadfast support you all have given our family.  Painful to read I imagine, yes, and probably painful for some of you to share, but also it's your story, woven into ours.

I have set up an email address ourshininglightblog@gmail.com if you feel moved to share your experience, your memories or how Elena's story has affected you.  Six years of peaks and valleys, inspiration and desperation, hope and despair, frustration and blessings.  I can only pray that Elena's light has shown as brightly through the darkness for you, as it has for me.












Monday, October 23, 2017

Remembering the Before

It's that time of year again.  When the little ache in my heart grows a little bigger, knots take hold of my stomach and I endure flashback after flashback.  Today I spontaneously broke into tears in my car, simply driving down the road.  The weeks leading up to the day, the day our lives changed forever, are almost always harder than the day itself.

I find myself struggling to remember that, with Elena, there was a before.  There was a time when we were na├»ve and unaware of the world that is now our life.  I was a new, young working mother dreaming about the future of our new family, and worrying about my “problems”.  It’s easy to look back and think about what I would have done differently, but time doesn’t allow for that.

Every year in the weeks leading up to that day, I replay all the memories I have of the “before”, holding onto them dearly.  Because with every year that passes, those people who were, that time that was, seems to slip further away.   When I look at the last picture we took, I’m filled with a deep sorrow.  I know, now, what’s to come.  And that fear, the grief, the sorrow, the heartbreak are all still very real and tangible.  Perhaps I will relive it for the rest of my life.

And so I wait.  I endure the now.  I wait for the day to arrive so I can remember, cry, grieve.  But I always remember that she lived.  And for that, I owe to God for saving her and for sustaining me the past six years.  Even in the pain, there is always goodness.