Show Your Hope!

The crisp air of the morning kisses my face…..today is a new day….a day to be cherished. Today, like all days, I find more and more to be thankful for.

It doesn’t matter the things that we face – as long as we face them together….it doesn’t matter how tough times get – as long as they we hold on to each other through the tough times….it doesn’t matter how uncertain the path ahead is – as long as we walk it with the ones we love, nothing else matters.

I won’t lie to you and say that these past few years have been easy or fun – they have not.

I won’t lie to you and tell you that I don’t long for my children to not have to face weekly infusions, treatments, or life threatening diseases….because I DO long for them to live life without pain….what parent doesn’t want that for their child? BUT, what I CAN tell you is that I have learned SO much through our journey over the years – about myself, about my family – our rock through the tough times, about the resilience of my 2 amazing children who never cease to shine despite the road they face….about my incredible friends who are our strength and our shoulder through the sadness and uncertainty…..I have learned to see the absolute blessings that have been bestowed upon us despite our struggles. And, had we not encountered such struggles – I believe we may not be able to see the blessings and the priceless treasures we have in life.

I have learned to be thankful for every moment no matter how good or bad…to be thankful for the unexpected because it teaches us so much about ourselves and each other….to be thankful for the simple things in life because those are the things that truly matter most….to be thankful for the good times because they enrich our spirits and give us joy….to be thankful for the hard times because they help us to grow and strengthen our spirit….to be thankful for the uncertain times because they teach us how to be patient and how to lean on each other….to be thankful for the victories because we see that all the fighting and struggle has meaning…..to be thankful for the tears and the sadness because we learn to have Hope and Faith….to be thankful for the peace because we find comfort and perspective in that peace….to be thankful for even the scariest of times because we learn to have Courage in the face of the unknown…..to be thankful for every second because it’s precious in its own light….to be thankful for every heartbeat because there is no greater gift….to be thankful for the beauty within the thorns – because without pain there could be no growth…to be thankful for the joy of life regardless of the hand you are dealt……to KNOW in your heart that, with God, you are stronger than anything that can happen to you and to take refuge in the knowledge that, no matter what happens…as long as you have each other to hold on to through the storms that life can throw your way – there is no greater blessing than that.

The depth of our gratitude to those of you who have stood with us and held on to us through the storms cannot be articulated properly, there just are no words…..your support and your strength during those times were (*and continue to be) the most precious gift ever….

Love and Light,

Stefani

The first glimmer of morning kisses my cheek through the window near my bed.  I greet the dawn with a breath of fire; a new day reveals itself with promise and purpose.  I wrestle off the covers and coax my body to an upright position.  Every muscle screams and threatens mutiny as I evict my body from my bed and stumble towards the door.  The air feels heavy, the room slowly begins to fade to black, my heart races and my limbs feel like lead as I fall into the corner of the wall – bracing myself until the world feels right again.  As I make my way to the bathroom in a single rider tilt-a-whirl, I am mentally preparing myself for my next challenge….the shower.  Over the years, I’ve perfected the art of ‘Speed Shower’ in order to minimize the risk of passing out (which I used to do on a regular basis).  As the steam rises from the belly of the tub, I take a deep breath and step in.  Within 2 minutes of the water meeting with my skin, I can feel my body revolting furiously.  My heart beats like a Happy Hardcore techno song, my arms and legs get weak, my chest feels like it might explode.  I quickly grab the handheld nozzle and slide down the wall, finding myself on the floor of the bathtub.  I finish my shower in a seated position and then muster up what strength I have left to get out, dry off, and get dressed.

Exhausted from my first battle of the day, I make my way down the hall and take on the next challenge….the stairs.  17 unforgiving beasts of their own…and each one eager to take me down.  With every step, my legs shake and threaten to retaliate as I hold on to the railing as my lifeline.  “You’ve got this!” I tell myself halfway through….hoping my words carry me better than my legs.

Victoriously down on the first floor, the rest of the day awaits with the same daunting presence as it does every day….but nevertheless, I embrace the challenge with a fierce spirit and a determined heart.  This. Disease. Will. Not. Take. My. Joy.

Sadly, the thing that threatens to steal my joy the most is not my disease, it’s the perception of others that my disease LIMITS me, PREVENTS ME, or DISQUALIFIES me from offering something valuable, meaningful, or important to this world.

Being so honest and open about my journey with my disease process is something I feel is important – not just for myself to do, but for others to do as well.  When we hide our brokenness, our scars, our wounds, our challenges, our shortcomings…it, in essence, creates a cloud of shame to envelop these parts of our lives.  By hiding and being secretive about the things that impact us so greatly on a day to day basis, we are creating a negative power for it to soak in.  There is no shame in adversity, there is no shame in your struggle.  We ALL have our own battles, hurts, and issues that we face and by sharing these things with others, we remove the negative power and we EMpower ourselves to not focus on the bad but to be able to see the GOOD that comes from it.  We highlight how we RISE above those challenges, we REMOVE the veil of ‘perfection’ that so many try to hide behind, and we REVEAL how beautifully broken we are by baring our souls to the world.

BUT…there is a price for this – and I believe this price is the reason why so many of my amazing warriors out there fear to be real with each other.

I can’t tell you how many times I’ve been told that my help wasn’t asked for because I had too much on my plate.  Friends have told me that they didn’t share their own struggles because they felt their issue was ‘mundane’ compared to what I deal with and they didn’t want to stress me out.  My peers have refused my help in professional settings because they felt I had ‘too much going on’ and they felt it was best to just let me focus on that rather than allow me to do what I feel called to do and what I am good at doing.

