Show Your Hope!

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

Burning the midnight oil…

Greetings from the studio!  Currently we are working on hour 5 in the studio this evening….with at least 3 more to go!
We’ve been having a lot of fun (as usual) here…I am excited to work with my good friend, Yahuba again (he contributed his amazing skills to the Hope Rising: The Journey CD)

And, of course….it’s always great to work again with Bob!

I have Nathan helping from clear across the country

And I even have some new faces working with me on this album –

Kurt and I have been friends for years and I am honored to work with him on this album!

I met Alex at  Whitsett Guitar while getting my guitar fixed…and when Bob (the owner of the shop) heard I needed someone to lay some electric guitar down, he shared it with Alex and he volunteered!  He did a fantastic job!!!! 🙂

Our goal is to get the percussion laid out tonight and fix a few things here and there….and then we have Yahuba’s friend coming tomorrow to play the  Fiddle and Dave from Air Traffic Controller coming to do a duet with me….it’s all falling together nicely.   At this point, all that’s left to do tomorrow is just lay down some vocals and add in additional music tracks on a few songs….but for the most part, I have 16 songs ready to go….hopefully they will all fit on the disc (you can only put about 75 or so minutes worth of music on a disk).

I’m pretty exhausted just thinking about the next two hours (and then some) and then doing it all over again tomorrow, but knowing that we’re in the home stretch gives me the push I need to make it through the next 26 hours!

I’ll update again from the studio tomorrow with progress……and hopefully, by the end of the week I’ll be able to update on the first day of school for the kids!

Don’t forget, all you local folks – Saturday from 9-3 in the parking of Kohl’s in Chelmsford, Team Hope & Children’s Hospital Boston will be hosting a blood drive.  I hope you’ll come on out and help us replenish the blood supply.  The need for all types of blood is critical!

Thanks for stopping in….if you want to keep up to date on the blog, you can click “Show YOUR Hope” button just under the “Follow my blog via email” header to your right.  I’ll be posting a few more times this week  so keep your eyes peeled!

Love and Light,

Stefani

Show YOUR Hope….

And so it begins…..

For a long time now I have wanted to write a blog.  With the hustle and bustle of everyday life, it has been hard to find the time to just sit and get things off the ground.  After being home bound for the past 24 hours hooked up to an IV for hydration, I was forced to ‘be still’ (I know, funny concept for me).  I used it as an opportunity to sit and do something that I wouldn’t have normally found the time for….and so, this blog was born!

*I do have to add….Chelsea was instrumental in getting the layout set.

What do you all think of the new “Show Your Hope” design we came up with?  If you really like it….you have 22 hours to get a limited edition “Show Your Hope” t-shirt through my Kickstarter Campaign (ends Monday morning at 11 a.m.).   Chelsea and I whipped this logo up the night that the ‘hurricane that wasn’t’ came through our backyard.

Okay…back to my post….

This is my ‘Birthday Month’ – and I have been doing a lot of thinking lately.  This year, I have decided to try and capture every moment – good or bad (but hopefully mostly GOOD!) as, once they are gone, we cannot get them back.  I’ve always felt that every moment matters, but after working on my latest music video and talking with the families that had been through so much (see the video), it really solidified that each moment is precious, not promised.

I am an avid photo hack – I usually carry my camera everywhere and often take pictures when you least expect them.  My nieces’ call me the photo ninja.  😉

I have a few really fun and neat things going on right now – 22 hours from the time this post is live, my Kickstarter Campaign will be complete! I started this campaign because I really wanted to finish my new album and have it ready for release by the end of September.  I set my goal low in hopes of achieving it – and, within 20 hours, I had surpassed it!   At this point, I have achieved 315% of my goal and can’t even begin to express what a humbling and uplifting experience it has been.  I never would have dreamed to raise as much for this project and will be utilizing every penny in hopes to release the album by September 23rd.

