Hope is a Journey….

Archive for September, 2011

To Live….

To Live:  To have life; be alive; be capable of vital functions to direct or regulate one’s life.  To experience or enjoy life to the full.”

This past year, I have done exactly that.  I have touched the summit of the mountain of joy and fought desperately to rise from rock bottom.  Through highs and lows, this past year I have “Lived.”

Far too often people go through the motions in life and merely ‘exist’ – sometimes it’s a choice and other times it’s something that you fall into without even knowing it.  It happens slowly and subtly…and before you know it, LIFE is passing you by.

I had some hard lessons this past year…

I learned that even though people say they’re your ‘friends’ – that’s not always the case, and even those you’ve reached out to help can be vicious, hateful and hurtful.

I learned that REAL friends won’t believe everything they hear and will actually think about the things they’re told and go to the source and ask questions and see things for what they are…and those who believe everything they hear through an ever changing grapevine of lies – you just don’t need them.

I’ve learned that a lot of  people will sing your praises and be kind to you as long as you have something to offer…once they no longer need you, the things that are important to you no longer matter to them. (that was a tough pill to swallow)

I learned that, no matter how hard you try…you can’t please everyone all the time – and, no matter what you do, there will always be someone out there who will find fault with it.

I learned that I am stronger than I ever knew I was.

I learned that even in our deepest suffering there is divine beauty, even if we never see it or are unable to see it through our own pain….it is still there.

AND….despite those hard lessons, I also learned some pretty incredible things…

I learned that what you do with what happens to you matters more than what actually happened.


I learned that you don’t need to be everything to everyone….but what you are to someone can make all the difference.

I learned that love can run deeper than you can ever dream, and despite the toughest of times, love can light the way.

I learned that joy is all around me – I just had to refocus my view.

I learned that NOTHING is impossible….even if it seems that it is…

I learned that HOPE is contagious.

I learned that pain is relative.

I learned that fear can consume you…if you let it.

I learned that letting go and getting it out is not only freeing but it is healing….

I learned that, even during our most difficult times, we can still find our way through them without losing ourselves.

I learned that things don’t always go as planned, but they go as they are meant to be.

I learned that we can make the best of the worst….

Some people think about their birthdays and they cringe…they get depressed…they become somber, or fall into a deep denial that another year has come.

Me, I  think about my birthday and welcome it with open arms.  I guess that, when you are told you have a disease that can take your life – you look at things differently.

You see, every day that I put my feet on the floor is a good day and it’s a day that you celebrate and do your best not to take for granted.

SO today, I welcome my 34th birthday with gratitude because I know each day is precious, not promised.

This afternoon at the lake...enjoying the breeze. Life is good!

Here’s to another year!

Love and Light,

Stefani

There’s a first time for everything….

September has been a whirlwind of a month for me.  A LOT happened in September – it was crazier than almost any other month I’ve had this year!

Looking back upon the past 25 days, one phrase keeps echoing in my head:  “There’s a first time for everything…”

You see, September was a month of “Firsts” for me – some of them were INCREDIBLE…..some were scary….and some were challenging…..but I learned and grew so much from each of my ‘Firsts” – – – – – – >

∞My first Kickstarter Campaign came to a successful end having raised 333% of my original goal  (Which I am now getting ready to deliver all the rewards to those who pledged!)

∞I tirelessly worked to complete my goal of creating an album that was a huge deviation from my comfort zone.

∞I also recorded my first duet with an incredible musician, Dave Munro.

∞I created my first ‘band’ shirt!

∞ I recorded one of my songs with Air Traffic Controller

∞ I planned my first ever music benefit concert with my best friend and soul sister, Chelsea Hertzog!

∞ All 4 of our close knit group – (My Mito Sisters) were in the hospital at the same time…

∞ I even finished planning the Show of Hope from my hospital bed – while teaching Will and Sasha that we really can achieve our dreams even if there are obstacles

∞ I had my first PICC line placed…and had to learn how to navigate around without my IV tubing getting caught on everything (for those who know me, I am not the most graceful person, so this was and still is a huge adjustment!)

∞ I got to meet some really great people in person FINALLY!

∞ Beast became a Hero’s Sidekick….

∞ I was featured in Boston Music Spotlight Magazine and Show of Hope was featured as a ‘top pick’ for the weekend!

∞ Chelsea and I shared our story and it hit the local papers trying to raise awareness
Chelmsford Patch Article
Chelmsford Independent Article

∞ Songs from my new album were played on the radio and I got to share some air time with Dave Munro, Casey Sullivan, and Liz Longley on WCAP!

∞ I got to perform at the Lowell Memorial Auditorium (not many people can say they’ve done that!)

∞ I got to share the stage with my 2 heroes

∞ I got to sing my first ever duet on stage with Dave Munro!  (And he was awesome!)

AND….If you want to hear both of these performances (and a few more) – my friend was gracious enough to post them on youtube for me:

Loud and Clear

Not Alone

PS…if you like what you hear, you can purchase the new album, UNLEASHED online by going to www.hoperisingmusic.com

∞ My album released at one of the greatest ‘Release Parties’ I could ever want!

∞ And I got to share the stage with some incredible people



Photograph Courtesy of Mark Battle * http://www.markbattle.com


And most importantly…..

∞ I got to spend some time with some close friends….and begin new friendships….and SHARE my HOPE with SO many others!!!

(To see more pictures of the Show of Hope through the eyes of my friend Nicole by clicking HERE!)

As September comes to a close, I will kiss the month goodbye with my 34th birthday.   I am looking forward to beginning another year filled with promise, love, joy, and HOPE!

Thanks for peeking!

Love and Light,

Stefani

If this were your child….

Every 30 minutes, a child is born who will develop a
mitochondrial disease by age 10.

Each year, 1000 to 4000 children in the United states are born with a
mitochondrial disease.

80% of children diagnosed will not live to adulthood.

If this were your child….would this statistic be acceptable to you?????

Please take a moment to listen to this song and watch the video I created to honor all of the children who did not live to adulthood.

While adults are affected by this disease, TODAY….I am remembering the children.

Today I light a candle in memory of all of the “Little Birds” who have lost their battle with Mitochondrial Disease.

“We are, each of us angels with only one wing; and we can only fly by embracing one another.”

This song comes from a very special place in my heart.

We all are “Little Birds” in our own right. Some of us have had years to grow our wings, some of us grew our wings before we were ready to let them go…and still others have not yet discovered their wings or even tried to fly.

When I decided to create a video for this song, I reached out to several families who had lost a loved one to Mitochondrial Disease. Each family graciously allowed me share with you all a very personal look into the lives of their precious ones. It is an honor that I will cherish and I can only hope that I have been able to relay to you just how much each of these children have changed our world before they left their earthly nests.

Emma Dalton, Eithene Hilliard, Brittany Wilkinson, Isabella (Ella) Magee, Bridget & Dominic Nuccitelli, Parker Harmon, James McKay, Maggie Agnew, Alexis Roung, Ellie Wilkinson, and Madison Grantham – and every other “Little Bird” who has ‘journeyed to the shore’ – each of your lives have shined a beacon of light into our hearts. You will forever live on in spirit carried on the wings of our love.  It is today….and EVERY day that I will remember you, and all of those who have fought and lost their battle to Mitochondrial Disease.

I will continue to fight for a cure for Mitochondrial Disease….this is why I am doing the Show of Hope with Chelsea. Please consider supporting the event – you can either buy tickets online or simply make a secure donation towards the event.

One life lost is too many……

Never Forget

To learn more about Mitochondrial Disease, please visit: www.umdf.org

Love and Light,

Stefani

%d bloggers like this: