2020

I’ve truly never understood the phrase love/hate-relationship more than after experiencing this year, 2020. In the worst ways my faith was tested. Everything I knew had changed drastically at what felt like all the same time. In the beginning of this year I was hopeless. I’d lost myself completely. I lost my young cousin to suicide. I left the longest consistent relationship I had ever been in and it was no wonder my physical health was struggling because my mental health was at an all time low and I’m not even sure to this day how I let it get so deep. Deep enough to change my world, but I see now that might not have necessarily been the worst thing to happen. I was crying everyday and I’d let myself go in every possible way. Understandably no one wanted to be around me. I didn’t even want to be around myself. I felt dark. I felt ugly. I felt like a fire truck came and hosed down all the light I had inside until I was dark and had nothing to offer anyone. January/February I was still working but didn’t feel purposeful anymore which I’ve learned is a very important piece of the puzzle. In order to be of service to others in any way shape or form you have to realize your worth and purpose. I’d lost mine and so going to work even though I was surrounded by lovely new people everyday still felt worthless. I didn’t feel like I was helping anyone because my spirit was so low.

In comes March and coronavirus hits and just when I think things can’t possibly get worse I’m now quarantined, no work to distract my mind, living in this new unknown fear of a deadly pandemic and I can’t leave the house. From March to at least May.. maybe June, I literally did not leave the house. I’m getting packages I bought delivered to the house, wiping them down with bleach wipes and letting them sit 24 hours before opening. I’m truly starting to think, being so severely “immunocompromised,” is life ever going to be the same for me? Because if not, I really don’t know how much longer I can live like this. I’m doing treatments for cancer, and in just this short time since the new year started I’ve been diagnosed with new obstacles that are keeping me from any sort of positivity. I’m in pain. Bone necrosis (the death of bone) is spreading fast and we’re talking about knee and hip replacements at 29. I’m only in the house but can’t get around without a walker or crutches. I’m weak. I’m sad. I’m tired and not just sleepy tired, I mean my soul is tired. I’m coming off a fresh unwanted heartbreak, family tragedy, health in despair and now what feels like a permanent quarantine due to a deadly pandemic.

It would’ve been so easy to give up. And then I remember.. one day after receiving two brand new lungs. Two respiratory therapists come into my room literally 24 hours after having my thoracic cavity broken open and sewn back together and they tell me, “Alright, it’s time to walk.” Walk? Like get up and use my legs? I laughed. I’m in my twenties and I need a good 2 days rest after a hangover. There is no way after 24 hours of a double lung transplant am I even entertaining the thought of sitting up in this bed let alone getting out of it. Those RT’s, they don’t take no for an answer. I’m forever thankful for that. I remembered that just a few weeks prior to this, professionals expected me dead. My doctors at the University of Penn and my second opinion team at John’s Hopkins estimated very little time left for me to live… and there I was, after a successful transplant from a selfless organ donor, with the OPPORTUNITY to walk. They helped me up out of bed… 7 chest tubes hanging out from inside me. I’m hooked up to IVs and breathing machines and oxygen and I place my hands on this metal assist that looks like a walker with two respiratory therapists on each side of me and I place one foot in front of the other leaning all this sore painful weight on the walker, and bam, I am walking the hall of the ICU 24 hrs after life saving surgery. And that memory jolts something inside me.

The first few weeks of quarantine were unexplainable. Uncertain. Unknown. How long is this going to last? I miss my friends. My family. I have so much I want to keep my mind distracted from but how is that possible stuck inside these same four walls with so little to do? With no where to go? I wake up, shower, eat, nap, repeat. I know this isn’t healthy but I’m tired. I’m lazy to the idea of anything that could pull me up from this rut because honestly, I’m starting to get comfortable here. I’m getting high everyday…(prescribed, but still a bad habit), to escape reality but when it wears off I just need double the dose or accept the sober reality that I’m wasting a lot of time here. I worked so hard for these days. If that girl who took her first walk saw her future self in this rut, she truly just wouldn’t allow it. And so, I didn’t.

It took months. Back and forth with healing and growing. Good days. Dreadful days. Still shooting unanswered texts to my ex for I don’t even know what reason honestly. I guess the comfort of some kind of past connection that would just pull me backwards.. Lots of bumps. Lots of tests, but this time I decided I was going to break this pattern by changing my response… by staying consistent.

My first step was downloading this app called The Fabulous. It allows you to set the most simple reminders to yourself each day and rewards you with a little star and the feeling of accomplishment for doing these simple things… things I’d stopped doing and lost interest for during the beginning of the year. Yes, embarrassingly, things like making sure to drink water, brush your teeth, take a shower, eat a meal. I started adding more things to my daily list until I had a solid morning, afternoon and nighttime ROUTINE. I looked forward to that feeling of accomplishment and even though some days were nearly impossible, I stuck with it.

Then, I realized I needed to do something, anything to make me feel a sense of purpose. For over ten years I’ve been a volunteer at Camilla Hall Nursing Home where I receive my deepest rewards of purpose and meaning, but they’re not accepting volunteers during the virus. I’m not working so I can’t interact with others and this soul of mine that feeds off of spreading love and light has never felt so isolated. I get an idea. I go to Amazon and buy a “make your own card kit.” I can’t be the only one craving human interaction right now and the act of GIVING always fills my cup far more than receiving. Couple days later my card kit is in the mail and I’ve got my hot glue gun out. I spend my days intricately creating these beautiful homemade “thinking of you” cards with ribbons and rhinestones and lettering and lace. I’m sending them to everyone I miss. Tons of friends, family, people I think might be struggling. This leads me to an ever bigger idea. I talk to my dear friend and woman who took over my Volunteer Coordinator position at the hospice. She has Mothers on hospice and Veterans and Fathers who all would benefit from cards for Mother’s Day, Memorial Day, Father’s Day, etc. she drops off some supplies and now I’m creating and writing letters to hospice patients.. my true passion.

Each of these things light a fire in me and give me the strength to continue healing, continue growing.

One of the biggest changes I credit my present well-being to, I see one of my friends post about a Meditiation group she’s part of. I’ve been doing work to help others and as much as I receive from that, I’ve never done work solely on myself. I used to think that was selfish until I realized I can’t TRULY help anyone or offer any of my gifts if I don’t work on myself too.

I sign up. Everything changed.

I spent over an hour a day and still do practicing mindful, guided Meditiation. My guides have a specific method and the first level is letting go of our lived life. This doesn’t mean erasing memories. This means taking the “images” of our lives experiences up until present and letting go of all the illusion and emotional attachments to those images. It’s not easy. Sometimes they melt away easily and sometimes you have to force these images out to make room for peace and clarity. When I started my Meditiation practice, I visioned this humongous mountain of memories and pain and relationships and people and mistakes I’ve made and regrets I’ve held and all of these emotions and I visioned them as a big big mountain. I used to get mad during meditation. Frustrated. Because no matter how long I focused or tried some things just would not budge. My mentor said, what if we try just moving some rocks every day? It will take its time, but just a rock a day will undoubtedly make that mountain smaller. And so each and everyday, whether it be a massive chunk or a little pebble, I’m showing up. I’m being present at the foot of my mountain and guess what? It’s not so big anymore.

I took it further. I stuck with Meditiation and started my journey from just being religious and faithful to being spiritual. I started slow with crystal work and journaling… getting outside and feeling the energy of Mother Nature and the magic of our earth. I kept up with daily Meditiation and retreats with like-minded spirits. Soul searching. Writing. Reading. Healing. Self love. Self care. Digging deeper. Meeting regularly with nutritionists and changing my diet not for weight purposes but for better nutrition. The pandemic lightened up for a bit and I allowed myself the feeling of safely connecting with people places and things so much more presently than ever before. I found importance and purpose in the power of the present and realized how much time and energy I’d been spending before during the present, consumed with patterns of the past and worries of the future.

I started a more wholistic approach to health and wellness and although I know the importance and power of today’s medicine, there’s nothing quite like a soulful breathwork session. During nausea spells and hospital stays I was prescribed powerful drugs with side effects like compazine and zofran and then quickly experimented and figured out for myself that peppermint & ginger essential oils gave me the same relief. I started an all natural cbd regimen and my knee replacement has been postponed for SIX months because the pain has decreased so significantly. I’m officially off opioids. I sleep better. I’m refreshed. I’m healthy.

It’s now the end of November and although this has been the most painful year of my life, I’ve also never learned so much about life or myself. I even, bravely, allowed myself a mountain getaway, plant medicine journey, that I may or may not write about one day, but I came home with an entirely new view on this beautiful life and also gained an extremely secure and proud sense of self. My soul feels warm and inviting. Bright. Soft. Yellow. Welcoming. Friendly. Like home.

I don’t feel so dark anymore. I worked hard for that.

I use the term “fell into” loosely because I’m a firm believer now more than ever that the universe controls it all, but I’ve even “fell into” an entirely new career which I’ve seemed to manifest simply through doing something that comes natural and easy to me. I was trying to obtain something I could do from both home and in the hospital and no sooner, after offering to run a friends business Instagram, requests started flooding in with local businesses asking me to run their social media platforms as well. To date, I have my hands full with six businesses.

This month I had a routine transplant follow up — my mind and spirit have been healing so beautifully that there was no doubt in my mind that my body wouldn’t follow along. I wound up having the best number lung functions I’ve had in years. Years. This only contributes to my new thinking that the body, mind and soul are so extremely connected.

This year isn’t over and if I’m lucky, I’ll face more hurdles that prepare me for a higher self and strength. I’m writing this because at one point in the beginning of this year, I almost gave up. It seems the lower I allowed myself to get, the higher I set myself up to be. I want anyone who had the patience to read this whole thing to know your fire doesn’t burn out until YOU say so. I wanted so badly to allow that fire inside me to burn out but it just wouldn’t, and I didn’t have it in me to put it out myself knowing that healing IS, WAS and ALWAYS WILL BE possible if you put the work in.

I no longer put energy toward the people, places and things that don’t serve me. I don’t see it as selfish anymore, but instead, necessary. I give of myself in every way I can because that’s what fills my cup, but I remember at the same time that giving TO myself is just as important. I wish this for you and anyone struggling this year, or ever.

My door is always open.

Keep that fire burning and spread your light EVERYWHERE.

Behind the Curtain:

Hey friends,

I’ve been working on this blog for a few days now but just haven’t quite been able to find the right words or where to start. It’s unlike me to have a case of writers block, but that seems to be the case with this particular blog and I think I know why. Lately, I’ve been doing a really good job at making things seem close to perfect. I’ve been posting a lot, keeping myself busy with my Senegence business, getting outside in the fresh air and truly having some real control over my anxiety, which is something I haven’t been able to say for quite some time. I just recently started working with some new brands and companies that have been paying me to promote new and exciting products on Instagram, and all around just keeping myself busy and distracted from a darker reality. I guess in all honestly, these Instagram and Facebook highlights have been an escape for me. I think the reason I’ve been having a more difficult time with this blog in particular is because I wanted to believe things were nearly as perfect as they seem, instead of admitting that’s not the total truth. Don’t get me wrong, these recent daily activities like Makeup Monday LIVES and product reviews have been a ton of fun for me, sharing blogs and my progress with clarity and well-being with friends and family has been 100% honest, but I haven’t been telling the whole story… the story of what’s behind the curtain of pretty posts and smiles. So, it’s been a little harder to admit to you all, and myself, that things haven’t been as simple as they may seem. I mentioned in a live video that I did the other day that I always strive to be REAL and honest with my friends, family and followers, so that’s what I intend to do through this blog post. If I only fed you the highlights and the positives, I wouldn’t be telling the whole story. So, I want to share 100% of what’s going on — not just the highlights.

So here it is. If you’ve kept up with my past blogs, follow me on any platform or know me personally, you know that I’ve been given a second chance at life. After being told years ago that I had a very limited time left to live, I underwent a double lung transplant after a lifetime of suffering with Cystic Fibrosis. Along with that life saving surgery comes a lot of post transplant issues. One of them being the prolonged use of medicines that keep my lungs healthy, but have nasty side effects for the rest of my body. To date, because of one certain anti-rejection medicine, I’ve had over 75 skin-cancer surgeries. It’s something I go in for about every 6-8 weeks. We do anywhere from 3-7 positive cancerous spots each time, starting with biopsies and ending with scrapes, digging and stitches. These appointments usually last anywhere from 7am-4/5pm, depending on how many spots we remove that day.

My latest battle has been one of the toughest though, and it’s because of a few reasons. One being it’s terribly painful. Two being that’s it’s discouraging in the sense that there is no cure.

I’ve been recently diagnosed with a condition called bone necrosis, which translates into the death of bone. Its a common result of being on a medicine called prednisone, a steroid which I’ve been on daily for over ten years. This medicine causes weakness in the bones until eventually necrosis sets in, which there is no stopping. This necrosis is spreading all throughout my body, but specifically in my joints is where it’s most painful.

