Hope is a Journey….

Dear Stranger in the White Coat,

When our eyes first meet, you see my disheveled hair, my groggy eyes, my PJ pants that don’t match my shirt…right now, that outward appearance mirrors how I’m feeling on the inside.  I’m vulnerable, I’m tired (my 2 hours of sleep in the last 36 hours just isn’t cutting it), I’m frustrated, I’m weary…and I’m counting on you, a complete stranger, to understand, treat, and help my medically rare and complex child.  I’m entrusting the life of my child to someone that I have no background information on, that I have no history with, that I have no connection with….yes, I’m entrusting my world to YOU.

I promise I will do my best to be open, clear, direct, and patient with you.  I promise to work with you for the benefit of the person I love – regardless of personality, age, gender, or race.  I promise to be willing to gently educate and help you understand my rare and complex child.  I promise to always remember that we are all only human and no one could ever be expected to know it all.  I promise to respect your opinions and hear out every plan and idea you have…because I know you have earned that white coat through countless hours of schooling, testing, interning, and hands on experience.  I promise you all of these things because, at the end of the day, we both just want the child in the hospital bed to recover and return to life as it was before we landed here.

But make no mistake – that child is everything to me…and while I have promised you all of these things, I have promised my child even more.

I’ve promised my child that I will never give up,

that I will always stand up for what I believe in,

that I will never settle for anything less than what is best,

that I will always believe in him,

that I will never back down when I know something isn’t right,

and most importantly…I will always be a voice for my child – regardless of how challenging the battle becomes

Because – he is worth it.

She is worth it.

THEY are worth it.

Truthfully, I have a hard time relinquishing the control of my child(ren) – (that I usually have 24/7) over to anyone – let alone a complete stranger, regardless of their qualifications or title – it’s nothing personalit’s not you, it’s me.

So when we sit and talk about our plan of action, if I’m resistant – remember my promises – not just to you, but to my child that is sitting in the bed that is in between us.

I’m really not trying to be difficult; I’m walking this thin line of being forced to trust strangers, being open to new ideas, being an advocate for my child, and honoring my promise to fight for the things I know my child needs that I might feel are being overlooked.

I need you need to understand….this child between us, this child is our world……

I don’t know it all.  I didn’t go to medical school.  I’m not a doctor.  I’m no one other than a mom who has spent countless hours researching both of my children’s rare and complex medical conditions.  I’m the mom who has spent countless sleepless nights reading every reputable study, journal article, research paper ever written about these conditions. I’m the mom who has carefully vetted every doctor that has been chosen as members of our regular (and amazing) medical team, because we only want the best.  I’m the mom who has connected with countless parents, nurses, experts, and social workers – networking and learning every single thing I could to be the best advocate I can be for my children.  I’m the mom who has spent countless hours on the phone with insurance companies, doctor’s offices, durable medical equipment companies, pharmacists, and infusion companies discussing, planning, managing (and sometimes fighting for) the things my children need.  I’m the mom who has spent countless nights sitting next to my children as they sleep – watching them breathe, praying for guidance, hoping for answers.  I’m the mom who has cried countless tears because of all my children have had to endure – the unfairness of missed outings, parties, ‘normal milestones’, failed friendships, lonely hospital stays.  I’m the mom who has given countless hugs trying to comfort fears, settle anxiety, ease worry, calm anger, and pray for healing.  I’m the mom who spends countless hours trying to find a way to juggle appointments, educational battles, insurance/medical equipment/medication authorizations, medication schedules, infusion, school work, house work, financial challenges, and STILL try to ‘just be mom.’

So, while I don’t know it allI’m an expert in my children, our history, what’s worked, what hasn’t worked, what is necessary, what is not necessary, when to give in, and when to push back.  Honestly, I’ve been fighting for so long, that I want nothing more than to NOT have to fight…to be able to find common ground where we understand each other, where we trust each other, where we listen to each other.

