Hope is a Journey….

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

Comments on: "I think I see gold" (8)

  1. Carol Miletti said:

    Stef,
    This is beautifully written. Everything you have said here, could have been written by me- except that I’m so much older than you are, and have lived a pretty full life.
    But, I so understand the feeling that we are here and living this life and doing what we do (even when we shouldn’t be, or are too tired to, etc) because this is what we are called to do.
    I have great respect for you, your talents and your love of life and family.
    I wish you the best life you can have, the most love you deserve, and the faith to carry you through it all.
    Sending you love from Minnesota
    Carol
    PS- Hi to Beast

  2. Michelle S. said:

    I hope some sunshine shines down on you tomorrow and that blood pressure quits going whacky!

  3. Tracey Gaitani said:

    Stefani, I have only spoken with you a couple of times , but I have to say that I think of you and your family often…. I am glad that you wrote this because it just shows every aspect of this mito stuff…. each moment is different and I must say that I admire your strength and the way that you have decided to live your life…. I will pray for you and your family…. the other day , I freaked out d/t my son having an autistic tantrum and I just said “Lord, I am ashamed of my flipping out in front of my 3yo but You HAVE to understand and know my heart… I am tired, scared , worried, etc. ; please know Lord that I didn’t mean to flip out like that… help me”…. Stefani, I think that “being raw and transparent” is what it is all about!!! God Bless you and I pray that you improve and get stronger soon!! tracey gaitani

  4. Frustrating when: You cannot BE the person you really ARE.

  5. Stef,

    I love you my friend and am thankful to have you in my life. I learn more and more about you each time our paths cross on this amazing journey. Not that I need to say it, but please know that you have a friend who cares for and loves you and your wonderful family and yes, you are Super Stef, even if you don’t feel it everyday. I look forward to seeing you guys soon and thank you for sharing a glimpse to your soul. Prayers every day for you guys and hugs.

    Kurt

  6. My dear sweet Stef~ reading this this morning on the day I will begin my tx for this rare disorder that has taken over my body~ I so feel WHERE you are! There is so much you (me) cant say and people understand! I know for me I run like I am a marathon runner and when I finally stop~ I am practically dead and everyone just stares at me like WHY did you do that… But there is really no other choice…. I think people who dont have chronic, well not only chronic but very serious possibly deadly illnesses cannot comprehend what it is like to go to bed at night, knowing full well, that could be their last day. I know NONE of us are promised a tomorrow, but KNOWING your bus is on its way makes a HUGE difference or to me it does. You dont take things lightly, a good bye from a friend, or someone being mean, it is all intenisifed so differently. I am praying for you, I know God doesnt give us more than we can handle, well at least that He can hold us thro! You are an amazin lady and I look to you for strength Stef. I love you and pray things will settle down. As my good friend always says to me, ‘this to shall pass, just hope I dont go with it.’ love you dearly….

  7. Stef,
    Hang in there sweetie! I can imagine how frustrating this all is for you… I don’t know anyone else (even perfectly healthy people) who is able to inspire others and accomplish as much as you are able to… you are perfect just the way you are and don’t let anyone tell you different (even your body).
    Just know that I am here for you, whenever you need me 🙂 Your friendship means so much to me and I am truly blessed just to know you and have you in my life…
    Love you!
    Michelle

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