In the beginning of this year, I started complaining of severe bone pain in my right knee. I hadnt fallen or hit it in any way that I could remember so I went a little while without addressing it, thinking it would heal on its own, but it only started to get worse. Eventually, when I could barely walk, I saw a Penn orthopedic doctor who took an MRI. The results came back that my knee bone has essentially died. This doctor felt as though a knee replacement was my only option.

Just as I did with my transplant back in 2014, I just felt more comfortable before taking action by getting a second opinion, but soon after seeing the first doctor, the coronavirus hit and I was quarantined. It was actually a small relief, because as a result of having to stay inside, I was out of work and for the most part off of my knee. I was getting through the days with pain management and a knee brace which worked for a bit of time, until it didn’t.

A few days ago, the pain and the condition of my knee became unbearable and so I was seen by a new Penn orthopedic doctor for a second opinion. The news was better than I expected it to be, which I’m grateful for, but still not ideal. This doctor said that he believes there’s something we can do to buy me a few years before the knee needs to be completely replaced. This doctor believes he can do an arthroscopic surgery, drill some holes in the knee, create better blood flow and in-turn promote new bone growth. He said the success rate is about 75% and that he’s confident I’ll immediately be in less pain. So, that’s where we’re at right now. Unfortunately though, this is only my first of many experiences I’ll have trying to control the pain and condition of necrosis. As it spreads through my body, the doctor could already see the bone in my left knee beginning to die too. Luckily I have no pain there yet, so we’ll cross that bridge when the time comes.

I’ve been given a surgery date for this June, and until then I’m required to use crutches for the simplest of distances —- as short as traveling from the living room to the kitchen. I’m sharing all of this because I want all to know that as good as things seem to be, nothing is as perfect as it appears. I strive really hard to be real, authentic and genuine, and because of that I want to share not only all of my highs, but my lows too.

Right now, I’m doing a pretty good job at staying positive. I’ve had a controlled handle on my anxiety and panic and although this has been a difficult reality for me to face, I’m reminded by friends and family of how far I’ve come and how far I’m strong enough to continue to go. I’ve come a long way since the beginning of this year, when I was at an all time low and dealing with an extraordinary amount of change and life lessons. In all honesty, this news has been discouraging and I’d be lying if I said it hasn’t brought me a few steps backward, but I’m actively working toward remembering there are some things I just don’t have control over. Those things however, I believe God has control of, and my faith in Him has yet to fail me.

I’m going to continue to do the things lately that have been bringing me joy, because those are the things I can control. Spending time with my family, connecting daily with close friends, promoting new products from brands that have allowed me to work from home, keeping up with my Senegence makeup and skincare line. I’ve even fallen in love with learning embroidery and have been spending every chance I can get outside in the fresh air and sunshine, gaining clarity and well-being. A sweet friend of mine has even reached out and helped me to join a new mediation program which I know will help me gain strength through practicing patience and mindfulness.

All I ask right now is that if only for a moment, you could send some prayer, positivity and encouraging energy my way. I don’t usually like to ask others for prayers for myself, but I’ve felt the power of true prayer and positively before, and I truly believe it works more powerfully than any medicine known to man.

As I go through this most recent journey, I feel proud of how far I’ve come, and the strength I know I have inside to overcome this too. I’m so beyond words grateful for the love and support I’ve already been shown through sharing all of what’s been going on, and I’ll continue to keep sharing not only the highlights of life, but the raw realness that I deal with too.

So as always, from the bottom of my heart, thank you for reading what I have to share. I’ll be keeping you all updated with my progress through this journey and all that’s to come. The support and love I’ve been shown just this far has reminded me that my blessings far outweigh the trails I’ve gone through.

I’m forever grateful and will only continue to keep fighting for this incredibly beautiful life.

Love and Light, Sam 💟

Life expectancy

I haven’t been myself lately. I want to share a little about what’s going on, because when I say I haven’t been myself, I mean I really have not been myself, though, you’d never be able to tell by Facebook highlights and instagram filters.

The reason I’m sharing my latest struggle is solely to let others in similar situations know that they’re not alone. This blog is truthful and raw and I’m going to share some really personal thoughts and feelings because through reading and speaking of others peoples struggles, I’ve gained strength. Everyone, even the strongest, fall sometimes. Right now, I’ve fallen and I’m working on getting myself back up. It doesn’t happen overnight.

In 25 days I celebrate a milestone: 5 years post double lung transplant. That’s five years I’ve spent trying to learn the ins and outs of this new body, made with recycled parts.

When I had Cystic Fibrosis severely, I knew myself completely. I knew how to manage my health. I knew how to suppress my cough. I knew when I needed IVs or a hospital stay. I knew myself like no-one else because I’d been living with CF everyday for 23 years. Now that I live with someone else’s lungs inside of me, its hard to learn what new signs and symptoms mean. If I cough now, instant panic attack. These lungs are new, why am I coughing? Is something wrong with the lungs? Do I need IV antibiotics? Was I around someone who was sick? Should I be reporting this to my team just in case? Its not easy not knowing your own self. Thats part of what I’m dealing with right now.

When I say its nearly five years since I’ve been given a second chance at life, it sounds inspiring. It feels inspiring, actually. I feel proud. I’ve fought my ass off to make it here, but there’s a dark cloud that hangs over this celebration of life and its called life expectancy. The life expectancy for Cystic Fibrosis is a miraculous 40 years of age now, which I never thought I’d see in my lifetime. I traded that in though, because I wasn’t on the positive side of that statistic. I had a few weeks left to live when I needed my transplant, so afterwards my life expectancy has changed to the expected average of 5 years.

I know this doesn’t mean in 25 days I’m going to expire like a gallon of milk, but it did discourage me from wanting to celebrate the fact I’ve made it five years out. Imagine trying to live a normal life, fantasizing about your future: a career, a family, a partner, meanwhile, having in the back of your head, ‘Am I going to be alive for that?’ It’s scary. It messes with your mind in so many ways. Do I continue to live normally like I don’t know about the average life span after receiving lungs? Is that even possible?

This feeling is one of the reasons I’m struggling. I’ve been making bad decisions… really bad decisions. Bad behaviors. Anxiety at an all time high. Upset, disappointed and embarrassed with myself, all because for the first time… I’m afraid to die.

