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