Recurrent Respiratory Papillomatosis Foundation…Social Media Roll-Out

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@RRPFORG, #RRPFORG, #RRP

https://www.facebook.com/RRPFORG/?view_public_for=129609430915128

It’s official.  The RRPF is rolling out on social media.  There has been a support group page on Facebook for a good while now, but an official social media presence was not widely available.  We now have a one stop page where you can donate to the RRPF, setup a fundraiser that is shareable on all of your social media platforms, and access the latest information from RRPF and a quick link to the RRPF website.  Unlike the support pages that are closed groups, the RRPF Facebook Organization Page is shareable!  That means we are counting on you to share it with your social media.  Awareness begins on the ground floor, and we, the members of the community are the ground floor!

In the coming days, look for a roll-out of “Get To Know ___” series.  We will highlight RRP community members, board members, active researchers, etc…

Another plus of the RRPF Organization Page is that we have privacy set so that those acting as administrators do have to approve posts before they go up.  Since it is a public page, we wanted to be certain we kept any potential issues off the page!

So, as you sit sipping your coffee today, won’t you join us and help broaden our following?  Share the @RRPFORG page, follow @RRPFORG on Twitter, follow @RRPFORG on Instagram….

Consider starting a fundraiser. RRPF is a research focused organization and the funds received are going directly back to the RRP community in research support.  There are no paid members within the RRPF, it’s 100% volunteer supported.

Another exciting development that is in the early stages of rolling out is a pulmonary exclusive arm of the RRPF.  A group charged with one purpose-pulmonary RRP.  We all are well aware of the  mortality associated with pulmonary RRP, and many believe the ultimate cure for RRP will come from pulmonary research!  This team will function under the RRPF.

It’s an exciting time for the RRPF and we are excited that you, the community, friends, family, now have a shareable platform to bring awareness, gather information, and help with the fundraising goals of the organization!

While We Breathe, We Hope!!!

Masks

This has been a season of sitting….and as I take two stops forward, three steps back on most days, the word “mask” keeps coming to my mind….

Webster’s Dictionary has this as a definition of “mask”: something that serves to conceal or disguise.

My time in the trial taught me lessons that I still don’t know how to put into words, but more importantly, my complete and utter disappointment in my outcome…well…it revealed my “mask.”  In some ways, the “mask” was already showing several cracks and thin spots, but it wasn’t until I was faced with something I could not process, that I was forced to take it off just to breathe.

Today’s ramblings, are about my mask…what it was hiding (some of which I haven’t even realized yet) and about the masks we all wear…for different reasons….bear with me, as I am confident we will go to Lucy’s house and back a few times….taking various detours.  Those “squirrel” moments.

I’ve been trying to remember when the mask went on…..did it go on for my disease, did it go on for things I experienced growing up, did it go on as a young Christian, did it go on as an older Christian…..were/are there multiple masks that I’ve used over the years?  Why does one feel it necessary to wear a mask?  Is authenticity something we all “say” we want one another to do, but in reality we don’t?  Are masks to protect ourselves, those around us, or to hide those human insecurities and imperfections that we worry will cause those around us to leave or think differently of us?  Maybe, they are all of the above.

The earliest I can remember possibly using a mask, had to be as a teenager.  I was awkward, acutely aware of what I perceived to be a status of “less than,” craving to belong, wanting to be normal, like my sister(s).  Like most teens, I learned to pretend…a lot.  That age where I would guess, most “first masks” are used. I became who I thought others wanted me to be…in the process losing who i was and missing out on the journey I was meant to be on….I used that mask to take a “forced road.” Like most actors, over time, the longer you play the part, the harder it is to remove the mask.  So, at some point, that mask was stuck on-stupid decisions allowed to be made by that mask I let control me.

I see my next mask mirrored in so many social media posts on Facebook.  The mask of the “perfect mom.”  Can we just get a national amendment passed to simply say, “Moms, your job is tough.  Some days, it will stink worse than a dead skunk.  Some days, you will want to run, as fast as a sprinter. to get away from all of it.  There will be nights you watch the clock tick minutes away…as you await bedtime.  There will be days  you wonder how much therapy your child will need as an adult due to the damage, you are certain, you are inflicting on them as you count your failures for the day.  But, Mom, take off the mask…be real.  There are no perfect birthday parties, no perfect methods, no perfect Sunday mornings as you shout for anyone to just be dressed..just one of you…and there are no trophies at the end of the day for the “Miss Mom Who Faked It The Best Today.”  The only trophy you will ever get is that kiss on the cheek…or that “I Love You” when you least expect it from the child you were certain was demon possessed just an hour ago.”