When I was sick… and actually dying, I wasn’t afraid. Not at all. I used to tell myself, “It’s a win-win. I cannot lose in this situation.” I would say, I’m either going to get lungs and live my life with the people I love, or I’m going to die and be with Him and all those who have passed before me. I’ll be in the kingdom of heaven and so, I wasn’t afraid. Things are different now. I am so absolutely in love with my life that the thought of leaving anytime soon scares me. I’ve done so much living but still have so much living left to do. I’m sure without a doubt in my heart that I’ve made my donor proud. I know this because I’ve made myself proud. I’ve used so much love and compassion and strength and joy and magic and power since I’ve began this new life, but I have so much more left inside to give. If you’d read any of my previous blogs you know: I’m not leaving this world until every ounce of love, passion and strength inside my soul is completely given away… and then, when I’m completely empty of all God has given me here on this earth, only then will I be ready.

I talked this over with a really good friend who shares the same lung center as me and he reminded me there are lung transplant patients out there that are 10 & 20 years post transplant. Then I talked to another friend who had a lung transplant just like me and who had made some bad decisions herself – acting out of fear. But she taught me some really valuable lessons. She said the hard time I’ve been having doesn’t define me, and that these bumps along the road are just part of our story. She told me to never let myself stay down once I’ve fallen, because that’s not who I am, and she’s right. Its not who I am. I’ve never been one to live in fear or let this disease win its battles. So I decided I’m going to celebrate my five year milestone and add it to the list of odds I’ve beaten. I’m going to continue living in adventure and excitement because that’s who I am. And when it does come my time, Im going to peace out gracefully, having lived a life full of love, passion & power — every ounce that God has given me. Five years may be the average but I’ve never been average before and I decided I’m not going to start now.

This time, I’m going to ask my readers a question and I really want honest replies. What would you be feeling or doing if you were approaching your fifth year of new life, with a 5 year life expectancy hanging above your head? Would you continue to build your future plans? Would you choose to ignore it? Would you pretend it doesn’t exist and just live each day like it was your last? Comment on this blog, comment on facebook or private message me with your answer — questions and comments are always welcome, too.

As always,

A Sincere Thank You For Reading,

Love and Light,

Sam

A Letter to my Donor

A letter to my Organ Donor:

It’s no secret that I’m living with someone else lungs inside of me. What is a secret is who’s lungs they are. The Gift Of Life has a very strict policy on finding out who donated their organs to the recipient. You, the recipient, have to write a letter to the gift of life. The Gift of Life then delivers your letter to the donor’s family and after reading, they then decide whether or not they’d like to be in contact with you. I understand how drastically different we see this situation. I received life. Because of this selfless soul I was able to continue living. To the family, their loved one is gone. There is no coming back. So, to give them their space I waited a year to contact them the first time. I wrote a letter with the utmost gratitude for the life I’m now able to live because of thier loved ones selflessness. I wonder if my donor, my hero, ever thought in their wildest dreams that they would one day save the life of a 23 year old girl dying, fighting like hell every single day to make it to the next. 
I wondered if the lack of response I received was because I didn’t write a strong enough letter. I thought maybe I should have dug deeper, maybe I should have been more raw with emotion to make them realize just how unexplainably grateful I am to be alive because of their loved one. I wrote again two years later thinking maybe the first letter just came too soon. That wasn’t the case either. Still, no response. It turns out though, that what I thought was a weak letter wasn’t weak at all. As a matter of fact, the Gift Of Life reached out to me asking for the rights to my letter. They said it was so well and strongly written that they’d like to use it as an example for recipients to use when writing to their donors family. I was so honored, but still a little discouraged that my letter didn’t receive a response. So now, I’ve decided to say some things that I’ve wanted to say to him/her for a while.
Before my surgery, I lived everyday fighting with everything in me to make it to the next. I’ll never forget this one day when my health was really coming to the end, my mom and dad knew they had only a short time with me left, so they would make efforts to go on nice car rides or take me to the beach for the day when I could. I was frail and weak at 85 pounds so days like that were rare, but when they came along we took full advantage. One sunny day, us three went to the beach together. I remember not even 5 minutes by the ocean and I started to cough up massive amounts of blood like I so often did. I couldn’t make it through the walk in the sand to get back to the car and I couldn’t stop coughing up this blood that made me feel like I was drowning. My dad, being the rock he is to me, carried me through the sand back to the car. Luckily, with todays technology, we had a portable nebulizer machine in the car and I was able to get a nebulizer treatment and calm down, but I learned something that day. There actually is something worse than suffering so massively yourself, and thats watching your loved ones, who would do anything to take this pain away from you, suffer from being helpless. It’s a feeling that makes you sick to your stomach.
My very first words after surgery were, “this is it, this is what it feels like to breathe,” by breathe, I meant breathe easily. Despite the pain of being cracked open, having your lungs cut out and replaced and then sewn back together like a toy doll with less stuffing, I was still able to finally feel what it was like to breathe easily. I knew then I was starting a brand new life. A brand new life to say the least. 
My dearest donor, my hero, I am alive because of you. But, I’m not just alive. Im thriving. Because of you I now live a life of adventure, compassion, excitment, love, light. I FEED MY SOUL AND FOLLOW WHAT SETS IT A BLAZE. I’ve made new friends along the way that support me more than some people I’ve known my whole life. Donor, would you believe the girl that couldn’t walk of the beach that day, who lived on a feeding tube at 85 pounds and oxygen to survive has ridden in a hot air balloon since your selfless gift? Would you believe I’ve been to Disney and walked the parks with no wheel chair, unhooked of any IVs. I’ve been to the Florida Keys to celebrate the anniversary of US, and this beautiful life I’m now able to live. I’ve swam with dolphins in Atlantis Bahamas. I followed my passion for hospice care and became a volunteer. My compassion was recognized and I was offered the head position of the entire volunteer department. A dream job I couldn’t have ever imagined being able to commit to before your gift of life to me. 
Donor, I rode an elephant. And I did so laughing until my stomach hurt the whole time. I completed a 5K, let me repeat that one, I COMPLETED A 5K. I went from the girl who couldn’t make it up the stairs to my bedroom, to the girl who fell in love with hiking and zip lining. I’ve done yoga with baby goats. I’ve strengthened my relationship with the Lord because of your gift. Because of my gratitude and my endless faith. I let excitement decide I was going to do my first water slide ever in Atlantis. I’ll never do it again lol! It scared the begeezees out of me but I DID IT! I’ve done more living in the almost 5 years since you’ve saved my life than I ever had in the 23 years pre-transplant. Most important, I’ve allowed myself to accept being loved. Never once in my life did I imagine being able to think of a future with someone I love. I always thought it selfish of me to put it bluntly — to have someone fall in love with me and then…die. Leave them lonely. And that was inevitable before. Now, I live in hope. I live in Love and other than receiving those lungs, this love was the greatest decision of my life. 
There are no words in the human language to describe my forever gratitude to you for your selflessness. I continue to live with nothing but excitment, adventure, love, light, passion, compassion, feeding my soul and heightening my spirit. 
Of course, like everyone else after transplant I have many trials that I have to get through, but nothing compares to the life I once lived. I’m alive. I’m brand new. In a sense, my life has just started and I cant wait to see what the future holds. Just being able to say that gives me chills of love and appreciation. A future. Something people think about everyday that I avoided thinking of at all costs. 
My donor, my dear friend, as badly as I wish I knew something…anything about you, my faith keeps me hopeful in the fact that we will meet one day. I’ll see you at heavens gates when I’ve used every ounce of passion for this life and I HAVE NOTHING LEFT. Thats when I’ll be ready to go — thats when we will meet, easily breathing, pain free and with open arms. 
Until then, I hope to continue to make you proud here on this earth. 
Always fighting for the next day,
Always living in love and light, 
Thanks for reading, 
Sam 

