Hope is a Journey….

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
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)
Silly moments
Special Memories
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!


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