Sometimes it’s SO HARD to not feel the things I feel when you’re not listening.  YOU get to walk out of this room and move on to your next patient…and maybe you never have to see us again…maybe you don’t have to see us for another 24 hours – – – – But *I* have to deal with the consequences of you not listening for every second, every minute, every hour.…until either you come back OR the next team appears 24 hours from now (probably to make a totally new and different plan) OR I make enough noise that I get you (or someone else) back in here and we go another round so I can fight for what I think my child needs.

YOU get to leave and not think about the child in this room ever again if you don’t want to.

This child, in this bed, in this room….I think about every second of every day.

Please understand, your decisions (or lack-thereof) have consequences and impacts far beyond what you will ever see or fathom.                                                                                                                                                                                                                                                                                                    

Remember this when you are making those decisions.

If we met under different circumstances, my hair would be neatly done, my clothes would match, I’d have a smile on my face, and I would be ‘greeting the dawn with a breath of fire.‘  You wouldn’t see me as ‘the overbearing mom‘ or ‘the difficult mom‘ or ‘the hypervigilant mom‘ – you’d see me as ‘the person who would give you the shirt off their back if you needed it‘ or ‘the person who willing to spend every free moment she has helping others’ or ‘that person who is making some pretty awesome memories with her family and friends’ or ‘that gal who loves to sing and write music to help others.‘  Just like I probably wouldn’t see you as, ‘The stranger who is not listening to me and is making things harder for my child‘ or ‘the stranger who just doesn’t get it and is endangering the health of my child unintentionally‘ or “the stranger who has a God Complex’ – I’d see you as ‘the person who has sacrificed so much so that they could help so many’ or ‘that person who has a heart bigger than the state of Texas’ or ‘that person who likes all the same things as I do.

So, I promise to take a step back – especially during those difficult conversations, and meet you where you are.  I promise to work with you – but I need you to work with me.
If we could promise each other to remember that, at the end of the day, we hold a common vested interest – that beautiful, sweet, amazing warrior sleeping peaceful between us – that should be enough to help us find a way to meet in the middle.

Yes, Stranger in the White Coat, you hold an immense power – I respect that….but never forget that power isn’t the only thing that heals or helps…sometimes it’s the gentleness, willingness to listen (and be wrong), humility, and compassion underneath that white coat that makes you ‘The Great Practitioner.’

Respectfully,

One Tired, Weary, Dedicated Mama (and One Exhausted, Supportive, Amazing Dad)

My Dearest Great Pretenders

My Dearest Great Pretenders…

I see you….

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Every day you get out of bed, take a deep breath, and face the chaos of the day ahead.

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You get your crew moving, you start up feeds, administer medications, dress and ready them for the world…

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You make phone call after phone call, organize supplies, fight with insurance companies, travel to and from appointment after appointment, chase after results and people who don’t do their jobs…

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You make sure school work is completed, you write emails and notes to teachers explaining challenges, you go to meetings at schools where the staff usually have no idea the types of battles you face.

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You fight just as hard to get a proper education for the ones you love as you fight to get the medical care your loved one needs.

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You are the master juggler of all things – finances, medical, educational, parental, spousal.  Perfection isn’t ‘expected’ – it is necessary.  You are the real-life Jenga Master.

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You go all day before you realize you haven’t had anything to eat or drink because you’ve been so focused on the tasks at hand…so you take whatever you can grab on your way out the door and you eat on the run….always.

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The world sees you, with your brave face smiling…sometimes a bit disheveled and a bit frazzled – but the world has no idea that you’ve just carried the weight of the world on your shoulders all day long…because you’re a great pretender, just like me.

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You are the one who holds it all together, so you feel like no one can see you fall apart.

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You are the one who helps everyone…so you can’t be the one needing help.

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You are the one who rushes in and saves the day, so no one is allowed to come and save you.

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You are the one who stands staunchly in the face of danger, so no one can see you flinch.

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You are the one who does it all, so no one can do anything for you.

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You are the one who always finds the silver lining, so you’re not allowed to sit in the shadows.

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You are the one who fixes everything, so you are not allowed to need fixing.

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You are David, and you’re not allowed to fear Goliath.

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But I’m here to tell you, I see you.

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I see you falling apart, needing help, needing saving, flinching, needing a hug in the shadows, needing fixing, secretly fearing Goliath.

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I see you, and I’m with you.

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I am a ‘Great Pretender’ too.

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I know how heavy the weight of the world feels.  I know what it’s like to wake up every day feeling overwhelmed by just the thought of having to emerge from the cocoon of covers and face the new day ahead.

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I know what it feels like to literally have ‘nothing left’ and know I have to give my ‘nothing left’ and more – because it’s necessary.

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I know what it’s like to be so busy fighting for the things that are SO important (like supplies, prior auths, test results, schedules, meetings, deliveries, medication adjustments) and realize that I haven’t eaten or had anything to drink all day (and the sun is just about to go down).

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I know that bone tired, soul weary feeling that consumes you and beats you down as you frantically fight back with every last ounce of grit you have…and then get up and doing it again – over and over – without giving up.

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I know that ‘brave face’ you put on for the world – not to ‘fool’ everyone one – but to convince yourself that you can do this…that you can keep fighting, that you can keep up, that you won’t quit.

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But you don’t need that ‘brave face’ to convince yourself that you can do this, that you can keep fighting, that you can keep up, and that you won’t quit…

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You need to stop pretending and let the world see your tears, your frustrations, your vulnerable heartache, your bone tired, soul weary moments…because, it’s in THOSE moments that the world SEES your strength, your courage, your grit, your grace, your tenacity – AND – it’s in THOSE moments that the world will carry you and remind you of how amazing, how strong, how beautiful, how courageous, how resourceful, how fierce you truly are.

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It’s in THOSE moments, when the pretending stops – that restoration, healing, and transformation not only CHANGE us, but CHANGE others.

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You see, when we become willing to stop pretending – the world sees us differently…

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…And we see the world differently.

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We become stronger by showing weakness.

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We become wiser by revealing the things we question.

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We become more courageous by talking about the things we fear.

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We become DAVID when we call out our Goliath.

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So, my dear friends – let’s decide to STOP PRETENDING.

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It’s okay to be afraid, it’s okay to be weary, it’s okay to be angry, it’s okay to have doubt, it’s okay to need a break, it’s okay to need support, it’s okay to crave normalcy.  It’s okay…it’s really okay to just BE who you are, feel what you feel, need what you need, and hurt when you hurt.

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There is a beautiful blessing that awaits you if you come out from behind that veil of silent suffering and free the things within you that you’ve caged for so long.

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Don’t worry…you won’t be alone – I’ll meet you there.

Meet you there

Love and Light,

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Stefani

 

 

Anchor

Over the past 3 1/2 years, I’ve struggled in a “Season of Silence.”   I’m not going to lie to you and say that I’ve thoroughly enjoyed it, because – well, I haven’t.  I’ve built walls around my heart hoping to prevent even the slightest penetration that could result in more heartache.  In doing so, I’ve isolated myself not only from the pain, but also from the joy.


I went from writing music on a regular, almost daily basis – to only writing 3 songs in 3 1/2 years (2 of them were in the past month and a half).  I went from passionately advocating for others to struggling to be my own voice for myself.  I went from being deeply enmeshed in my community (on and offline) to being an outsider.  I went from my clear path to feeling like a lost wanderer.

Folks, I was drowning.

I was drifting away from my ship,

and I couldn’t see the shore – all I saw was this angry, relentless sea of nonstop moments that pummeled me without mercy.

…And then I noticed it.  There was a life preserver the appeared in between the swells.

It was then that I had to make a choice – to swim to it with every last ounce of strength that I had left OR I could stay where I was and wait for someone to come and rescue me.

I decided that I had waited long enough…and I began to swim.

It was scary.  Every wave that crashed on me felt like it was pulling me under, and I feared I wouldn’t be able to resurface.  Every breath I took was a mixture of water and air…

But I got there….And when I took hold of the life preserver…

I noticed that it wasn’t floating aimlessly…It was tied to the ship that I fell from….

And that ship was anchored strategically in place…

Waiting for me to return.

So here’s what I want to say to everyone out there who feels they are lost their own ocean of moments that just keep crashing down on you…

The ship is still out there….