Q&A

Hey there, Readers,

No long introduction here for this blog post… short and sweet — I’m a sucker for these question & answer surveys. I have been since Myspace days. Also, I’ve been meaning to create a blog post that was a little more lighthearted than my typical writing. Although, even though these questions are more lighthearted, they’re still pretty personal. Feel free to copy any/all questions and use them for yourself. It’s fun getting to know yourself through personality questions. It’s even more fun to share them with others who want to get to know you better too – win/win.

Enjoy!

(If you’ve read my previous blogs, you know I over talk, so I apologize in advance if you were expecting short answers)

1. What does your dream life look like? My dream life? I’m living my dream life and thats the truth. Not to be boastful, but what more could I ask for? I’ve been given two brand new lungs to keep me alive, a strong faith that gets me through every trial I’ve faced, a warm home, a loving family, a brother who isn’t just a sibling but a friend, generous and loving grandparents, a mom and dad who I’ve never once had to question their love and loyalty, a partner to share this life, good and bad with, friends, a purpose. It might sound corny but I literally could not dream up a better life. If we’re talking about the future, I do dream of having my own family someday. I have so much love in this little body… I want to give it all away… every ounce. (I wouldn’t mind a blue frenchie either as an addition to that future family)

2. What do you know to be true today that you didn’t know a couple years ago? I’ve recently realized something that I think I have actually known but never acknowledged. I know to be true that I, and anyone for that matter, if you believe with your whole heart and soul, can manifest things to actually happen in our lives. There’s a line in one of my favorite Disney movies, Halloweentown, where the Grandmom witch tells her magic grandkids that magic is simple, “all you have to do is want something and then let yourself have it.” Thats stuck with me literally since 98’ when I watched the movie for the first time.  

3. In this very moment, name 3 things you’re most grateful for: First and most importantly, my health. You don’t realize how much of a blessing good health is until you don’t have it. Not suffering through each day to get to the next has been the biggest blessing in my life. Feeling strong because you can breathe is a feeling unexplainable to anyone who hasn’t lived fighting to stay alive. Second, obviously, my family. Not just blood. Those who treat me like family and the ones I could call at two in the morning if I needed somewhere to go… like my family the Grays and Lonergans. Third, I’m thankful that I was raised with a foundation of faith. I’m grateful that I was brought up introduced to,  but not forced,  to know and love the lord. It was my choice to grow my faith as I got older but I never would have made it a priority had my parents not sacrificed to build my foundation.

4. When/Where do you feel most in tune with yourself? Two places make me really at one with myself: first, alone in the chapel at Camilla Hall Nursing home. There’s some places where you close your eyes and your surroundings are so powerful that for a moment you forget where you are. I get so lost in wholehearted prayer here that it’s almost an out of body experience. The second place is alone on long car drives, windows down and wind on my face, singing something that gives me the feels… like every single Carrie Underwood CD ever released. I don’t think I’ve ever felt so in tune with myself more than on a solo drive.

5. What does happiness mean to you? Happiness. Plain and simple – when the fire in your soul is blazing and you know in your heart that even if it’s not right now, everything is going to be ok.

6. If life stopped today, what would you regret not doing? I love this question. If life stopped today I would be so absolutely positively satisfied with what I’ve accomplished here on this earth. I don’t regret doing, or not doing a single thing.

7. What are you most afraid of? As simple of a question as this sounds, its actually one of the deepest for me. My answer isn’t spiders or the dark. My biggest fear is being forgotten.

8. What quality do you admire most in others? There is one quality that I respect and admire amongst all others and its sincerity. I believe I’m a pretty good judge of character and I see right through fakeness and wrong intentions. I surround myself with sincere,  genuine people who are real and kind.

9. Top three movies: Everyone makes fun of me for this first one but I don’t care, my favorite movie is “Signs.” Yes, the one about the aliens, but aliens aren’t why its my favorite.  Its a movie I could watch a thousand times because the theme is about those of us who chose to see coincidence and those who chose to see signs. I’m a sign person. Second movie, Beauty and the Beast. It’ll never ever get old to me. And third is one you probably never heard of but its one of my all-time favorites and you should see it… Win a Date with Tad Hamilton.

10. What excited you the most?  Adventure. I want to look back on this life and know that I’ve seen things, done things, learned new things, met new people in new places. I love nothing more than when my heart is racing from excitement. Riding on the back of a motorcycle on a beautiful sunny day, a hot air balloon ride, zip lining, jet skiing, visiting new cities and trying new foods. What is life without adventure?

11. Pretend money is no object, what would you do? So, my problem is that I already pretend money is no object and that gets me in trouble. But if were talking like an unlimited amount, I’d start my own nursing home for no cost to the patients and we’d have activities all day like bingo and ballroom dancing and pet therapy everyday.

12. What advice would you give to your 16 year old self….. how about your 21 year old self? Oh Lord, if only we could actually do this! I’d tell my 16 year old self to stop being in such a rush to grow up. Slow down and enjoy the ride. When I was 16, I was a completely different person. Thats because I grew up through my teens thinking I wasn’t going to make it to my 20s, so I tried so hard to cram every life experience in during those years and a lot of times it got me in trouble. My 21 year old self, same thing just about…. except I’d probably add a “stop dancing on the bar and call it a night,” somewhere in there.

