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

Home Sweet Home – AND – Did you know??????

I was FINALLY discharged home yesterday afternoon.  Needless to say, there was a good 24 hours that were pretty scary for me there – but I am happy to report that I am feeling much better.  My PICC line has already proved to be helpful in blood draws and hydration – but I am honestly quite worried about the risk of infection – so I hope to not need it for too long…fingers crossed.

I came home anticipating a quiet and simple transition back to ‘home life’  and my ‘welcome home’ present was that Sasha was sick.  It’s looking like another sinus infection – so we’ll be heading to the doctors tomorrow morning.  She made it 7 full school days before getting sick….looks like it’s going to be an interesting year.

In other news – 2 of my 3 ‘Mito Sisters’ are out of the hospital (yay!).  I’m really praying that things get better soon for Chelsea – she was moved out of the ICU earlier this week and is awaiting word on what the next step is.

We did, however, make it out to see her early today….it was a nice (unfortunately too quick) visit.

Our Mito Gang: Sarah, Chelsea, Mighty Matthew, Me, Beast, and True

Chelsea's "Med Grid" - Imagine having to pull that thing around everywhere you go?

 

It’s a busy week ahead……There’s only 5 more days until Show of Hope!!!!  I am really excited for the event and am hoping that my friends and family are able to make it out to support an event that is so near and dear to my heart.

Tickets are on sale NOW – click HERE to purchase tickets! Can’t make it that night?  You can make a secure donation online to support this event by clicking HERE!

DID YOU KNOW?????????

Today marks the start of Mitochondrial Disease Awareness Week.

What Mitochondrial Disease Is…

 

Many people don’t know what Mitochondrial Disease is…so I will be posting daily here all week to try to help you understand this disease more….

“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.”  (Courtesy of UMDF)

Please take the time to watch the above video created a few years ago by a friend…it’s a pretty accurate and sobering description of this disease.

Love and Light,

Stefani

No Place Like Home….

There really is NO PLACE LIKE HOME…and that is exactly where I am NOT updating you from.   The good news is that 2 of the other 3 ‘Mito Sisters” have been discharged from the hospital.  We need to devise an escape plan to get Chelsea out of Mass General and me out of Lowell General and life will be as it should be!  When I was admitted on Saturday, I didn’t think that I’d have to stay this long – I figured it was a routine ‘tank up’ ER stay (usually last 2 days tops), but my body had other plans.

Usually my saving grace...

My blood pressures went extremely low (79/49…and for those who don’t know, they don’t like blood pressures that are below 80’s/50’s….just not a great place to be) despite being on constant IV fluids since Friday (at home – and that should have bolstered my blood pressures up – and always has in the past) and my blood sugars had been hovering in the low 80’s and falling into the 70’s with only a little time off the IV dextrose drip (for most, this is an okay range, but it has been well documented that I am symptomatic in the 80’s and 70’s). This did not give the hospitalist the warm fuzzies and it continued to be the only hindrance to my discharge since Monday.  The doctor tried 3 times to take me off the Dextrose and Normal Saline – that was a huge FAIL the first two times) – it was successful for a good while (my sugars dropped twice below the ‘acceptable’ parameters’ but I managed to convince them that we could check again in a few minutes to see what it was doing and, if we went up, we’d leave it (my IV had blown and I didn’t want to get stuck again).  My morning was pretty good – other than some crazy shortness of breath (pressure too) early this morning  – everything *except* my blood sugars was cooperating nicely.  At about 11 a.m., we hit the third time they dropped, and I got so ill from it that the doctor began the discussion again about having a PICC line or a Mid-line placed.  I was not thrilled with either of these interventions as they both pose significant risks, but everyone felt this was the best thing for me at this point.  The plan was to get the line placed, get an x ray to confirm placement and then go home (discharge planning had already occurred).

I can’t even tell you how freaked out I was to get it placed, I’m not a fan of ANY medical intervention (pills, procedures…just the one thing that sends me right off the edge), but the lady did a great job and the PICC is in, phew!  I developed significant shortness of breath again just after the procedure and it continued for more than an hour – all while my O2 sats were stable and my heart rate was low (so not anxiety…heck the hard part was done).  After a while, they decided to check vitals – my temp was just about 100.0 – and for those who scoff at this, my temperature averages  97.5 – and that’s what they’ve seen here – maybe a few points over the 98.0 mark in the past 72 hours, but that’s it). Then, they got me up (nature calls you know!) and my heart rate more than doubled – to the point that the charge nurse (who is fabulous) brought me back to the bed (the plan was to go the bathroom and then do a short walk to watch my O2 sats).  She went out of the room and returned 5 minutes later and said, “Hon, you’re not going home, sorry – but you just aren’t okay enough to go home tonight….”

During that moment, there was this very aggressive “REALLY?” and some other choice words roaring in my head…..and I just wanted to cry.  I’m so frustrated because I have SO much to do to get ready for Show of Hope (and my other partner in crime who is running this event is in the same boat as me in MGH) – so if any of my local friends/family can help with this, we really would appreciate any and all help (putting out fliers, trying to collect raffle items) that we can get….just shoot an email to showofhope@aol.com

SO…that’s it.  My arm is sore, I’m bummed out and bored out of my skull.  The ONLY bright spot in this is that Bob is mastering the CD tonight and he will be sending me mixed versions for approval as he goes along….so I have SOMETHING to look forward to (since going home, seeing my kids and the rest of my family, and sleeping in my bed are not options right now).

Okay…totally done my pity party…I just needed to whine a bit.  I know it could be worse and I know that this is nothing compared to what a lot of people I know go through, but for me – right now – the timing of this couldn’t be worse.   This Mito thing sucks…..big time.  

Friends ask me what they can do to helpDo you want to know what will help me?  Come to Show of Hope…..if you can’t come, make a donation towards the Show of Hope from our secure donation page….tell everyone you know about Show of Hope and tell them they can purchase tickets online (and be entered into a special raffle exclusive to online ticket purchasers)…help me raise money to find a cure for this disease – it robs SO many of SO much.

Thanks for letting me have my Negative Nancy Pants on…..I’m sending them home with Ralph to put in the laundry.   😉

Over and out….
A very Stir Crazy Stefani

Together…but apart

My “Mito Sisters” and I like to do lots of things together. We met because we all share the same diagnosis of Mitochondrial Disease.  Although that was what brought us together, we learned that there were so many other wonderful and amazing things that we could do together and our closeness has been a closeness that has been such a blessing in my life.  We were able to understand the struggles but, more importantly – together, we were able to overcome them….
We like to laugh and enjoy time  together….


We like to go sledding together..And Celebrate Holidays Together….

We like to celebrate special moments with each other

Run fundraising events together…

And when hard times come….we are there for each other…
But these past few days have been ones I never want to relive….all 4 of us have been in the hospital at the same time….together, but apart…..

It has been incredibly hard to know that the people that you care about most are struggling and you can’t be there…by their side….bringing comfort, support, care, smiles,  and strength.
This is how it’s supposed to be…..all of us together…..

These past 4 days have been a reminder to me of just how unpredictable, powerful, and unmerciful this disease can be…..and a reminder that I should  continue to cherish ALL the precious moments as they come and to never take anything for granted….

Sending love and prayers to my sisters….and all of those who are struggling, hurting, and in need of support tonight….

Stefani

I think I see gold

Sometimes there’s just nothing you can do to stop a train from derailing…and when it does, there’s nothing you can do but brace for impact and pray for the best.

The past few weeks my body has been struggling, and I’ve admittedly been busier than I should have been, but there are deadlines to meet, things that can’t wait, and living to do.  Quite honestly, I’ve been frustrated at my body and my situation more so than I’ve ever been. My most recent hospitalization actually had nothing to do with how busy I have been – but is a result of my body just not able to keep up with every day functioning which I hope to get under control SOON so I can be discharged and go home and sleep in my own bed.   I don’t know if I’ve ever shared how I really feel with you – and since I’m feeling pretty raw about it all, now is as good a time as any…and I absolutely do NOT want sympathy or pity….I just feel like sharing what is on my heart is what I should do right now – because that’s what friends are supposed to do with each other – be real, honest, and compassionate with each other.  I know many of you can understand this – and I hope that those of you who didn’t understand will come to see things in a different light.  While this is a pity party free zone – this is also a reality check zone….so enter at your own risk! 😉

Many of you see me and the things I do – and you comment on how ‘positive’ I am and how much I do. While it is so kind and it’s sweet of you all – I want to set the record straight.  I’m no heroine (though maybe at times I want to believe I am “Super Stef“), I’ve got my faults and my own struggles and I just live every day the way in which I feel I am supposed to.   I do what I do because I love it…because I want to….because I feel called to…and even because I sometimes I don’t know what else to do.  I can tell you that I am sure that I keep busy as part of a coping mechanism – cause there are days that, if I sit still for any length of time, everything would hit me at once and I’d certainly crumble.

