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

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 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, 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 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.  

Tuesday, August 8, 2017

Summer 2017

As "summer" comes to a close, I figured it would be a good time to recap the last couple months.  Seeing that I can barely eek out a blog post a month (sorry all you lovely, patient readers!), there's actually been quite a bit to fill in.  In fact, I can't believe Elena starts school TODAY....didn't school just recess?

Elena had an awesome time at the Jackson Center's summer camp.  They did such a great job with it this year.  She came home eager to share with us her day and completely exhausted, both good signs!  It ended mid-July, so the last three weeks we have been....counting down the days until school starts. School.  WOOOOOHOOOOO!  I mean, I'm excited for Elena to get back to her normal routine of full days at school (Calvin too!) so that we can all have a normal life again.  Ha!  But really, summer is great for about 4 weeks and then the last 3-4 really test me in every sense of the word.

Having two immobile children and one preschooler makes it hard for my one-woman show to get out of the house during our days at home.  I've been fortunate to have a sitter this summer who has helped me juggle my circus so that appointments could be had, therapies could continue and my sanity could be maintained, quite frankly.  I'm serious though, it's nearly impossible for me to take all three kids anywhere by myself.  I have to push a stroller and a wheelchair (Elena is now too big for the double stroller) at the same time, while Calvin toddles along beside us.  People, it just doesn't work.  So, we've been pretty cooped and the mom-guilt hits hard when we do the SAME THING EVERY DAY and I pray and pray that nap time rolls around.  So yes, I welcome Elena back into her busy school routine where she gets pushed and stimulated and has fun activities all day long.

Elena is doing Kindergarten part deux, as I like to say...aka she's repeating Kindy.  We kind of had this planned when she started last year, seeing that she had just turned five and would be one of the youngest in her class, not mention her developmental delays.  She had such a great year socially and therapeutically but we weren't as pleased with her academic progress, so we made the call to do a repeat, having great hope that she'll be in such a better prepared for first grade next year.  We have a ton of confidence in her team and have SUCH a better idea of what to expect.  We are a little less naive and a lot more prepared so here's to a good Kindy part deux!

So yeah, that's that.

Two weeks ago, my parents packed up 38 years of life at our home on Shadow Hill Court and made the voyage all the way to the northside of Indy (ha!).  It was a really hard goodbye, to their neighbors (most of whom have been there as long as my parents), to the house and the trove of memories that envelope that home.  Walking through the empty house was surreal.  Memories of family dinners, knee football in the hallway, whiffle ball in the yard, helping Mom wallpaper my bedroom as a girl, Christmas mornings (and Christmas present sneak peeking in Dad's closet) all came to life in my head.  A majority of my 33 years of life occurred between those walls, and saying goodbye was tough.  Tears were shed, hugs were given and we packed them up and moved them out.  It's so nice to have my parents close, though.  Just knowing they're a few minutes away, spontaneous drop-ins and dinners now possible, is exciting.  A new chapter in the Frey family begins.

Rewind to about a month ago...

At the beginning of July, Chad and I were fortunate to jet off on a vacation to celebrate the wedding of some good ITALY!  It was a dream trip.  We spent half of it with some of our best friends eating (and drinking...hellooooo vinooo!) our way through Northern Italy.  The second half, Chad and I spent a few days to ourselves on the Italian Riveria, hiking, sailing, eating and yes, more wine.  It was a wonderful trip and time for us to unplug from life to just enjoy the simple things...friends, food, wine in a magical setting.  And yes, the kids did just fine with our families...or so they told us, anyway!  Take me back!

In the middle of camps, traveling, moves and more, we managed to celebrate Elena's 6th birthday and my 33rd birthday (though I don't really remember "celebrating" my birthday).  We are celebrating our 8th anniversary today and have Turner's 1st birthday right around the corner (what?!?!?!), and before we know it, it will be fall.  The kids are getting bigger every time I look at them.  Some days are hard, some are full of laughs and joy.  It's been such a beautiful summer.  For me at this stage of life, I like appreciating the moment, but always looking forward to the future and what new memories can be made.  Our life is nuts but mostly, I wouldn't have it any other way.

Friday, July 14, 2017

She's Six

Last Sunday, my baby girl turned six.  My head is still trying to wrap itself around the fact that I have a six year old.  It's funny to think about myself, who I was, such a naive little thing then.  Boy, has life happened over these past six years.

