Show Your Hope!

It’s been a rough road lately.  So many things are out of our control in this life – and, when it relates to someone you love…it’s downright heartbreaking.

I won’t lie to you – these past few months have truly shaken us to the core.  We have tried desperately to make things easier for Sasha and, despite our best efforts – we have failed.  We’ve had to have some tough conversations and found ourselves in a place we have never been in before….a place where NO decision before us was a ‘good‘ or ‘desirable‘ decision.

After some soul searching and a lot of conversation with our medical team, we finally did land on a decision – but the entire process challenged me to get back to the core of my faith.

You see, sometimes life doesn’t give us what we think it should.

Sometimes it feels like life has cheated us or has betrayed us….and sometimes, it has.

BUT – until you can let go of what you think your life should be (or what life should be like for someone you love), you will never be able to fully embrace the life that awaits you.

Is it scary to take the leap of faith and just TRUST?

You better believe it is!!!!

BUT, you can’t have it all.  You can’t have the life you expect AND the life that is meant to be for you.

You can’t experience true joy without abandoning your expectations.

You can’t LIVE until you LET GO.

In 2010, life changed dramatically for me.  My body revolted and I was left reeling – trying frantically to pick up the pieces and move ahead with my life the way I thought it should go.

It took some time, but I eventually realized that the life I envisioned just wasn’t going to be the life I was going to have.  It was at that point that I decided that I was going to just embrace the road ahead and take it day by day, step by step, hour by hour, breath to breath.

It wasn’t easy…but slowly a new life blossomed before me.  It sure wasn’t the one I expected it to be, but it was one that was breathtaking, beautiful, painful, and scary.  But you know what?  It was all worth it.

You know what else?  I would have NEVER imagined I’d be the person I am today.  I would have NEVER imagined that I would be in the place I am today.  I would have NEVER imagined that I would have the blessings I’ve been given.

Kurt Stahl of Cuppa Day and The Stable Coffeehouse on “Show Your Hope”

There are SO many more blessings that I could go on and on about….so many people who have touched our lives…there wouldn’t be enough space in this post to even scratch the surface…

So, when life threw us another curve ball – I naturally fought it, feared it, and was broken by it.

It wasn’t until I was listening to the final version of one of the songs I recorded in Nashville that I realized I wasn’t following my own words….and I realized that it was time to embrace it with an open heart.

We fought SO hard against the things that were needed because we feared the change…but the truth is that the change is what was needed and the expectations are what held us back.

That’s not to say that things haven’t been hard (because they have been), that there haven’t been tears (because there have been many), that I don’t wish things were better (because I do), and that I haven’t felt broken or weary (because I have) – it just means that I know that, even though it’s not the way I ‘expect’ things to be – it’s the way things are.  I can either run into the arms of The Unknown with a fierce and determined heart OR I can let The Unknown swallow me whole.

I think you know which one I chose.  I hope you’ll do the same.

Love and Light,

Stefani

Oh, 2013…you have been an interesting one.  This year has caused our cup to runneth over – with love, heartache, compassion, peace, joy, uncertainty, fear…and HOPE.

I could probably take up A LOT of internet space here just talking about our year – and, I actually started doing so in a separate post that I decided to scrap.  You know why???  Because, instead of going into great detail about it all, I’d rather just sum it up simply.  I apologize for the late posting – but 2013 had a rough ending and I’m just finally catching up and getting back into the swing of things.  I’ve got a few blog posts to catch up on – but this one seems most fitting to post now.

We laughed…..

We cried…..

We struggled….

We persevered and fought hard…

We were brave….

We were scared….

We were joyful…

We were weary….

But no matter what, all that mattered was that were were together.

And, after reflecting about this entire year – one thing stands out.  Regardless of every hard moment, every scary moment, every uncertain moment – we had SO MANY beautiful, wonderful, fulfilling, promising moments that carried us though.

We have been blessed beyond measure to have a wonderful family that has stood by us and been there for us through it all.  I could not be more grateful to have a mother, father, aunt, and niece to share a home with and wage these battles together.

We have been truly humbled and inspired by our dear friends (both near and far) who have given us strength and comfort (or a good swift kick in the rear) when we needed it most.

We have had a wonderful school staff (and home school teacher/tutor) that (despite my frustrations over trivial things), have been outstanding in their support for our children and have genuinely loved them through some pretty difficult times.

We have the most amazing medical team that communicates clearly, honestly, and respectfully – keeping in mind our desire to keep things as non-invasive and minimal as possible.  They are dedicated, hard working, and have brought back pieces of Sasha (in particular) and Will that I never dreamed I’d see.  Without this team, I fear we’d still be muddling along trying to find our way as we watched our kids continue to regress or lack forward progress.

There have been times during this year that I have felt like I couldn’t catch my breath….like every step we took forward – we would take 3 steps back.  I’ll be honest – I have had some really huge fears come to the surface this year – and those fears were real and warranted, but I had to learn (and am still learning) to let go of the things I cannot control and embrace whatever comes our way as tightly and lovingly as I can.

And yes, there were tough times in 2013…here are a few of the toughest times this year:
Learning Sasha was continuing to regress developmentally
Watching Sasha lose skills
Hearing how rough things were going medically for both of the kids
Will being bullied at school
My other family members struggling medically
Watching Sasha’s little body struggle to regulate itself – and then, despite our best efforts – accepting that we had done everything we could non-invasively to mitigate it.

And ultimately being left with decisions to make – despite the fact that there were no ‘good‘ or ‘easy‘ options.

BUT….there were also SO MANY good times this year.

Here are some of the most incredible times of 2013:
Watching both children work hard and make progress during physical therapy (and Occupational Therapy for Sasha)

Watching Will and Sasha (and my niece) blossom into amazing little advocates:

Time with old friends

Amazing new friends who became family….

Special Memories

Big Moments

Citizen of the Year award

Nashville!

Getting to catch up with Liz Longley in Nashville

My mom and the amazing Liz Longley

Getting on the plane to Nashville with my mom!

Stephen Gause!

Singing in Nashville

Nashville!

Kurt Stahl of Cuppa Day and The Stable Coffeehouse on “Show Your Hope”

JT and Brant of Big Kettle Drum on “Show Your Hope”

Kurt Stahl of Cuppa Day and The Stable Coffeehouse on “Show Your Hope”

Jonas Woods on “Show Your Hope”

Jonas Woods on ‘Show Your Hope”

Michelle Fox of Team Hope on “Show Your Hope”

Randy Pierce and the Mighty Quinn from 2020 Vision Quest on “Show Your Hope”

Brant and JT from Big Kettle Drum on Show Your Hope

Fundraising and Blood Drives…

So yes…2013 had some really crappy moments, I won’t lie to you.  BUT – the beautiful, breathtaking, empowering, and wonderful moments take center stage to remind us that, even in the darkest times – suffering bleeds joy.

May 2014 be a better one for all of us,

Love and Light,

Stefani

Oh, and P.S. – We’ve got some pretty awesome things on tap for 2014 – Stay Tuned!