There’s a life preserver waiting for you deep within those waves.  And it’s tied to your ship…you can’t see that yet, but it is….

And your ship, it’s ANCHORED and it’s WAITING for you.

So don’t just tread water waiting for rescue, swim fiercely KNOWING that your life preserver is out there, and it will be your rescue.

Anchor

Out on a limb
Trusting in you
Full of the promise
Faithful and true

My Hope & My Strength
My Rock & My Shield
Heading for war
On life’s battlefield

But oh, my soul…
I get weary, you know
And I want to let go…

But don’t let me drift
Away with the waves
Come be my anchor
Help me to stay
Strong with your purpose
Clothed in your light
Armed with compassion
To do what is right

To mourn with the hurting
Through the darkest of nights
To walk with the broken
When there’s no end in sight
To give so completely
That none can deny
Your Love is my anchor
And it’s changed my life

No I won’t be shaken
I will not fear
I’ll stand in the knowledge
That you’re always here
With you I’ll move mountains
With you I am free
You’re my faith, my foundation
The compass in me
But, oh my soul
It is well, don’t you know?
It is well with my soul
Just don’t let me drift
Away with the waves
Come be my anchor
Help me to stay
Strong with your purpose
Clothed in your light
Armed with compassion
To do what is right

To mourn with the hurting
Through the darkest of nights
To walk with the broken
When there’s no end in sight
To give so completely
That none can deny
Your Love is my anchor
And it’s changed my life

To give so completely
That none can deny
Your Love is my anchor
And it’s changed my life

©HRM17 9/3/17

Love and Light,

Stefani

Wow! It’s been a year and 5 months since I last posted.  I’ve thought about this blog countless times – wanting to share what’s been on my heart.  I’d like to say that ‘being busy’ was my reason for not posting, but…if I’m really being honest – I haven’t posted much because it’s been a really rough few years.  It’s been rough enough that I just crawled into my shell (I call this action, “Turtling”) and stayed there for the longest time.

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I was paralyzed in disbelief of the never ending swells of hardship that we have struggled to stay above water through.  Truthfully, I’ve been functioning (quite convincingly) in ‘Survival Mode‘ for longer than I care to admit.

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You see, ‘Survival Mode‘ isn’t as ‘safe’ as we all think it is.  I mean, don’t get me wrong – in acute situations – YES – it is a safe mode to be in (sometimes it is the only mode you can be in)…but to stay in ‘Survival Mode‘ for any length of time – well, it starts to eat you alive.

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It’s like a disease within your core and it slowly eats away at everything that you are, all of your dreams, all of your hopes, and…eventually, if you don’t stop it – the ONLY thing you’ll be doing in this mode is ‘exist’ – quite literally, you will merely ‘survive’ in this mode – there will be no LIVING.

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It’s a slow change…little by little you let go of the things that kept you grounded.  If I’m really being honest, for me, it was even easier to do this because of our move south.  It was easy to just let go of the things that made me SO driven – like volunteering, advocating, and connecting with others.  Moving south meant I didn’t have the connections, contacts, and the accountability that I had up in MA…and, if I’m being honest with you, I convinced myself that I was ‘just taking a break‘ from it all so that I could regroup and settle in to a new area.  That’s how it all began, and slowly – everything that ‘I loved to do’ became something that I ‘used to do.’

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If I’m really being honest with you….the only thing I did was disconnect, detach, and make excuses while the fire inside me was slowly being deprived of the oxygen it needed to keep me going.

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I had plenty of reasons for ‘shutting down’ – like serious health issues with both kids, adapting to ‘new medical norms,’ accepting progression of disease, financial struggles, educational ridiculousness…I mean, the list goes on and on – and – If I’m really being honest with you…we all have our ‘list of reasons’ as to why we’re ‘too busy’ or why we ‘don’t have time’ or ‘our plate is too full’ to do the things that we love, that we’re passionate about – that the world NEEDS us to do.

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You see, if I’m really being honest with you – I’ve been ‘stuck’ in this pattern for so long that I didn’t even know how to get out of it.  There was a feeling of restlessness inside my soul, but I was so STUCK that I couldn’t see the forest for the trees.