We were sure that our Elena Catherine was going to be born Henry William that day (we didn't find out the sex).  Instead, we were surprised to hear "it's a girl!", as our sweet little girl entered this world weighing 8lbs 2oz.  She was such a good baby.  She was a sleeper, an eater and as yummy as a newborn can be.  Life was good.

We learned more in the first year of her life than any parent should.  It was supposed to be a year of watching her grow, achieve, with all kinds of firsts and dates to record in the baby book.  Instead, it was a year of pain, tears, darkness, the realization of the fragility of life.  Her first year was the hardest of my life.  In all honestly, it's hard for me to actually remember the first year of her life.  It's just dark.

But, I remember her first birthday.  I'm certain we invited close to 80 people into our house that hot July day.  I wanted everyone who loved and supported us through it to be there, to celebrate a day that should not have been.  I cried my way through that day.  Happy tears.  We had made it.

And every birthday since has continued to be a celebration.  We celebrate something that we know was nearly lost.  Her birthday has incredible meaning and has now become a reminder of what we were given.  It's a time to reflect upon the beautiful memories we have made in another year of life.  It's a day to look at our beautiful girl, be proud of the amazing things she has achieved and give thanks to God for giving us the gift of her life, her smile and all we have learned along the way.

For our most precious girl, who cries every time someone sings the happy birthday song, you have enriched our lives more than we could ever know.  You are brave.  You are resilient.  You are loved.  You are a blessing.  You are joy.  You are perfect.

Monday, June 26, 2017

A Lesson in Listening

My inspiration tank has been low lately.  I’m assuming that it probably has something to do with me not having much time to think about things other than who needs to be fed, put to bed or out the door.  Save for an hour at church on Sunday and perhaps an adult conversation sprinkled in there, my brain often feels like it’s been depleted of all topics that are stimulating and interesting.  Call me crazy, but I actually enjoy introspection and discussing interesting topics other than what kid drove me nuts today and why.  In this season of life, there isn’t much time for that.

There has been a common thread weaving through my days, however.  I’ve felt compelled to practice listening.  This is ridiculous, right?  Practice listening?  But, if you think about it, listening is a skill.  Especially in this day and age.  I only know a handful of good listeners.  I personally come from a long line of VERY opinionated people.  And opinionated people rarely keep their opinions to themselves.  I’m emotional.  I’m a sharer (hello, blog).  I’m a straight shooter and a bad pretender.  Hence, the need for me to practice listening.

Everything around me just feels so noisy lately.  It often feels like everyone is shouting, both literally (my house is NEVER quiet) and figuratively.  I feel the need to be more mindful of what’s going on around me, not necessarily in my own whirlwind of a life.  A part of my listening practice is stepping outside of my own noise, quieting myself and hearing what’s going on around me.

One of my sweet friends moved away last fall.  She’s been such an inspiration (not to mention amazing friend) to me.  Life has been really tough for her and her family this past year.  Yet through it all, she would text every couple weeks and ask about ME.  How I was doing.  How she could be praying for ME!  At first, it made me feel guilty that here was this friend of mine going through a rough patch in life wanting to pray for me and stuff that I was dealing with.  But, the more I thought about it, I realized that I shouldn’t feel guilty, I should feel inspired.  It felt like God was using her to poke at me a bit.  That maybe I needed to step outside of my chaos at times.  Maybe I need to step back and listen to what’s around me.  Instead of contributing to the noise, perhaps me being a little less selfish and focused on my life, would give me a little more perspective and a lot more compassion.

As an emotional person, it can be hard for me at times for me to step outside of how I feel about something.  But, the more I get outside how I feel about things, the more I am able to listen intently to others and recognize that shocker, everyone is different!  I mean we all have problems, right?  We all have issues in our relationships, whether it’s a friendship, a marriage, a family member, a kid.  Becoming a better listener always helps facilitate when there are issues.  Stepping outside how I feel, stepping outside what I would do in a given situation, stepping outside of my hurt and frustration, to listen and try to see a different point of view allows me to walk away with a different perspective.  And my friends, perspective is everything.  And better yet, a more sympathetic, multi-faceted perspective is even better.

This theme has been echoing in my head these past few months.  As I step back from my own little bubble of life, observe, listen and let all this marinate, I’m finding myself appreciating what I’m discovering.  I think our world could use a little more listening and lot less noise.