I’ve gotten comments from people who have been well meaning – and some, even judgmental because they have their own idea of how I should live my life.  Some things are said out of love, some are said out of frustration, and some are said out of ignorance.  Truly, I get it – if you’re not living it, you just don’t understand what it’s like to have everything you are/were/want to be ripped from your hands with little warning.   I know many folks who have been through similar or worse situations…so I know I am not alone in how I feel – but it’s still hard nonetheless.  And I am, by no means, playing a pity violin….I believe my life is how God intended it to be.

I am an independent person – well, I used to be.  I took pride in all that I could do on my own.  I really took that independence for granted.  Over the last year and a half, things started to change for me – and as much as I tried to ’embrace’ the change – deep down inside, it is incredibly hard to accept it. I don’t know many people who would be okay with facing the loss of their independence….they would ‘rage against the dying light‘ – and, for me, right now I am holding on to every shred of independence that I have left with every ounce of strength in my being.

I am a fighter.  I don’t like being told what to do (and those of you who know me know this well!) and I don’t like having limitations set on me.  There’s a lot in my life I have no control over – so, the few things I DO have control over, well – I hold tightly to those….and one of those things is what I choose to do with/for others.  Does it put extra stress on my body? YES!  Is it not always the smartest thing to do?  NO!  Will I do my best to accomplish what I want to do AND take care of myself as best I can?  YES! Will I do this flawlessly every time?  PROBABLY NOT!  See folks, life is about LIVING – and if I stop doing what I feel I am supposed to be doing….(scratch that) – was put here on this earth to do….then I am no longer living, I am merely existing – and that is something I refuse to do.

No matter how hard I try to force myself to believe that this disease can’t take anything from me and that it doesn’t bother me – the truth is a glaring splinter in my heart – IT HAS and IT DOES.   There are days in which just getting up and emptying the dishwasher feel like a triathlon.  There are days in which getting out of bed is near impossible because my blood pressures are so erratic.  There are days in which I can’t go outside and enjoy some time with my 2 children because I am physically unable to.  I am not supposed to use the shower alone anymore because I’ve had too many encounters with the floor.  I am not able to run and keep up with my family like I used to despite months of hard work, physical therapy, and wishful thinking.  It’s hard to be so young and have so much to contend with – but I know that I am truly still so blessed with what I do have.   Just the other day I watched quietly as my amazing husband was playing in the pool with my kids (it was entirely too cold for me to join and I was wiped from a full day of work and phone calls) – it was a bittersweet moment watching as my husband and 2 children laughed joyfully together without a care in the world – it hit me that a lot of things they do now are without me now because I just can’t do them anymore.  I say bittersweet because, in that moment I realized that, if anything happens to me, they’ll be okay…..BUT…it just felt like they had moved on in some ways without me already.  It is moments like these that the reality of the fact that this disease HAS taken SO MUCH from me hits like a freight train and I just can’t stop it.  I’m angry that ‘life‘ the way I knew it no longer exists. I’m sad because I can’t participate in ‘life‘ like I used to.  I’m afraid because I don’t know what lies ahead.  I do have HOPE though….I believe that everything happens for a reason – and that God’s Grace will never lead me where God’s Love cannot comfort me.

Don’t get me wrong – I don’t think like this every day – it’s small moments that hit at random times that just catch me off guard…like tonight, as I sit here in the hospital bed sitting in darkness…it’s quiet here and I feel like I could just disappear into the quiet of this room.  It is peaceful…but also painful when you sit and be still sometimes.

And when I feel at my lowest, I remember just how good I really have it.  I have 2 wonderful parents and a supportive aunt – plus an amazing husband and my 2 precious children…and who can forget my incredible soul sisters and all the wonderful people that God has put into my life to carry me through the dark times and celebrate with me through all the joyful times.  I am truly blessed.

When things get their hardest, I find myself reciting the words to the song below as my mantra….so I felt the need to share it as maybe it will help a few of you through your tough days.

Have no fear friends….life will continue to go on – I will not give up, I will not give in, I will not stop now – cause I think I see Gold.

I Think I See Gold (Ray Boltz)

I see you struggling every day
You think, How long
Can I go on this way?
On and on
Again and again
Oh, when will it end?

You think, I just can’t go on
Much longer
But inside, my friend,
Your faith is growing stronger
You feel the fire burning
Deep in your soul
But I want you to know

I think I see gold
I think I see gold in the fire
Right there in the ashes
Is all you’ve desired
Oh, it’s hard
As you press toward the goal
Don’t give up
Don’t give in
Don’t stop now
I think I see gold

Until this moment
You’ve always believed
When life grew darkest
By faith you could see
Open your eyes
Look for the light
You see, you were right

These lonely hours
Like a fire refining
Something that’s precious
Something that’s shining
There in the darkness
Surrounded by coals
Is starting to glow…

Love and Light,

Stefani

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