13. How do you relax? Naps. Everyday. Naps.

14. Imagine yourself back in the 90s… What memories do you have? My whole childhood was in the 90s but there are some things that stick out above others. First being my Uncle Tom. He used to live with us in our Upper Darby house when life was so good. He taught me the words to the very first song I ever memorized: This is how we do it by Montell Jordan lol. I used to sing every word and had no idea what it meant. Another memory was one of my favorites, after school at St. Cyrils every Tuesday my dad used to pick me and Tommy up and take us to Johny’s Drive In… I’d get a cheeseburger and dad would get hotdogs. It was the highlight of my whole week. Then there was the Fridays me and my best friends in 8th grade would clean the convent. I’ll never ever forget running shoeless in our stockings through those hallways doing anything but cleaning — unfortunately it ended around the time Alexis and Leah knocked over a burning candle on the alter in the chapel and we almost burnt down the convent. Ah, good times.

15. Whats your favorite way to spend a Sunday? Lazy Sundays are happy Sundays. Recently, I like to lounge around with Steve now that we live together… make breakfast and drink our coffee in the morning… nap, and then go to his moms for Sunday night dinner. Its the little things in life that make it perfect.

16. Describe in detail your life 5 years from now: This one I’m choosing to skip. If I’m alive and well in 5 years thats plenty enough for me.

17. What sets your soul on fire? Excitement, adventure, love in all of its forms. I live my life in constant search of things that set my soul on fire, and when I find them, I don’t let go.

18. If you couldn’t fail, what would you do? Im not crazy about this question because winning wouldn’t be half as satisfying unless you know how it feels to fail. Since I’ve failed at this already, if I tried again and knew I couldn’t, I would become a published writer.

19.Your biggest day to day challenge? Had I been asked this question 4 years ago, boy would my answer. Be different. I would have said surviving to tomorrow was my biggest daily challenge. Not being able to breathe or thrive. Managing oxygen and a feeding tube, feeling weak. And hopeless. Today, I struggle with something that after realize what I used to deal with seems shallow. I struggle daily with self confidence and speaking up for myself — although, even though I struggle with it, I work on it just as equally.

20. Where do you find your purpose? My volunteer work. I have always said for the past ten years since I’ve started that I’ve found my calling with the elderly. Working in hospice care and volunteering at. Camilla for 10 years now has given me  the greatest sense of purpose. The feeling of knowing you’re making a difference, a real difference, in this world is one of the greatest feelings I’ve ever experienced.

21. If you won the lottery, would you keep working? Absolutely. I actually love working. I’d probably just. Volunteer but either way I would still stay active. Although I probably would end up having to keep working anyway considering the horrible way I spend money.

22. What’s your best friend like and where did you meet? I have two and they’re true earth angels to me. I couldn’t ever write an answer significant enough to explain them in a format like this.

23. Do you believe youre living a meaningful life? I wholeheartedly believe that every life, from Pope to a criminal, is meaningful. So yes, I live an extraordinarily meaningful life.

24. Name a few materialistic things you can’t live without: I could create an entire blog post out of this question alone, but here’s three things: 1, coffee – 2, self-tanner- 3, pictures

25. Whats something that offends you? Might sound silly but I have to admit, I’m completely turned off when men curse (not like hell or damn, but you know, like the big ones) in the presence of women. I think its rude and disrespectful. I also get pretty offended if someone is late for a meeting with me. I like my time respected.

26. What makes you feel most empowered? Honestly, another answer that might sound silly, but I feel most empowered when I take pride in my appearance. It empowers me to go to work everyday. When I put the time into my hair, makeup, and outfit, I feel unstoppable honestly. I FEEL CONFIDENT & that’s empowering.

27. Whats your ideal morning? I’ve lived it. Sweet and simplistic. A good cup of coffee outside on a porch, sun shining, gentle breeze blowing.

28. What is one of your long term goals? Long term goals? My health. Today and always I want to show my thanks to my lung donor by keeping myself healthy for as long as possible.

29. Name your greatest weaknesses: I wish the answer to this question was different but one of my biggest weaknesses is not speaking up for myself enough. I keep a lot in because there is almost nothing I hate more than controversy, but on the few times that I have spoken up for myself, its felt so empowering. I’m a work in progress.

30. What are you most proud of yourself for? Most proud? Where do I start? I imagine most of my readers would assume my answer to this would be my transplant journey, and of course, thats at the top of the list. My faith is another one. I’m proud that for the first time in my life I’ve allowed myself to accept love instead of turning it away because I was afraid of dying. But above all of these things… I’m just proud of who I am. I’ve fought my entire life to become who I am today and everything I mentioned, and all that I didn’t mention have contributed to that. IT’S NOT SELFISH TO BE PROUD OF WHO YOU ARE.  I’ve learned that and I hope if there’s anything you take away from this blog today, that you realize you have a lot to be proud of yourself too.

Love & light 💕

Sam

Sharing the Struggles

I want to get something straight during this post before I even begin writing about what I really intended on writing. Something that I struggle with often. Something that I’m fully confident others struggle with as well — it’s about sharing our lives on social media. I actually surprise myself. I used to spend the majority of my life doing everything in my power to hide my health and everything that it involved. Honest to goodness, some people would never believe how unbearably exhausting it is to try everything possible to appear what others consider ‘normal.’ Nowadays, I find myself sharing health updates, personal accomplishments and writing blogs letting the outside world in to the inner most feelings of my new life, learning how to cope and understand how to literally start over after everything I’ve ever known. And to be honest, I’m not sure which of the two are better. I have a hard time when writing deciding if I should just highlight and delete every word once the blog is done. Am I helping anything by sharing — am I hurting by sharing? Am I just filling this social-media-run-world with more personal information that truthfully nobody actually cares about?

But heres why I do it: Total and complete inspiration. I have this burning passion inside me to show others in the dark that there is light to be found. I post the majority of my life, my adventures, my family, friends, relationship, places I go, things I’m able to do now that I never would have imagined being able to do before — but never do I feel as though I should be sharing “the bad stuff ” — the issues that still linger in my life daily, in different ways shapes and forms then years ago, but still very much real and present. I really, really used to struggle with sharing my fears and health status back before these new lungs. I hid for so long — never letting anyone in. I’ve come a really long way — and now I sometimes find myself asking if maybe I’ve even come too far. I share the things that I share because I am so damn proud of how far I have fought to be able to live the life I’ve been living the past few years. I want to share every second! I want others that are struggling to see where I’ve been — so low, so hopeless and so incapable of any type of quality life, to a life of gratitude and endless possibilities! I feel like, as selfish as this may sound, I have something to offer those who witnesses my journey through the life I presently live. It’s not tangible — its not monetary or advice-filled or even that out of the ordinary (for most). What I provide by sharing my story is hope — so much endless hope and excitement and pure addiction, appreciation and ecstasy for the universe and all of its daily miracles big and small. Thats my reasoning behind the blogs, the photos, the sharing of my hospice work and the most genuine reward I feel from giving all of myself to this world. I want to share every ounce of all the good in my life in hopes that it relieves just one struggling soul to see light. Theres an endless need that burns inside me just roaring to show others that there is nothing so bad in this world that cant be overcome by the power you hold inside yourself. I can say in all honesty, I’ve never posted a moment or a memory or an adventure or an experience for any certain amount of “likes”. What I post and share is intended for so much more than that. I post positivity to be a beacon of light. I want so wholeheartedly, so sincerely with everything inside me to lead as an example for people to be changed by powerful of works of mercy and a grateful heart. There is goodness, there is love, there is endless hope no matter what circumstance. I strive with this new opportunity of life to be an example that shows life is worth living at all stages — at the most broken, the most unexplainable lessons, incurable illness and unimaginable loss. There is reason behind all things, even unbearable things we may never understand. I share my positive blogs and pictures and my life after transplant because I feel like I have been given a purpose to remind those struggling there is light through darkness, and no matter how bad or scary things become, I wont ever let fear keep me from the power of fulfilling this purpose.

