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 www.walkingfordreams.org  
    • 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!

xoxo
Emmalee

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 www.walkingfordreams.org  
    • 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 www.thejacksoncenter.org


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!