Wednesday, May 31, 2017

Hooray for Summer?

Well, May was insane.  On Monday, Chad and I looked at each other and finally felt like we could take a breather from planning and our busy schedules.  We just had so much going on this month, it felt never ending.  And now here we are, staring down summer.

First, a BIG thank you to all of you who donated to Walking for Dreams and the Jackson Center.  We were able to raise a lot of money to support such a special organization.  To those of you whom I didn't thank personally, THANK YOU!  You all are so near and dear to us.

So we begin summer this week.  So far I survived one day.  Ha!  This week I'm home with all three before camps and summer commitments start.  I think I'll make it, but yesterday was 128 hours long, so we'll see how it goes today.  In an effort for positivity, I will say it's nice to not be running out the door every morning.  There's something to be said for leisure mornings.

Elena finished up Kindergarten last week.  It turned out to be a really tough year for us.  Elena did wonderfully, and completely loves school but we had some issues making sure our expectations were being met.  We all learned a lot about the process.  We are always advocating for Elena in various ways every day, but this year it was pushed to the max.  It was exhausting.  However, we do have a lot of confidence in Elena's team at school and feel really good about what we have in place for next year.

The communication device.  Thank you all for your fervent prayers on this the last couple months.  As anything, it's been a roller coaster of emotion.  Hope.  Frustration.  Disappointment.  Then hope again.  Such is life, right?  Long story short, Elena was showing some promise in using the device.  Then, we had technological issues, which happens.  We determined that Elena would likely need a bigger screen than the model we were using.  A bigger screen would allow her to have more "options" at a time without it being to difficult visually for her.  However, to trial a model with a bigger screen, there was a waitlist until October.  So, we are currently on pause.

It's slightly discouraging, only because any progress with Elena can require A LOT of time and A LOT of effort by her entire team.  And to make progress, then for it all to stop, is discouraging.  Not only that, but my greatest desire is to be able to give Elena the ability to express everything that her little mind wants to.  I dream of her someday being able to tell me something without me asking her or giving her a choice.  Not only for my sake, but for her sake.  I want her to feel the power of expression.  The time and difficulty that we have faced on this road, is incredibly trying.  For now, we are on hold.  It comes at an ok time.  It's summer and Elena's schedule is a little less consistent.  Hopefully, we can pick up where we left off later this year.

Calvin finished up his 2's year of Preschool.  He's our talker.  Constantly.  Around the clock.  He's either narrating his day or singing all the time.  Our babysitters always report to us that he didn't eat his dinner because he talked the whole time.  Even Elena gets annoyed.  At dinner he won't stop talking and she'll start yelling just to drown him out.  It's pretty hilarious.  And noisy.  Don't come to our house for a nice, quiet dinner.

Turner is nine months and is always on the go.  He hates to be contained for longer than 10 minutes.  He is content to just crawl all over the house.  We set him down and he just takes off.  He's a smiley little thing, though he certainly lets you know when he's not content!

I can't believe how quickly time goes.  Here we are heading into another season, summer!  I like summer because there seems to be a bit more freedom in our lives, but at the same time a slower schedule isn't always a good thing for us!  Fortunately, Elena starts summer camp at the Jackson Center next week and Cal will be heading to his preschool one day a week.  We have some fun things on the calendar to look forward to.  Hooray for no (foreseeable!) surgeries this summer!

One thing is for sure, summer is sure to fly by!

First Day:

 Last Day:

Calvin 1st & Last Day of 2's Preschool

 T-Bug at 9 months

Monday, May 8, 2017

The Home Stretch

We are in the home stretch for several big things!

First, being Walking for Dreams!  This is the annual fundraiser for the Jackson Center, where Elena does therapy.  During the school year, she goes for 3 hours of intensive therapy a week.  This summer she will be participating in their summer camp.  She'll be receiving therapy and academic instruction, not to mention having SO MUCH FUN!

You can read more about Walking for Dreams HERE.

If you would like to donate, we have less than TWO WEEKS LEFT!  Here's how to donate:

  • Donate online at  
    • Fill out the form.  Select "Individual Walker," then under "Walker" choose "Hinton, Elena."