Now, here’s where I fall short. Posting the struggles. This is something that I’m not comfortable with. With the help of a new transplant friend, Tiffany, I’m starting to realize the negativity I’ve associated all along with sharing more than just the “good things,” shouldn’t be frowned upon, but it’s still something that’s not easy to accept myself, let alone with others.

Chronic disease, organ transplantation, clinical appointments, life expectancies and learning to be in control of an entire new body isn’t at all just a physical adjustment. It’s mental and it’s been really hard for me to share the struggles I’ve dealt with after my new lungs because I haven’t wanted to seem ungrateful, weak, or still broken. I’m supposed to be fixed now, and I’ve never thought of sharing my struggles as something that could be beneficial to anyone — instead, I saw expressing the negative pieces as cries for help, weaknesses, and things that should be hushed because I should only be grateful for the life I’m able to live now. The truth is, life after transplant is full to the brim of hardships and struggles — it’s just different issues than I’ve dealt with before — more manageable issues but issues nonetheless. Putting it out in the open truthfully, I’ve had over 75 positive cancerous spots taken off of my body caused directly by my anti-rejection pills over the last four years — rejection meds that I can never discontinue if I want to stay alive. I’m in constant fear of organ rejection. Every sign and symptom of a cold gives me anxiety that all that I’ve worked for for so long could be taken away from one infection. I have MOHS surgeries every four weeks and just recently had a partial finger amputation for a cancer spot that spread down to the bone beneath my finger nail. I’ve had blood clots that spread to my lungs. I’ve formed uncontrolled diabetes to the point that when I came in to be admitted this time around, my body was so stressed, my sugar was over 1,000. That number is easily deadly. I’ve been avoiding a permanent diabetic pump even though I know its needed at this point. You might also be surprised to know that I’ve been on steroids for over a decade, which causes the most horrific, deep, uncontrolled bone pain to the point of screams. I don’t drink alcohol because of high kidney functions that require monthly hydration through a permanent port in my chest because standard IVS no longer go through my scarred veins. Those high kidney functions will eventually result in progressive kidney failure due to the pressure of the anti-rejection meds that keep me alive, but thats a worry for another day. I’ve even done courses of chemotherapy to try and lessen the progression of the cancer caused by the anti-rejection meds. I’ve fought, and continue to work through fertility issues— we’ve researched surrogates, I’ve dealt with positive family planning and discouraging experiences as well involving personal opinions of professionals who don’t believe its ethical I bring life into this world with a life- expectancy of my own lingering overhead. All of these things are just to name a few — and I would look at these things as issues people would never want to hear about. So, I’ve kept them all quiet. Until now.

The Real Post: The Latest Struggle

Mental Health. There aren’t any words to be able to explain a life where I’m able to wake up daily and breathe air into my lungs. Mornings I’ve never imagined waking up next to someone I cherish, who accepts me for all that I am, because of all that I’ve gone through. I still struggle daily with the acceptance of that concept — of any concept really that involves things considered as “normal life.” But here I am. I was called in to the hospital on a June night in 2014 and have never been the same. My old, deteriorated, sick lungs were removed and replaced with the gift of new life from an organ donor who remains anonyomous. Since then, I’ve accomplished things that were only far fetched fantasy to me at one point. I’ve traveled. I’ve celebrated transplant anniversaries in The Florida Keys, Disney, Orlando, I’ve swam with dolphins, I’ve zip-lined, I’ve found a purpose in work I’m passionate about and pour my heart and soul into hospice work as much as I possibly can because I know the fears that end of life can bring. I’ve made new, lifelong friends. Spent valuable time with family. I’ve found love. Actually, I cant take credit for that. God placed love, acceptance, support, excitement, a best friend and a loyal partner in my life who walks beside me through the bad things I don’t want to share.

I’ve tried alligator! We have a trip set for Atlantis Bahamas coming up and another Florida Keys planned for my anniversary of 5 years strong since my life was saved. I’ve literally had to ADD things to my bucket list because there was a point I was crossing things off too rapidly. I’ve filled my life with volunteer work, celebrating 10 whole years as a volunteer at Camilla Hall, where my heart is at home. I’ve continued to build upon a relationship of infinite trust with the Lord that could never be broken. I have no plans on stopping. I have no plans on slowing down. Which is why right now is the hardest physical and mental roadblock I’ve dealt with in years. Slowing down when your body is suffering isn’t something you plan. So, having my first issues with my lungs since my new life is something that made me embarrassingly scared. I immediately felt like I was picking right back up where I left off what seems like such a long time ago. The chest pain, the rattle, the wheeze. The panic finding the breath for your next word. It all came rushing back. There’s all these statistics and I’m only human. The life expectancy after a double lung transplant is estimated 5 years. I do my very best to avoid the feelings that come along with stats like that, but again. — only human. So, when I started to feel in my lungs these old symptoms from back when I lived in survival mode, you can see how that could mess with someone’s head. Can my new body handle this? Is this temporary? Was I given a 4 year long pause from dying and it was remarkably beautiful but I finally did it — I used every ounce of passion life and service that You’ve given me and now it’s really time to come home? This is the truth. These are the things you think about. The things I really don’t know should be shared.