Can I get an “Amen” on that amendment.  I scroll down my feed and I see the masks.  I can even look back at my own during that season.  I was scared.  I was uncertain.  I was winging it most days.  I failed more times than I can count….and I’m certain God shook His head at me most days in that, “Hmm….maybe Kim wasn’t the best idea for this experiment.”  The mask hid all of that from the outside world….as far as anyone wanted to know….I was a pro.  (My kiddos will tell you loudly…I was not.)  One big hot mess.  Somehow, well, I know how…simply by God’s grace did I not drop one, oh wait…I did that…oops…sorry Meg….ok…somehow, by God’s grace that I did not forget to pick one up after school…oops, I did that too…sorry Josh…naps.  See…my mask to appear all together was hiding nothing more than a mom dancing on hot coals just trying to get to the other side most days.  Getting kiddos from birth to high school graduation….it’s hard.  I wish someone had pulled me aside during that season and ripped my mask off….but I think we were probably all wearing a mask of some sort….had social media been a thing back then..would Moms today have a record to look back on that was real, or would they see the same masks they try to wear today?  That mask that made you believe that if your kiddo wasn’t the smartest, or the nicest, or in a certain class…you were a failure-oh my goodness if they happen to bite a kiddo at school…..how could you be such a terrible parent? Satan loves to dance on Mom’s…..loves to make that mask feel like a weight on our shoulders.  I was a willing participant…I let him hold it on….and I type today wondering how many around me were doing the same thing.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.  2 Corinthians 12:9-10

Then came the mask of “College Mom.”  Who knew that such a thing even existed?  Let me say this, and hear me loudly…..letting your kiddos go off to college, even if just down the road, is the hardest thing for a Mom to do that relates to the raising of her kiddo.  You pray that seeds are planted…but at the end of the day, it’s mask on time…because you must appear to have it together in this season.  With announcement, you tell the world that your kiddo is off to college…social media is a thing now.  There is no “empty nester” support group….and there’s no time to even appear less than stoic.  Your mask must present the impression that you have prepared your child for this moment in time….they will be successful…they will make perfect choices…and you will wear their success like a well earned medal.  I’m here to tell you..this mask lies.  Kiddos aren’t perfect.  Sometimes, plans made by them and the family don’t go as expected.  This mask tells you that you failed.  You somehow did something wrong along the way that gave way to outcome A or B or C.  This is the mask that I have wanted to burn a thousand times over.  What good are any of the struggles as a Mom through this season, if we hide them from the other Moms who could so desperately use simply that sign of, “me too.”  The job of Mom doesn’t end the day they leave for college, and our mask shouldn’t be one that presents this perfect facade to the outside world.  Our pain in this season of the empty bedroom…it should be shared. When something goes not as planned, we shouldn’t have these masks on that prevent others Mom’s from realizing, “me too.”  Yet…we do..we wear those masks…and I wore mine proudly.  Like every mask before it, it was the lies Satan had me believing about myself…and about where I was in life.

As I journey, seeing that all along, there were two masks carried that never went away, never got put away.  The mask of my illness and what I showed to the world….and the mask of my faith and what that was to me-not the one I knew needed to be presented. As I open this jar, one common theme is in every single mask-the lies that Satan told me….the lies that I let myself believe as truth.  I wanted to get that out there before I talked about the two heaviest masks of all….

The mask I wore from age five….still wear in many ways today…the mask of an illness..the mask of a voice I didn’t ask for, surgeries that I have grown so weary from…the mask of regret and anger towards that illness…the mask of grief that this illness brings on so many days….the mask that wants to have me sit and doubt that I am prepared for this….that somehow, in a way that I will likely never understand…this illness will be used.  The mask that told me it wasn’t ok to be angry or question God about all of it.  That doing so, somehow made me not have faith. (Goodness, Christ called out to God on the cross!!!) That to just sit and let God know I was tired of all of it, was somehow a reflection on my Christianity.  Oh, this mask is heavy….and I like to think I’ve taken it off, but it’s still there….I’ve just decided to take some of its power away.  The mask of my illness has robbed me of plans that I had made for myself, but it hasn’t robbed me of who I am.  I’m taking that power away from my mask.  In some ways, this mask has become like Jim Carrey’s character in “The Mask.”   With the mask of my illness on, I can pretend the life behind it doesn’t exist.  I can be that person who seems to be handing it with grace.  The crushing defeat of this past month has made that pretending too great of a weight to carry…the mask of my illness has to become lighter if I am to move forward and not get stuck in my sitting. So, while I know the mask is still on, I am taking control of the power it has, but recognizing that times will come where I have to stop and sit in it. Those days, where in order to move forward, I will wear the mask…but now with a knowledge of what I’ve let it control…and my freedom in deciding if it gets that power on any given day, any given moment.

And that leads me to the mask that I am working to take off that reveals who I am as a Christian…what I believe….what I have found to be man-made….the mask that weighs so heavily somedays…that I wonder if I’ll ever have it fully removed.  I have exposed some of this mask prior to today via a few other blog posts….a mask that was/is so powerful, it shaped much of what I thought was true for so long…..truths I am working through at this season….breaking apart what is true, what isn’t true, what’s Biblical, what’s not.  Realizing how that mask, that mask that had me believing certain actions where required in order to be “a good Christian”…that I used that in decisions that caused hurt….to myself…to others around me.  And that, my friend, is authenticity.  I allowed my faith, the mask of it, to be so legalistic when it suited me…that it caused pain, hurt.  God ripped me from the pit of where this mask had taken me.  Today, I can say that mask is cracked…pieces of it missing….but the journey of trying to remove this mask has been hard.  It’s easier to just sit where you are, than to be plucked from the comfort of your little mask and forced to take a jackhammer to that mask to find what’s on the other side.

I don’t write this today for pity or any of those human desires….I write to share my masks…and where I am in the journey of the masks that I know about….so that maybe someone out there will maybe just be, “Me Too.”

There will be more on all of this….but just exposing this much has made my head feel lighter….bringing those masks out of the darkness into the light…..

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