  • You may mail a check to the Jackson Center  – Walking for Dreams.
    • Please be sure to include Elena's name in the memo line if you mail a check.  (802 Samuel Moore Pkwy., Mooresville, IN 46158)

Secondly, the school year is winding down.  I can't decide if I'm excited about this or not!  Ha!  But, as I explained in my last post, we've been praying for Elena and her trial communication device.  Keep up the prayers as we only have a few weeks left in this trial.  Then, we will determine our next steps.

Thanks to all of you who have donated and prayed for us over the last several weeks.  We are so thankful for each and every one of you!!

Lastly, Elena is now front-tooth-less!  She just lost her second front tooth last week.  Our little girl is looking too much like a big girl these days.

Sunday, April 23, 2017

The Possibilities Are Endless....

A couple months ago I blogged about our frustrations surrounding Elena's communication system and some of the struggles we had been dealing with.  We've been praying and praying about it for months.  Let me just share with you how faithful God has been.

Elena has had a communication system in place, as she is non-verbal.  Non-verbal doesn't mean she doesn't make sounds, it just means she is unable to form her sounds into words.  So, nearly two years ago we began meeting with a therapist who helped us identify a system to help Elena communicate both at school and at home.  It's incredibly complex, both for us and for Elena.  To simplify, she's had to learn vocabulary words and memorize a specific order of these words.  A pretty tough task for anyone, let alone a four/five year old.  

She has proved herself and her ability to handle this, which is incredibly promising, it has just never felt like the most practical or opportunistic system for her.  She was still only being given choices, not the ability for her to say whatever she was thinking, not to mention it was a slow process and difficult to use in a classroom and home setting.  It worked best when Elena was isolated and could really focus on the task.  Not exactly the picture of our home life or even the Kindergarten class.  

So, we began to pray.  We asked all of you to pray for a breakthrough of some kind.  

About a month ago, Chad was meeting with a client and they began discussing Elena and this issue.  It just happened that this client's sister was an Adaptive Communication Device Sales Rep.  After getting her on the phone, she and Chad connected that she was already familiar with Elena, as she had evaluated her at school the previous year to try out different pieces of equipment.  What are the chances?!  She mentioned she had recently had success with a device on a few kids with similar issues to Elena.  

A couple weeks ago, we all met at school to test it out.  And so here we are, the next couple months we are trialing out a new communication system.  One that gives Elena the ability to choose her words and has the potential to give HER the power of communicating.  I have SO MUCH HOPE riding on this.  

This has been another example of God's faithfulness in Elena's journey.  We know how capable Elena is.  We believe we have barely begun to tap into her little mind and all that is possible with her.  I can't express to you what it would mean if she were able to "talk" with us.  Just the very thought of it makes my heart sing.  

So, I ask that you continue to pray for our girl in this specific area.  If she shows promise and ability in the next few weeks with this new device, who knows what is possible.  Pray that she would be able to realize the opportunity she has with this device.  Pray that her teachers and therapists would help her navigate the new system with ease.  Pray that we would be able to work with her at home (in this craziness that is our reality!).  Pray that this would be THE catalyst that allows us to see into Elena's little mind and allow her to show us all she is capable of.  Oh, to know what she thinks!!

This is such a huge opportunity for all of us!  We so love all of you for your support and prayers!


Tuesday, April 11, 2017

Walking For Dreams 2017

It's once again Walking for Dreams fundraising time for the Jackson Center.  We have be excited to raise money for this special place and for Elena's continued therapy over the past several years in 2016, 2015,  and 2014 .

Elena began therapy at the Jackson Center in August 2013.  We were still learning about her recovery and what would lie ahead.  This place came into our lives at just the right time.  It has supported us and pushed Elena to achieve more than we thought might be possible.  If you have followed my blog for awhile, you'll know how much the Jackson Center has meant to us.  And so many of you have been so generous and supportive.  When I think about all the the Jackson Center has done for our family over the years, the one thing that truly stands out to me is that:

They truly believe in the ABILITIES of every single child that walks through their doors.  Every child is pushed to achieve.  Every child is loved for exactly who they are.

I can't tell you how much this means.  We found the Jackson Center at a time where we had no idea what Elena what going to be able to achieve, or what she was capable of.  They welcomed us in, and we watched as our little girl began to thrive and has continued to excel over the past nearly four years.

They say it takes a village.  And in our case in takes a booming metropolis!  We wouldn't be where we are, Elena wouldn't be where she is, without all of you supporting us, loving us, praying for us.  And we couldn't have done it without our dear friends at the Jackson Center.

