Hope is a Journey….

Archive for December, 2011

A Year in Review

As 2011 draws to a close, I find myself reflecting over the past and preparing for the future.

2011 came in with a bang and I had a feeling it was going to be pretty unrelenting from the moment the clock struck 12:00 a.m. as I rang in the new year with my husband by my side in the local ER while Sasha had a GI bug at home and was being cared for by Chelsea and Keith. I knew that 2011 had a lot to teach me, and I had a feeling that none of the lessons would come without a price.  I could go into detail about my my numerous hospitalizations, changes in physical ability, increase of limitations, constant stream of medical heartaches and news that never seems to get any better, lack of employment, financial stress, family strain that one medical crisis after another undoubtedly creates, anxiety that looms when the unknown rests it’s ugly head on your shoulder, frustration that mounts when you never seem to catch a break, fear that screams you to sleep at night as you try to ignore the realities at hand, sadness that pours out of you as you watch your children struggle and you are powerless to stop it…..I could write hundreds of pages about this….but I won’t. I could on for hours about how much it shakes your world when the people you love and care deeply for struggle and are held captive by this monster of a disease.  I could weep for what feels like an eternity over all the precious lives that were lost this year to Mitochondrial Disease (and other diseases)…but I won’t.  I spent a lot of time coming to terms with all of this and did a lot of reflecting on that in this blog post.

What I want to talk about in this post is the incredible beauty, blessing and joy I found on my journey through 2011.  Through all the hard times…through all the suffering – great love, compassion, and strength were born.  Out of the darkest moments, this amazing light guided the way.  In the most violent of storms, great peace became a shelter.

No, it was not all for nothing…even if this year was one of the hardest I have ever faced – I grew, I learned, I wept…and I saw incredible beauty blossom despite what felt like the coldest and unforgiving winter of my life.

I found that true friends are hard to come by…


And new friends bring new joy…


I learned that, even when life is at it’s darkest –  love, friendship, and faith can light the way…

And even though obstacles arise,where’s there’s a will….there’s ALWAYS a way….

Planning IDF Patient Meeting
Co-Chairing a successful Anti-Recall Campaign with Angie Taranto
Recording my second album at Wonka Sound
Running the Show of Hope with Chelsea Hertzog

Running the 4th Annual Promise of Hope Wine Tasting with Michelle Fox

And as for all the ‘not so great stuff’- sure, it happened…but it didn’t stop me, it didn’t destroy me, it didn’t break me…it slowed me down…but ultimately – it made me stronger, wiser, more focused and more grateful for all the things I DO have.

And speaking of all the things I do have…..this is a wonderful opportunity to share with you all some of my favorite moments of 2011…

Just the girls after a day of sledding…
Fantastic Music

Compassionate Hearts

New Heroes to look up to

Singing with my beautiful children (on more than one occasion)
Going to Capitol Hill with Ralph and the Immune Deficiency Foundation
Like mother like daughter
Mother’s Day
Snuggle moment
Living the Dream Country Throwdown VIP’s
Coming Together and SUCCEEDING Against All Odds
Celebrating my 10th Wedding Anniversary
Enjoying freedom because of Beast
Recording with Bob
And Yahuba (again)
And Kurt….
And Dave
Hurricane Sleepover
Weathering any storm together
Recording a song with Dave, Jeff and the rest of Air Traffic Controller
First day of school (1st and 3rd grade)
Sweet Moments
Apple Picking

Sending off that first shipment of my 2nd album, “Unleashed”

Having my album debut on the radio (WCAP) AND sharing air time with Dave

Playing at the Lowell Memorial Auditorium
Singing a duet with Dave on stage
Sharing a stage with Liz Longley and Gus Berry
Sharing the stage with Air Traffic Controller
Sharing Hope
Special Moments
Lasting Love
Birthday Memories
Having my friends support something that is important to me
Celebrating Beast’s 2nd Birthday
Pumpkin Armada with the Chelmsford Open Stewards
Super Beast
Halloween Fun
Love
A Sweet Welcome Home
First lost tooth on Halloween at Joanne’s House
Thanksgiving Surprise
Decorating the Christmas Tree
Elf on the Shelf antics (click on this picture to see the rest of them)
HUGS
Silly moments
Special Memories
Surprise
Pure Joy

Me, I’m looking forward to 2012.  I don’t know what this new year holds, but I am determined to make the best of it no matter what.  I dread the thought that any more hardship will come our way…but I know that, if it does – we will make it through, we will grow stronger, we will overcome, and we will heal.

Honestly, I don’t believe in resolutions, but I do believe in re-evaluating life from time to time, and the start of each new year is a good time to do so.  It’s healthy to make goals or even just to dream.  I decided that, this year is going to be the year of exploring new things and going out of my comfort zone…as well as teaching my children how to bathe in joy and laughter even when things are tough.  Life’s too short to hold back.  None of us know how long we’re here on this earth – with or without a diagnosis that is considered ‘terminal.’  I want my kids to remember that we LIVED and LAUGHED more than the fact that we struggled.  Each moment is precious…not promised.

With that in mind, here are a few things I had contemplated:

  • Learn to play a new instrument – maybe the Cello (yes, I know, a daunting task) – expand my horizon
  • Get back to writing (music and poetry)
  • Publish my book finally (it’s already written…I’ve just been too lazy to publish it)
  • Make special memories (Trips to the beach, forest, nature walks, mini vacations)
  • Grow closer in my relationships with friends and family
  • Work on my 3rd album
  • Start playing house concerts and maybe a few other venues
  • Maybe even start a band…..  😉
  • Try new things (abandon fear!)
  • Engage the family in more community service (especially with the Chelmsford Open Stewards)
  • Get healthy enough to not need my PICC line!  🙂
  • Be strong enough to start biking and hiking again (two things I’ve missed doing the most)
  • Spend more time disconnected from the computer and more time connecting with my kids and my husband
  • Maybe go back to school and finish my degree (I’m SO close to a double major with a 3.875!)
  • Learn to slow down…

I have been very blessed to have had over 3,000 hits to and 936 followers to this blog since September!  I want to take a special moment and thank you all for reading, following, and joining me on this journey.

My final thought to you this year:

What I’ve lost, what I’ve gained

There was so much love

And so much pain

But through it all

I always knew

That I had strength to make it through

And the things I’ll face

And the things I’ll fear

Will never again

Make my path unclear

And the ones I love

Will always know

That my unfailing devotion

Will always grow

With all I have and all I give,

I promise to laugh, to love, and LIVE!

Wishing you all a SAFE, BLESSED, and JOYOUS New Year!

Love and Light…see you next year!

Stefani

What’s in a day????

As we fast approach the last day of 2011,

Many of us are tucking away the events of this past year and are beginning to look ahead to the year to come.


I often wonder what is so magical about January 1st.

What is it about that day that makes people so willing to abandon their vices and past troubles that they’ve carried and been captive to for the past 365 days…

And be able to cast them off miraculously – as if they suddenly were immune to the hold it had on them not even 24 hours earlier?

Maybe it’s the idea that starting fresh with the first month of a new year

Will suddenly give us this great power or this mysterious ability to be able to take that step that we somehow couldn’t take on any other day.

It’s true, I too have even fallen for the allure of New Year’s Resolutions….and probably continue to set new goals with the start of each new year (yes, a blog about my ‘new goals’ will be posted here in a few days!)

But I have a different view on the day.

You see, as important as January 1st is, it holds no greater power than March 8th, July 25th, September 1st, November 12th.  All of those days are days in which we can start fresh and anew.


The day itself doesn’t hold the power…YOU do.

The HOPE isn’t in the day…the HOPE is in YOU!

So go ahead and make your resolutions…

I think it’s great to set realistic goals…

and even a few that may be unrealistic,

It keeps us moving forward with something to desire to achieve.

It keeps our feet on the ground

And our hearts pure.

Succeeding

And falling short of our aspirations

Reminds us that we are alive…


And only human.

Nope…there’s no harm in setting New Year’s Resolutions…

As long as you remember – it’s not what’s in a day that matters…

It’s what’s in YOU that matters.

Love and Light,

Stefani

(P.S. – And yes, after saying all of that…I will still be sitting down and writing a few goals…and dreams of my own to share with you all as the New Year begins…stay tuned!)

The best things in life aren’t ‘Things’

With Christmas on the horizon, my thoughts have been drawn more to the emotional aspects rather than the materialistic chaos that usually ensues during this season.

I think that we often get caught up in the frenzy of shopping, decorating, baking, and wrapping…

And lose focus on the things that truly matter.

We forget that, in the end, life isn’t measured by what we have…

it’s measured by the love we give, the compassion we embody, and the times we share with others.



You see, these things are the true gifts we can give to others – not just on Christmas, but EVERY day.

For some, they need this love, compassion, and company more than you realize.

For others, Christmas (and many/all of the other holidays) is a very sad and lonely time.

These ‘special days’ are often painful reminders of loved ones missing…

Or loved ones suffering during a time that should be joyous and carefree…

And some just feel like they have nothing left to celebrate….

So remember to take time to give comfort to those in need.

Pray for their sorrows to ease and that the sun will begin to shine again on their horizon.

Give some of your extra time to brighten a person’s day.

Just think about how you’d feel if you were in need….

and someone took the time to just GIVE…

You see folks, Christmas isn’t just about what you get,

it’s about what you GIVE….

It’s not about how many presents are under the tree…

It’s about the what is given from the heart.

Truly, the best things in life aren’t ‘Things’…

And….as we celebrate Santa’s gifts,

Remember that the true gift is the birth of Christ Jesus.

May you all have a Blessed and Merry Christmas as you give freely,


love deeply,

and celebrate joyously.

May Peace be with you……

Love and Light,

Stefani

With Courage

In the midst of the darkest times in our lives –  it is by faith that we see, courage that we fight, hope that we persevere, and love that we survive.

Last Friday was a very dark day for our family.  I was traveling home from an appointment at the Joslin Clinic with my aunt and my Mito sister Liz when the cell phone call came in.   I was exhausted from an unexpectedly long day and irritated because I was, once again, stuck in rush hour traffic.  The voice on the other end of the line was that of a physician calling with test results regarding myself and my son, Will.  He called to tell us that both Will and I had moderate Complex 1 deficiencies  and that this, combined with the POL-G1 mutation solidified the diagnosis of Mitochondrial Disease  for BOTH of us.

Even though Will and I shared the same gene mutation, none of Will’s doctors had given the diagnosis to Will as they were still trying to make sense of what his other MtDNA mutation meant…and, even though we now have the RIGHT answer as to why Will is struggling and has been having a lot of continued (and also new) issues – it certainly doesn’t feel good by any stretch.  It feels horrible, actually.

For a few brief moments as I inched along on route 128 heading home, I found myself feeling like it was just too dark to even think about seeing any sort of light ahead.

I mean, it’s easy to tell yourself over and over that everything will be okay – but sometimes that sentiment gets overshadowed by the fear, the anger, the guilt, the sadness.

I was really hoping that maybe the doctor was going to tell me that everything looked wonderful and that we were on the wrong path, but those were not the words he said and they hit like a ton of bricks.

There was no mistake that the phone call came when I was with two very supportive and loving people. I can’t tell you how important it was to me that I was able to be with them when that news was delivered.  They were so loving, calming, and compassionate.  It meant the world to me.

And, while I was waiting to tell Ralph, I asked for prayers and positive thoughts from my friends…though I wasn’t able to get into details….and, without hesitation, the prayers poured in…..

And one stood out.  A friend wrote:  “Dear God….you know….Amen.”

It gave me great pause because, even as I sat anxiously waiting to tell Ralph, I felt the same way. I didn’t know what to say, how to say it, and what to be asking for at that moment.  Should I ask for comfort – even though I clearly have much more to rejoice for than to weep over?

Should I ask for forgiveness – because I am angry that, once again, another obstacle exists in our lives?

Should I ask for strength – even though I know God always has provided it every step of the way?

Should I ask for wisdom – even though no matter how much I understand, know, or can express – nothing will change the reality we are facing.

Truth was…..no matter what I thought I needed to pray for….that statement kept running through my head reminding me that GOD knew what I needed, and He would give it to me when I needed it.  And so, I prayed….and God Knew….


It broke my heart to tell Ralph that Will definitively has a diagnosis and that the diagnosis wasn’t good.  I could see the hope crumble in his eyes and it just killed me to be the one to speak those words.  Sometimes I wish we had some type of sign to show us the way when nothing makes sense anymore…

The next thing we needed to do was tell Will.  He’s old enough to understand and smart enough to catch on…but HOW in the WORLD could I take such sweetness and innocence…

And saddle him with the weight of the truth?

He deserved to know and we had faith that God would give us the right words to help him understand.

And…when we sat him down and told him, the words came, and they were exactly what needed to be said…nothing less and nothing more. He embraced it with maturity and a sweet innocence that melted and broke my heart at the same time for I knew that the road ahead would likely be one that was not going to be as innocent or sweet as he is.

