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.