100% of your donation, no matter big or small, goes to help fund the incredible therapy Elena receives on a weekly basis.  There are two ways to donate:

  • Donate online at  
    • Fill out the form.  Select "Individual Walker," then under "Walker" choose "Hinton, Elena."

  • You may mail a check to the Jackson Center  – Walking for Dreams.
    • Please be sure to include Elena's name in the memo line if you mail a check.  (802 Samuel Moore Pkwy., Mooresville, IN 46158)

Thank you, always, for your love and support of our family, and our sweet Elena.  

To read more about the Jackson Center and see pictures of Elena and her buddies, go to

Wednesday, March 29, 2017

Grief Bubbles

Grief bubbles.  It's what I call when out of nowhere, something reminds me of what we've been through with Elena or a life expectation that died that day in November.  You're trucking along, then bam! the tears well up, the lump in your throat forms and that familiar pain in your heart shoots through you.  Those familiar feelings bubble up to the surface.  Sometimes they last a few minutes, and sometimes they leave me aching the rest of the day.  Grief bubbles.  Five and half years later, I still have grief bubbles a couple times a week at the very least.  When they happen, I sometimes wonder if they will ever go away or if I will forever be reminded of the trauma of that day and the unexpected life path it set us on.

I've had a few more grief bubbles than normal lately.  I've been spring cleaning and I stumbled upon an entire "grief box" the other day.  It was box, that years ago, I dumped everything into.  I didn't know what to do with all the cards, pictures, hospital bracelets, pictures that our friends' kids drew her, things the Riley Cheer Guild gave us during our stay.   All of it in one box, all of it like a thousand knives into my heart at once.  Making it even more painful, was that at the bottom of the box were a different set of cards and mementos celebrating the birth and baptism of our perfectly healthy, beautiful baby girl.  Oh, if I could only go back in time.  I, too, found the book I had made of all our old CaringBridge posts and comments from all of you.  It was heartbreaking to relive those days, and even more heartbreaking to read the shock, fear and even naivete, how much our brains just couldn't process at the time.  Hi grief, terrible to see you again.

Other times, it's seeing a little girl in a tutu off to dance class or a mother and daughter together, giggling and holding hands.  Sometimes it is just talking to my own Mom, knowing the relationship she had with her Mom and that I have with her, our closeness, our friendship, realizing that it'll be different for Elena and me.  Planning family vacations, going out to dinner, school, figuring out which wheelchair to take where, therapy schedules, every day life, it's all a reminder of our circumstances and the challenges that we will always have.  

I mean I could rattle off a million things that leave me with that familiar sting.  If you've ever dealt with grief you know, it never goes away, you just grow accustomed to living with it.  And while I have come out of the dark consuming days of it, I'm coming to terms with knowing I'll have my grief bubbles forever.  They'll likely grow fewer and less often over time, but never cease.  I'm alright with that.  Even though they're terrible reminders of pain and hardship, I continue to be refined, gain perspective, understand gratitude and all the other hard earned tidbits of armor I've put on over the years.  Sometimes, I can even be thankful for the grief bubbles, they remind me of the fire I've been through, how resilient I am and the beauty that comes after it all.

It makes me think of a saying that we've heard a lot of over the years..."God never gives you more than you can handle."  I've put a lot of thought into that saying, as it always felt conflicting to me.  How could a loving God "give" me something so awful and heartbreaking, not only for me but for Elena?  Well, I've come to think that God doesn't "give" us the challenges.  Awful life stuff is a result of our decisions and imperfections.  What He does do, is promise to be there with you for every moment of it, steadfast, faithful, giving you the tools to navigate it.  I am resilient because of my faith.  I am grateful because He allowed me to see the blessings through it all.  I have perspective because He allowed my heart to forgive and let go of the bitterness.  All of the armor I have earned is a result of what I went through.  And though the grief will always reside in a piece of my heart, bubbling up at times, bringing me to my knees, I can endure.  

Tuesday, February 28, 2017

God Sent Me an Email

I rolled over this morning, grabbed my phone, checked my email in my normal first-thing-in-the-morning routine.  Because I'm so very important, I read the one new email I had received over night.  It was from my neighbor and friend, who happens to be an incredibly talented photographer.  

Last week we rounded up my crew to see what we could capture, mainly for Turner's six month pictures.  I dressed up the other kids just in case things were going smoothly enough to grab a couple shots of them.  