He knows what this disease is capable of as he’s seen those he loves dearly and friends he’s come to know battle valiantly, but Ralph and I assured him that he would never be alone on his journey, and that we would be tough when we needed to be, cry when we needed to, and laugh as much as the moments would allow.


And he took great comfort in the fact that he wasn’t alone on this road…

And no matter what we would have to face…we’d learn to find joy in every sorrow

Cause even when things go downhill, how we travel down is up to us….

What matters most is that Will (and Sasha) knows this:

No matter what….as long as we have each other – we can get through anything.

And I mean….ANYTHING…..

You see, COURAGE isn’t about being strong or brave all the time…it’s about knowing what lies ahead and facing it anyway….even if you’re shaking in your boots.  Will possesses that type of spirit and is one of the most courageous boys I know.

Courage is bravery in the face of uncertainty

But you see, to be courageous…you don’t have to face life alone – and there is no shame in needing help, comfort, encouragement, or a reality check…truly, there is strength in numbers


Isn’t that what friendship and family is all about?

And while there was such an amazing outpouring of love and support for us as we tried to come to terms with our new ‘normal‘ – I can’t help but mention how much it truly hurt to NOT have the support of some of our friends and family when we needed it most.

I’ve felt this way for a while, but never have taken the opportunity to come out and say it plainly.  Guess there’s no time like the present, right?

SO….

To all the people (and not any one person specifically) who have taken a seat on the sidelines watching my life play out like it’s some spectator’s sport….this is for you…..

I often wonder why people you share so much of yourself with can be so markedly absent when you need them most.

I wonder if you realize just how tough it is to face heartbreaking realities – and just how much it hurts when you are noticeably silent….

And maybe the news is hard for you to hear….

And maybe acknowledging it is too painful for you….(Imagine what it’s like for me? For Ralph?)

But no matter how hard you try to ‘not hear’ or ‘try to ignore’ – it doesn’t change the fact that the reality of what we’re going through exists…we are LIVING this reality, and we NEED you.

Maybe you’ve never had to deal with something like this….

Maybe you can’t be bothered because you just don’t want to deal with anything that isn’t convenient for you…

Of course, we’d all like to live in a world where everything is perfect and carefree – wearing our rose colored glasses to view the world around us….

Well, I hate to break it to you – but LIFE happens…whether or not you’re ready for what gets thrown your way

I truly hope and pray that you NEVER have to fight for your life, the life of your spouse, or worry for the life of your child…

It is the worst feeling ever…

And I hope that, if you do….you will find the support that you were not willing to give us…

Until then….please do your best to not judge how we are navigating our way through this….

And I’ll do my best to remember that there are SO many other wonderful people out there who have been everything that you are not….and I will count my blessings daily for that. It is a priceless gift.

To all my ‘gifts‘ (you know who you are) – THANK YOU for always being there, never giving up, and forever staying true…..this was one of the hardest weeks of my life and I am so grateful that you were there with me through it.

Love and Light,

Stefani

Through Thick and Thin….

To all of my friends who have rejoiced, celebrated, struggled, screamed, laughed, raged, and wept in the face of losing “Normal” – you are amazing, incredible, inspiring, and uplifting.  Even in our darkest moments while we are struggling to find our new “Normal” – we are able to hold on to the one thing that matters…our friendship.

It doesn’t matter what the journey is, what matters is that we walk it together.

We can’t dictate the path that lies ahead of us, but we can choose how we view the path.

To see the people you love face a serious battle is truly heartbreaking – and often, when the going gets tough….people start to disappear.

I think that one of the most beautiful things in this world is to be a witness as the beauty of true friendship and unconditional love blossoms.


So here’s to all of you folks out there who have stuck by a friend in need…no matter how hard or long the road is.



You can’t truly appreciate the good times without enduring the bad times….and yet, in the bad times (yes, even the worst of times), there is something to be said about finding a way to still rejoice in the precious moments that shimmer like a diamond in the rough.

This post is a tribute to all the friends in my life (in photographs and not in photographs) who have stuck by me through it all.

You have no idea what it means to me to know I have such amazing people in my life.  I honestly don’t think words could ever even begin to describe the depth of my gratitude and love towards you all.

AND…to my dear friends…what can I say?  You all are so incredibly special, so unique…SO worth sticking by…through thick and thin.

No matter how tough the road ahead gets…’All you need to know is….I’m never gonna go…..away. ‘

Love and Light,
Stefani


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