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.



Thursday, September 21, 2017

I Think I'm Doing it Right

It's been radio silence here for almost a month.  Indeed, I am ok.  Several of you sweet, sweet people reached out to me after my previous post (here), with beautifully encouraging words that were not only uplifting to me, but gave me great perspective.  I truly love that about sharing.  There's definitely a correlation between me being vulnerable and sharing things here and how my eyes get opened to different ideas/thoughts.  I know not everyone is a sharer (especially a public sharer) but for me, being honest about something I'm going through leaves me open to receiving so much love, kindness and perspective.  So thank you all you sweet people.  Thank you to those of you who go on a feeling of needing to reach out.  Your words are always meaningful to me and almost always rattle my core a bit.

I am ok though.  You see, things (mainly emotions) build up in my head and my heart over time and if I don't let them out, it just makes things worse.  And for me, I articulate best via writing.  And even better, I have so many of you who care about our family and our girl.  Sometimes I think three, maybe four, people still keep up with us nearly six years later, but then I'm gently reminded that God is still using Elena, using me to share His story through our story.  Goodness, that's a blessing but also a responsibility!

Like all of life, there are highs and lows.  On our particular journey, there's grief, oh so much grief.  There's frustration, sadness, failure.  But there's also love, kindness, resiliency, strength, joy, peace, faithfulness.  I *try* to hit them all, but there are periods of time that are just plain hard.  In my Bible study this morning, our teacher mentioned that God promises "springs of flowing water" within us that refresh and strengthen us when we begin to feel depleted going through life's difficulties.  I had never heard that before, but was able to immediately connect to that feeling.  I can't tell you how often people say to me, "I don't know how you do it."  Well folks, that it.  When things are hard and fuzzy and I can't tell which way is up, somehow I get replenished to carry on.  It's my strength and it's how I have learned to be resilient.

Now that may sound funny to some people, and I can understand that.  It certainly doesn't mean that I'm always focused and bursting at the seams with energy and vigor for life.  Ya'll I'm a Mom like a lot of you and I am ALWAYS exhausted, often daydreaming about running off to Mexico to margarita all day (yes, I just used margarita as a verb....I think we can all relate).  I mutter not nice things sometimes when I'm cleaning the kitchen (or the toy room or the living room or the bathroom or everywhere) for the thousandth time in one day.  I have days where I doubt it all, get so mad at God, grieve, cry.  But someone or something usually happens to help fill me up, restore my heart and give me perspective.  I just know where to give the credit, hint....it ain't me.

I read a little blurb on Instagram today (see!  social media can be good!) by Glennon Doyle of Momastery (@glennondoyle).  It said this:

"....we believe that life is easy.  That life is supposed to be easy.  So if it's hard we're doing it wrong.  It's hilarious... -- we know that life is hardest, relationships are hardest, work is hardest.  All of it is hardest for people who are doing it right, who are showing up, making themselves vulnerable, falling down, trying again and getting back up...."

The gist of it being that when you pretend that life is easy, that you've got it all together, you're doing it wrong.  Pain and life are hand in hand.  When we can acknowledge that, we can be vulnerable and help each other.  When I shared that last post with you all, it wasn't necessarily easy.  It can be hard to share feelings, even for me!  But, what I was met with was love, acceptance, encouragement.  You texted me, emailed me.  You asked me how I was *doing*, like *really* doing, not just a generic greeting.  You prayed for me.  Even if you can't relate to having a special needs child (which can feel incredibly isolating, by the way), you cared.  God may be using me, but God is using you guys too.

There's no new progress on the communication front for Elena.  I'm still frustrated.  I'm still disappointed.  I don't have any clear next moves or answers.  It's all still on my mind daily.  But, I have hope that we will find a way to get my girl to speak to us.  And there's always beauty on the journey, as evidenced by all the perspective gained above.