Turner's pictures were so cute, as six month old baby shots typically are.  

Calvin's were, well, what you capture when you tell a nearly three-year old to smile.  

But Elena's, my sweet Elena's.

What you don't see behind this picture is that the last six months have been an incredible challenge for me.  I have battled frustration, anxiety, fear and hopelessness with this precious one.  You see, she's my darling baby but can be my greatest challenge.  Every day can be a struggle.  I have not let myself appreciate this smile, unable to feel the joy that it brings to my heart.  I've been consumed, overwhelmed even, by the challenges of having a child who is visually, communicably and mobility impaired.  I have let the daily struggle overshadow the gift that she is.  

And then I wake up, to this.  Thank you, Jesus.  This is what He wanted to remind me.  This smile.  It is everything.  


My friends, I'll struggle every day until the day I die over what happened to my girl.  I'll struggle every day with the unique challenges our family faces as a result.  Every morning, it's a battle to suppress the fear and frustration.  But God has been so faithful, reminding me that she lived and her life is more precious to Him than I could ever imagine.  And that His presence, His love of her and me is constant, I'm not in this alone.  That amid the pain and struggle we face, there is always joy to be found, hope to grasp and Elena smiles to shine into my heart and into the world.    His blessings come when I least expect it, but when He knows I need them the most.  Our path is far from easy, but gosh, what shines through her, what she teaches me, the love I have for her is so worth it.  

My heart is so full this morning.  My beautiful girl.

Thank you, Chelsey, for capturing these.  I'm so grateful.  This smile is her gift, snaggletooth and all!  

(For the record, she lost that front tooth the very next morning!)

Wednesday, February 15, 2017

The Missing Piece

Hi Friends!  I'm alive.  Don't you worry about me!  

Actually, I have just returned from the land of the sun and grandparents.  I took off with Calvin and Turner last week (Elena stayed home with Dad because of school and work).  And it was awesome.  We went to go visit my parents and just had the best time.  Sunshine and grandparents seem to make the world go round.  Plus, my Mom is the greatest caregiver of all time so I enjoyed five days without cooking, laundry, cleaning and eating scraps (real meals, you guys!).  Pretty much heaven.  

It always helps, too, to escape the monotony of routine.  And we live on schedules and routine around here.  So it was great to shake that up a bit.  I was really able to focus on spending time with the little guys.  When I have all three, it can be so stressful and chaotic that I don't have time to stop and roll around on the floor with Turner or play golf with Calvin.  I did a lot of that last week and it felt really good, really happy.  

Things have been tough with Elena lately.  She hasn't really been her usual happy self and we've been frustrated and stressed trying to figure out what is going on.  Even though she's improved so much on the communication piece, it's still incredibly challenging to communicate with her, or rather have her communicate with us.  Having a child with special needs is like a giant puzzle.  We are constantly trying different things to see if they work, and trust me, there's always a piece that needs addressing.  Rarely do we have the chance to stop and feel like things are "together".  There is a constant battle between frustration, guilt and determination, one always replacing the other at different times.  Sometimes this happens by the hour, by the minute or by the week.  It's consuming.  So, when things aren't working just right, it's a scramble to triage what we need to focus on.  Then you realize you have two other kids who need you too.  It's been exhausting, which made my escape to Arizona all the better.  

I'm not hitting the panic button, nor should you.  I wouldn't say I'm more frazzled or drowning in children more than usual, but I do feel like we are approaching a crossroads with Elena.  We are constantly evaluating what we think is best for her, what her needs are, and how we can best address everything.  There is a stirring inside of me that feels like we are on the verge of something with her.  

We know that God has proven time and time again that He is able to do more than we could ever imagine, and I know that half the battle is just trusting Him and praying my way through it.  I'd like to ask all you prayer warriors out there to join me in praying big for our girl in the next few weeks.  We are desperate to have a breakthrough in communication with her.  We've been working on it for nearly two years, and to be honest, at times it's felt futile.  This is such a big piece of the puzzle.  Let's focus in on this and ask big.  

I'm so thankful for all of you!  

Thursday, January 19, 2017

Confessions, Kids & Having it All Together (NOT!)

