Hope is a Journey….

2014 in review

So 2014 was a very quiet year blogging wise….I hope to post more in 2015.  There’s must to share!

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 11,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

I’ll Give You 56 Reasons

In honor of International Plasma Awareness Week!

Show Your Hope!

Many of you have probably never given blood donation much thought….
And if you haven’t….let me help put the importance of it into perspective for you:

If that isn’t enough….let me give you 56 reasons to get out there and give blood:

  1. 4.5 million Americans would die each year without life saving blood transfusions.
  2. Approximately 32,000 pints of blood are used each day in the United States.
  3. Every three seconds someone needs blood.
  4. One out of every 10 people entering a hospital needs blood.
  5. Just one pint of donated blood can help save as many as three people’s lives.
  6. The average adult has 10 pints of blood in his or her body.
  7. One unit of blood is roughly the equivalent of one pint.
  8. Blood makes up about 7% of your body’s weight.
  9. A newborn baby has about one cup of blood in his or her body.
  10. The average…

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This gallery contains 12 photos.

Originally posted on Show Your Hope!:
Dear Disney, I would like to take a moment and thank you for the joy you were able to give my children the last time we visited. I can’t begin to tell you how wonderful it was to see joy scribbled all over their faces…. Last year, after a…

To My Sunshine

My Dearest Sasha,

When you were a heartbeat within my own, oh the dreams I had for you….the plans I had for you…


Never in a million years did my plans involve the quiet hum of hospital pumps,


The urgent screams of the monitors intermittently interrupting our slumber as we count the hours til daylight,


Counting breaths instead of moments….


Some nights are harder than others…and tonight, I can’t help but weep for your tiny little heart….you see….I always thought that those precious lips would sing with joyful laughter, not cry out in fear or pain….


Those eyes….I hoped they would only see the splendor of this earth, not pour out the hurt that overflows from within….


Those ears….I prayed that they would only hear giggles and songs of happiness that swell from your heart – I never thought they’d be hearing the monotonous alarms going off next to your bed….


I always hoped those tiny little toes would feel the warm sand or the cool water rushing around them…I never imagined that they instead would know the feeling of the adhesive of a pulse oximeter squeezing tightly…

I always wanted those tiny sweet hands to hold your dreams…I never for one second thought that they would ever clutch starchy white sheets in pain…

I always thought your arms would know only warm embraces….I never – for one second – thought that they would bear the scars of countless IV’s.


My precious sweet sunshine…you should drift off to sleep in peace…I always thought that’s how things were going to be…you deserve that.

20140814_131112I can’t promise you that every tomorrow will be beautiful, peaceful, gentle, or merciful to you – as a matter of fact, my heart breaks a little more each and every moment that passes by – because a lot of your ‘todays’ have been pretty rough lately…but I can promise you that I will never stop trying to make it so your lips sing with joyful praise, your eyes see the splendor of this earth, your ears hear the giggles and songs of happiness that swell from within your heart, that your toes feel the warmth of the sand and the coolness of the ocean kissing them every chance we get, that your hands reach out to hold mine in peaceful moments as we carry your dreams together, that your arms would know more warm embraces, that your heart would know sweet peace…I would go to the ends of this earth for you – to give you that peace.

Lord only knows why He chose you to live this life, to walk this path, to know this suffering – and I struggle with that…but I TRUST in Him and I TRUST that He is with you, that He will never leave or forsake you, that He will mend you in the broken places and make you stronger.

Someday, my Sweet Sunshine, we will all understand why things have to be the way they are – but until then, I will rest in the knowledge that our God is Bigger, Stronger, and Mightier than anything that can happen to us.


I love you to the moon and back….


The Unknown

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.

no 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"

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…

soraya nulliah so many blessings

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.

Sasha Penguin

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.

Sight of shore

Love and Light,


Out with the Old….

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

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,



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

Deeper Meaning….

Christmas is fast approaching, here is my challenge to those of you who celebrate it.

Show Your Hope!

Christmas will be here in just a few days.  The chaos of shopping, wrapping, cooking, cleaning and getting lost in the commercialism of it all is ALMOST over…


Soon, our children will be sleeping with visions of sugarplums dancing in their heads….


Awaiting the arrival of “Santa Claus” and a plethora of gifts – many of which they don’t even need.


Somehow, along the way….we’ve lost the true meaning and we’ve gotten sucked into the materialistic clutches of society.

"Black Friday" Marks Start Of Holiday Shopping Season

Even the best of us get caught up in the tradition of shopping til we drop, giving more gifts than necessary, and pushing the true meaning on the back burner….


Over the next few days, I want to challenge you all to look a little deeper into yourselves – reconnect with the true meaning of Christmas…


And remember that this season is about the birth of our Savior and Lord, Jesus…

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