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It was like I had chained myself to ‘survival’

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that I was too afraid to just take the key that I had in my hand (the entire time) and free myself from the prison of my own creation.

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Now don’t get me wrong – I wasn’t completely void of living, I definitely spent some quality time with my family, made some great memories, led worship at my local church for a year, volunteered on a crisis team (also at this church) for a year, and even spoke a few times at events – but I was called to do more – and I robbed myself of so many opportunities to do so.  I regret not taking them, but the only thing I can do now is LEARN from those missed opportunities and make better choices in the future.

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So, because I’m really being honest with you – I’m going to tell you that I know I’m not alone in my experience…

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I know this because I’ve talked with people about it, I’ve seen friends living in ‘Survival Mode‘ and I see their chains – they look a lot like mine.

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I am here to tell you that you can have every reason in the world for shutting down, shutting the world out, holding back, and going into ‘Survival Mode‘ – but…
it. will. not. help. you.  

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It will not stop the chaos, it will not stop the fear, it will not stop the hurt, it will not stop the uncertainty, it will not stop anything BUT YOU.

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Yes, it will STOP YOU from healing, growing, changing, learning, and giving.  Often times, our deepest growth is born through our worst and most difficult times.  If we run from it, if we try and hide from it, if we think we can escape it – all we’re doing is fooling ourselves and denying ourselves the opportunity to grow – despite the immense pain or the obnoxious discomfort that we feel.

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There’s always a choice…you can OPT OUT of long term ‘Survival Mode‘ and choose to LIVEbut it will still cost you – it won’t be easy…there may be a lot of tears, a lot of heartbreak, and a lot of pain – – – but you WILL find your way through it.  I can’t tell you how long it will take, but I promise you, you WILL get there.

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And, when I say, “there” – I mean, you will get to a point where LIVING is again beautiful, rewarding, joyful, and brings you peace and happiness.

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For those of you struggling or unable to get out of ‘Survival Mode” – I get it – and there’s no judgment here….all I’m doing is asking you to do is keep fighting to release yourself from the chains of ‘Survival Mode‘ and step out into LIFE again.  It’s going to be hard, uncomfortable, painful, and maybe you’ll hate it for a while…but I want you to know that I’m here with you on this journeyyou are not alone.

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I’m still making my way back from stagnant survival and I’ve been clumsily making my way through the healing process…it hasn’t been easy, and a lot of it has definitely NOT been fun – but I’m working on LIVING OUT LOUD and I am finding my way back to the things that filled me with passion and peace.

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For me, my faith has been my anchor.

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It has been a refuge that has held me steadfast – even when I wanted to let go and drift away in the sea of unrest.

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And, if I’m REALLY being honest with you…I’m pretty sure that I haven’t seen the last of  ‘Survival Mode‘ – but I am determined to never let it take root in my life ever again.

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It’s good to be back…

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Love and Light,

Stefani

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I Am Here With You

When the road gets hard, the path’s not clear, and all your fears come true…
all I need to know is…..

I am here with you

When the night is long, the pain sets in, and there’s nothing we can do…
all I need to know is…

I am here with you

When the dawn brings tears, instead of light, and shakes us through and through…
all you need to say is…

“I am here with you”

When you feel there’s nothing left to say and there’s nothing left to do…
all I need to know is…

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I am here with you

Because, in the end what matters most, is not what you say…but do….

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There’s comfort in the knowledge, that I am here with you.

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Love and Light,

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Stefani

Hello Again….

Well hey there strangers!

It’s been a while since my last blog post….and for that, I apologize.

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If I had 2 sentences to sum up where I’ve been, here they are:
Life has been interesting these past 11 months.

It’s been a wild, crazy, fun, heartbreaking, and tough go….but I’m back – and MAN there’s SO much on the horizon that I can’t wait to share with you.

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Stay tuned….More to come!

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Love and Light,
Stefani

2014 in review

So 2014 was a very quiet year blogging wise….I hope to post more in 2015.  There’s must to share!

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 11,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

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