And there's this...my little model.  The image of God's goodness right here, folks.
Elena's picture taken for the Jackson Center fundraising gala last week.

Tuesday, August 22, 2017

Frustration. Hope. Failure. Try Again.

Guys, I’m frustrated.  It seems like there are about a million injustices that I’ve been facing lately when it comes to Elena and her disabilities.  Advocating for her never gets easier and it certainly never lets up.  If I am not constantly on top of things, it doesn’t happen.  And sometimes, well most the time, it’s exhausting.  Often, I find myself throwing in the towel just for a short bit so I can gather myself mentally to keep up the fight. 

Whether it’s “petitioning” insurance to provide my daughter with, GASP, two different positions (a wheelchair AND a stander?!?) at home or how incredulous the lack-of/non-existent accommodations airlines are required to make for people with disabilities, it all sends my mind reeling and my inner-Mom finger wagging.  This world our family is required to navigate is filled with road blocks at times.  It’s 2017 and our country/culture has come so far in the fight for people with disabilities, but it still seems so archaic in so many ways.  The disability world is still new to me and perhaps the longer I’m in it, the more I’ll get used to it or better yet, maybe things will get better.

I know I can be hard on myself a lot, and I am reminded to give myself grace daily.  Chad and I are constantly making sure that we are doing our very best for our kids but especially for Elena, just because she needs it.  But, I’m frustrated.  It feels like I’m failing my girl in the one area that, right now, seems most important.  

Recently I left her weekly speech therapy appointment, where we have been working with her communication device, in tears.  For an hour, I watched the most beautiful, happy little girl struggle, utterly struggle, to do the simplest of tasks.  The task was to point her head at a button on a screen to communicate one word.  Think about it for a second.  It's something I can do in a millisecond with little, to no effort.  But it took an hour for her to select merely four to five words.  I watched her little body and mind work so hard, every ounce of my insides were willing her to do just the tiniest of movements.  I was overwhelmed by the feeling that I'm failing her, an admission that wrecks me.

All I want is for my daughter to tell me something SHE feels or wants or needs.  Not for my sake.  For hers.  She has spent six years with a present, clever little mind that holds so much goodness, but does not allow her body to do its part.  Six years without a word.  Without telling me her tummy hurts.  Without telling me she loves me.  Without telling me she wants a hug.  Six years of us guessing what she wants and needs, and without the ability to tell us just how clever she really is.
I've watched thousands of hours of Elena struggle through many therapies, whether it was Physical Therapy, Occupational, Speech...that's what therapy is, it's basically struggling for an hour at a time, pushing your body to do something that it does not find natural.  For whatever reason, this particular hour got me.  As her Mom, it's my duty to seek out every opportunity for her.  And that includes, finding a way to give her a voice.  I feel like I'm doing everything I can in every way for her, but still, I'm failing.  Six years later, I still am unable to help my little girl get what's inside, out.

And so, I’m frustrated.  I’m guilt-ridden.  I’m sad.  This is something that is on my mind every single day, a constant lump in my throat.  For the first time I can remember, I’m afraid I won’t be able to maintain the strength I need to endure all the failure it will take to find Elena’s voice.  Yes, there has been success on this path, but man, it is a roller coaster unlike anything.  I think it’s because, in my opinion, this is the most critical human need, to be able to communicate.  Sure, walking and eating are huge and would give Elena independence, but it terrifies me that she may never be able to tell me something on her own.  There’s so much technology, but Elena’s challenges are so great.  I’m not sure what my expectations should be.  There’s just so much at stake.  And I’m just not sure what to do.  

There’s no positive message on this one to wrap it up.  This is where I am.  Frustration.  Yes, fear.  Hope.  On this one though, I’d describe it as cautious hope.  I dream of her being able to tell me everything that is on her precious mind, but also have to remind myself that scenario may not happen on Earth, and challenge myself to be okay with it.  But, there isn’t giving up.  It’s frustration, hope, failure, try again.