This blog began as an extension of Elena's CaringBridge site when she was hospitalized at Riley during her injury.  About a year later, people were still praying for us and asking about her.  As a result, I decided to start this blog to keep people informed about our girl, but also, as a way for me to document our journey.  I know I often say it, but it still humbles me every time I post and more than three people read it.  It means so much that people still care.  And it means even more that people can see their own struggles, life trials, reflected in my writing.  But, I'm going to make a little confession to kick off 2017 (19 days late, no less).  I've come to feel a bit of pressure when it comes to this blog. I don't always have something meaningful to share, and these days quite frankly, even if I do, finding the time to collect my thoughts and share it is, well, difficult.  Authenticity is a core value of mine, and I don't ever want to come off as portraying my life, Elena's life as anything other than what it is, in all it's brutality, beauty, ups and downs.  This blog means a great deal to me and I don't ever want it to feel like a burden.  So, I ask that you hang in there with our family during this crazy time.  I ask that you hang in there with me and MY craziness.  And most importantly, I ask that you hang in there with our girl.  When I think about where we started, how far we've come, and where she is today, I honestly don't know whether to cry tears of joy or tears of heartache, both probably.  There's still so much to her journey that I want to share with you all.  So just bear with me while I'm finding my way out of the trenches of motherhood.

While I'm confessing, this being a Mom thing is really H-A-R-D.  I read Baby Wise before becoming a Mom, thinking that getting a baby to sleep through the night was hard.  There was no chapter titled, "After Sleeping Through the Night and Everything After-IS INSANELY HARD".  That chapter I would have definitely read and taken notes.

Don't get me wrong, I'm ridiculously blessed and love this precious family of mine.  However, my current days aren't spent, watching with sentimental tears in my eyes, as my potty training two year old poops his pants for the third time, all the while he asks "why?" to every word that comes from my mouth.  I'm not in awe (well, I kind of am) at the amount of spit up I find myself covered in at the end of the day.  When Elena is melting down of an evening after an exhausting day, I want to join in with my own tears, sit in a quiet room and watch my favorite show like she does.  No rest for the weary in this house.  It's followed up by one or all three kids waking up at some point at night, waking in the morning to my FitBit telling me what I already know, I'm tired.

The moral of this story folks is, don't have kids...haha just kidding (kind of).  But really, I'm in a tough stretch of life, much like many of you.  It may look the same or your life circumstances may look totally different, but you still are finding it H-A-R-D.  There's so much comfort for me in that though.  It's what makes us all human, our imperfections, our shortcomings, our lives.  I know I'm not the only Mom out there tired of cleaning up poop, dealing with meltdowns, answering never-ending questions and tired beyond belief.  I'm not any more of a Super Mom than any of you.

In the last week or two while attempting to sort out the constant internal churning of emotion, some real, some purely hormonal, it occurred to me that THIS is a time for me to be honest in my struggles.  I mean I'm typically honest in my struggles (read the last five years) but I think there needs to be more keeping it real with people.  I sat down with a friend the other day who proceeded to blurt out a major bomb that went off in her life.  She texted me later, perhaps feeling a little sheepish for sharing so much, and apologized explaining she was going to wait to share it all with me until down the road when things were a bit tidier.  Honestly, it broke my heart to think that anyone has to feel they need to tidy up their current problems before presenting them to a friend or anyone for that matter.  You guys, I don't care who you are, we all are going through shit (excuse my language, emphasizing a point here).  Deep, hard, tough, gritty, ugly life shit.  We can't keep pretending that we have it all together.  I have bared my soul to a few dear friends and family at times, and I'm sure it was pathetic and ugly.  I probably felt foolish at times, but you know what....they still love me.  And they cried with me.  And the prayed with me.  And they gave me the most beautiful nuggets of hope and love.  Soul-baring honesty can be so hard, but if I have learned anything in the last few years, its that without it, trust and each other, none of us would last a second in this world.

So, yes.  I've made it clear.  I'm on the Mom-struggle-bus over here.  We are in survival mode and I'm doing my best to dig this old girl named Emmalee I used to know out of the trenches and hose her down (she's currently covered in spit up, snot and maybe even kid-poop).  But at least you guys can know I'm keeping it real.  It's real messy over here.  I love every one of you who I've cried to and have responded with a "me, too".  We are ALL in this together.  The more compassion we can have for one another, the more kindness we can extend, the more grace we can give others who are deep in the mire, the more love we can shower those who are hurting, the better we will all be.  I love you friends, thanks for sticking by me and our girl.

Seriously, I'm going to shower!