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 friends....in 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 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!