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.’


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

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