All of these statements were completely well meaning.  All of these statements were said with love.  Sadly, all of these statements were made because of an assumption that my life is too broken – my world is too broken, for me to contribute in a meaningful way – without risking completely breaking me even more.

I get it.  People truly have the best intentions when they say these things (most of the time!), but these statements remove the most important factor from the equation – ME!

Imagine being skilled in something, having the ability to do that (and do it well), and feeling called to do it…only to be told that someone else decided they knew what was best for you, without even discussing it with you.

What isn’t considered is that my life is mine – it is beautifully broken and I am fiercely fighting to not just EXIST within it but to THRIVE despite the challenges I face, and when people make assumptions without trying to fully understand, it hurts – for sure.  It’s HARD to NOT be angry when people judge you or make decisions for you when they haven’t fought what you’ve fought or overcome what you’ve overcome – but let me encourage you to dig down deep, beyond that hurt and anger and get to a place of love, because it’s only when you get to LOVE that you can truly show them where your strength is through that brokenness that they are blinded by.

Never has it hurt more than when I wanted to throw my whole heart into serving others and being rejected because there was ‘too much going on.’  I think that what we fail to realize (as human beings) is that we look at the world through our own personal lens – and everything we see is interpreted by our own experiences.  When someone sees my life they see tremendous hardship, nonstop chaos, and a lot of heartbreaking stuff.  When *I* look at my life, I see tremendous challenges, peace within the chaos, and a lot of beauty within the heartbreak.  They see so much going on that they can’t imagine that *one more thing* would make it any better or wiser for me to take on.  *I* see so little reason to not take what is in my heart of hearts and give the world everything I have.  They see a woman who asks for prayers and support as a sign of weakness – that she is falling apart.  *I* see a woman who knows the power of prayer and the power of community – reaching out to tap into that…and I see that as a sign of strength and courage. They see my life as a melancholy tragedy and *I* see my life as a beautiful testimony of God’s Grace and Provision despite our adversity.

We’re looking at the same exact things, but our experiences shape our view of them.

I want to encourage you all to try to remember to change your view of the things you look at before you make assumptions or draw conclusions, especially about a person OR about what a person can/cannot do.  In fact, you might be closing the door on a very powerful and positive result if you aren’t careful and open about the people who surround you in your world.  You might miss out, you might be the stumbling block for someone, you might completely shut someone down who was finally brave enough to open up.

And for my amazing and wonderful warriors out there – DO NOT let the naysayers stop you.  DO NOT let the ‘judgers’ deter you.  DO NOT let the ignorant ones cause you to retract and withdraw.  You MUST push forward.  YOU MUST NOT GIVE UP.  You MUST persist.  You have SO MUCH to offer this world.  There is SO MUCH that this world needs to learn from you.  Let them see your love through the disappointment, let them see your strength through your vulnerability, let them stand in the light of your courage when facing fierce opponents and overwhelming odds, let them watch you shine through the darkest hours, let them get a taste of what GRIT looks like as you face the onslaught of battle after battle without reprieve.  My friends, the world NEEDS to see YOU – the good, the bad, the beautiful, the ugly.  We’re all perfectly imperfect – and it is only when we are brave enough to show our beautifully broken hearts to this world…when we are bare to the core – that we can change hearts and live with joy….and THAT may friends is something I refuse to surrender…my JOY is my STRENGTH.

I am beautiful, broken, and bare.   I am not ashamed of my journey, my scars, or my suffering.  I will not apologize for being the woman that God has called me to be, nor will I hide that under a rock – my light will shine, and anyone who tries to prevent me from doing that will not succeed.

I will persevere and I hope you will do the same.  Let it be your power, not your shame!

BARE

It’s days like these that I long for peace
All I need is to find relief
I’ve given up trying to explain
We’ve lost so much with so little gain
Nights like these they can paralyze
Fear grows strong if you give it time
I can’t control what has brought us here
But one day maybe you will see things clear

I am not afraid to show my cards
Shred this skin and drop my guard
There’s nothing left, there’s nothing more
My naked heart down to the core
The walls will fall, the scars will show
In the breaking down and letting go
I’ve lived this pain, I’ve had my share
I’m beautiful, broken, and bare

Waiting for the other shoe to fall
Counting on another promised call
Don’t blindly look through the truth to see
You’re terrified of all the proof in me
Don’t need a fix, I don’t need repair
I know life is hard and it’s never fair
I’m raw and real, I’m not mended yet
What you see, it is what you get

I am not afraid to show my cards
Shred this skin and drop my guard
There’s nothing left, there’s nothing more
My naked heart down to the core
The walls will fall, the scars will show
In the breaking down and letting go
I’ve lived this pain, I’ve had my share
I’m beautiful, broken, and bare

And the weight of all this history’s
A war that I must wage
Even though I know it’s hard to see,
One day I’ll turn this page

I am not afraid to show my cards
Shred this skin and drop my guard
There’s nothing left, there’s nothing more
My naked heart down to the core
The walls will fall, the scars will show
In the breaking down and letting go
I’ve lived this pain, I’ve had my share
I’m beautiful, broken…

Oh I’m beautiful, and broken…and bare.

©2013 Hope Rising

Love and Light,

Stefani

^{Matthew 5:14-16
14} “You are the light of the world. A town built on a hill cannot be hidden. ¹⁵ Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. ¹⁶ In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.

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 personal…it’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 all – I’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)