Speaking of September 23rd…..My best friend, Chelsea Hertzog and I have been working hard on a fundraiser that is so near and dear to not only us…but to so many others battling Mitochondrial Disease.  I have always wanted to do a music benefit concert (given my love for music and my belief that music is incredibly healing), but didn’t have the courage to step out on a limb until Chelsea said that she too wanted to do something different as a fundraiser for our cause.  With that, I set off on a mission (and for those of you who know me – when I put my mind to something, nothing stops me!).  I approached one of my favorite artists, Liz Longley and asked her if she’d join me on stage for this benefit.  Without hesitation, she agreed and we set the date.  I excitedly rushed home to tell Chelsea the great news – it was official – we WERE doing a music benefit for the UMDF!

What’s in a name???  Now that we knew we were doing this concert, we needed to come up with a name.  Chelsea and I were stumped!  We sat for days going back and forth about names…until we hit upon one that just seemed to fit perfectly:  Show of Hope.

The excitement was building – but we knew we had a lot of work cut out for us.  We began to look at venues….many were just too small for our event.  We wanted a place that would fit more than 100/150 people but less than 500 – and there just wasn’t something that fit perfectly.  One of our last venues we looked at was the Lowell Memorial Auditorium – within minutes we knew that this was the place!

About a month later, Ralph and I attended a concert at the Bull Run Inn to see Liz play.  When her set was done, we decided to stay…and boy were we glad we did!  The next band up was Air Traffic Controller (also known as ATC) – and they did not disappoint!  By the end of the concert, I just KNEW that they had to be on the bill for the fundraiser with Liz.

I sat for a week or two on it and then I took the leap and reached out to Dave (the man behind the band!) and asked him if they’d be interested in playing.  I knew he wouldn’t be able to answer right away as there are about 8 people who would need to weigh in – but his immediate response was that he thought that is was a great idea and that he’d have to check with the band…but he felt pretty confident that they’d all jump on board!  Within in days, he emailed me that they were ALL in!  He gave me his booking manager’s (Joe G) email and I shot him off an email.   What transpired next was nothing short of ‘meant to be.’

Joe G called me within an hour of my email and was completely pumped – but also quite curious about something.  His first question was,”Did you do a walk last year at MIT?” and my response was, “Yes, I did.  I ran it!”  and he replied, “I did an interview with 2 women on my radio station to help promote the walk” and then I said, ‘WOW, that was ME…such a small world!”

To me, it was no coincidence that I met the ATC folks because of Liz Longley…and there was no coincidence that ATC’s booking manager and I had crossed paths and that he already knew about Mitochondrial Disease – it was all meant to be!

From there, a wonderful relationship between UMDF (meaning Chelsea and I) blossomed with ATC, Joe G, and Liz Longley.   By far, Joe G has been instrumental in helping us organize and reach out beyond our Mito community and has been a wealth of ideas and source of information – he’s our ‘go to’ guy!

We’ve accumulated more than $2,500 in raffle items – and are busy getting all the final details in place.  Before we know it, the event will be upon us!

Our original goal was to reach at least 150 people for this event – but it would be AMAZING if we had more than that decide to come out and “Show Their Hope!”

Want to support the event but don’t live nearby or can’t attend that night?  NO PROBLEM!  We’ve set up a secure donation page just for you!

Want to purchase tickets in advance?  Well, you can head on over to our ticket page and purchase tickets.

If you want to help out, please don’t hesitate to reach out to us and let us know!

This night is going to be one you won’t forget – Liz Longley, ATC and I will all be taking the stage and showing our hope…while everyone in the auditorium will be showing theirs!  We just are so excited and we hope that you’ll help us spread the word!

We have SO MUCH more going on…..and I will be keeping you up to date.  Just to perk your ears…..if you’re local, keep October 15th open – we’ll be hosting our 4th Annual Promise of Hope Wine Tasting Event at the Lowell Inn & Conference Center (and it will be a spooky murder mystery evening that will be fun for all!).

Okay…that’s it for me for now – just wanted to get my first post out there!

Love and Light,
Stefani