I tried starting out with at-home IV antibiotics which isn’t uncommon for me still these days, and we gave that a chance to work. Usually it does. This time it didn’t. I was brought into the hospital around day 10 of feeling the worst I’ve felt in years. I tested positive for RSV virus deep in my lungs. My pulmonary functions test which keeps track of my baseline lung strength is down the lowest it’s been since my recovery time out of surgery years ago. Normally, this wouldn’t be something I share, but my way of thinking has been changing and I’m finding it just equally as important to share the struggles along with the joys. This is the important part about mental health — my latest struggle — something I’ve spent so much time trying to avoid. I realize expressing my blog in this manner – so honestly— is in some ways equivalent to the physical care I’m receiving in this hospital – through IV antibiotics and treatments. They go hand in hand and it’s just as important to inspire as it is to shine truth. This life is about balance, and how could I expect anyone to ever understand the gratitude I’m full of if I don’t let you inside the darkness. I’m starting to see that mental health and sharing our burdens aren’t something to be ashamed about, but proud of, instead. I’m still working hard currently admitted to the University of Penn doing my best to overcome this RSV and come out stronger than before. I have all the faith and hope in the world that I can beat this — especially with the outpouring of love and support shown by such sincere people in my life. Asking humbly for positive energy, thoughts and prayer for continued patience. I’ll be sharing updates — good and bad! — on my social media accounts.

Always holding on to hope,

Sam

Baby Roman

I’m on a mission.

Throughout our lives, we’re introduced to people, places and things that strike us all differently. Growing up with a chronic illness, I’ve been exposed to countless stories of people fighting their own battles, how they survived… or didn’t survive. Every once in a while, you hear a story that sticks with you — something, that for some reason, interests you enough to want to become involved. Sometimes, there’s no rhyme or reason as to why. Well, I’ve found one — and it’s buried itself into my heart deep enough for me to feel the need to share it as far as I possibly can.

I’m a person who believes without a doubt [something] works through us to complete acts of service. Whatever you believe in, whether it be God, The Holy Spirit, a higher being, the universe & the stars being aligned, it doesn’t matter — I believe at times we are all used like puppets of a higher power — and that for reasons we might not even understand ourselves, we’re constantly being led toward a greater purpose.

I came across a page on instagram dedicated to a baby named Roman. He’s fighting for his life. For a few months, I’ve kept up with pictures being posted by his mom and even spoke to her through messages about Roman’s need to be accepted for transplant. I thought maybe because I’d been given the gift of life by an organ donor that maybe that was why I felt so connected to this sweet little fighter. I had never clicked on the link in Roman’s instagram bio until today.

I came across a picture during my daily scroll that was posted of little Roman’s hospital room, decorated to perfection with lights and caution tape and all things Halloween. It brought me back to the hundreds of times I would sit in a hospital room looking around at 4 blank walls and thinking of how I could decorate to make it feel less depressing. Back when I was seen at St. Christopher’s children’s hospital in Philadelphia, I would have my own sheets and colorful blankets, posters on the wall, a mini fridge, microwave and coffee pot. People used to think it was over the top  — try living in a little hospital room for a month and you’ll realize the need for these things.

Seeing Roman’s room decorated for Halloween lit that fire inside me and I realized why I felt so connected to this little boy that I don’t even know. In a way — we are the same. I don’t think he is even two years old yet, but all he knows of this life is fighting to survive — that, and endless love. For a long time, that’s all I knew. So, I clicked on the link in his insta’ bio and read about all that he’s been through in his short life. I read that his mom was aware that Roman had Downs Syndrome and a heart defect while she was pregnant, and just as my mom was advised, abortion became an option. This is one of the reasons I can’t let go of Roman’s story. His parents remind me of my own. When I was born, the life expectancy for children born with Cystic Fibrosis was 18 years — and those 18 years were expected to be full of pain and suffering. It would be a difficult life, but regardless, it would still be a life. My parents decided any life, even that of a chronically ill, helpless kid, was better than no life at all. I thank God every single day for their decision. That’s what Roman’s parents decided, too. I’m usually pretty good with words, but I can tell you honestly that I don’t think any words can do justice for the respect I hold for these decisions. My life, at 28 years old, is the reason I have a heart full of hope for Roman and the beautiful life that could be.

Roman is awaiting acceptance to receive the transplants he needs to survive. The real truth is that people die every day waiting for organs. I thought I would be one of those people. I wasn’t. Now, I’m on a mission to make sure this sweet little boy is not one of those people either. My goal isn’t to raise the most money, although anything at all that you can donate is helpful to their family. My real goal is to change his circumstance through the power or prayer– so that in 5, 10, 20 years — not only will I still be here, but I’ll be alive and looking at new photo’s posted to Roman’s instagram of a boy who was given a second chance at life.

Help me, please.

Help me to help Roman. Read this and share it. Share it and then share it again. Follow his Facebook, follow his instagram, spread his Go Fund Me page around like wildfire. I can say in absolute truth that support, PRAYER, and positive energy is half of the battle. I want to flood heavens gates with sincere and genuine positivity in the highest hopes this kid lives to see the beauty this world has to offer — that he is able to experience the excitement of Disney World — that he is able to breathe without oxygen machines and eat without feeding tubes. It sounds far fetched — it may sound impossible — I am here as living proof that it IS possible.

Follow him everywhere. Look at his photos. Read his story. Say his name out loud. Raise awareness and raise your hands to the Lord in the most desperate need for this boy’s life. Be a part of a miracle. Pray so deeply, so wholeheartedly, that the universe can not possibly deny the energy being poured out this little boy’s way. In the future, I hope to be able to update you that Roman has been accepted for all he needs… and when that happens, I hope you find peace and take pride in knowing you had a part in the power that changed someone’s life.

To Roman’s mom and dad — I see my own parents when I see you. Two people who have given a beautiful soul a chance at life. Two people who, if you could, would take away every ounce of your child’s suffering without question. You two, like my own mom and dad, are examples of the purest form of selfless love. Keep decortating hospital rooms. Keep spreading the word. Keep your faith and never lose hope.

Like I said in the beginning, sometimes, some stories find a way into our hearts and stick with us. We’re used to carry out works of mercy and purpose for a greater good. Help me to carry this one out. Help me to help someone through the power of prayer, and when you come across a story that hits you as hard as Roman’s has hit me, go after it with everything inside of you.

Follow Roman’s story:

On instagram @PinnedDownWithRoman

On facebook at http://www.facebook.com/romanburnette

On GoFundMe at http://www.gofundme.com/romans-lung-transplant 

Coffee with Rosemary: ☕️

If you ask me what one of the most important things in life is, I will tell you that at the top of the list is keeping in touch with the “good” people throughout our lives. I’m one who truly believes that every single person we come into contact with, from our 5th grade teacher, to an ex love, to the cashier at the grocery store, has been introduced to us for some reason or another. I like to think it’s for learning experiences, but whatever the reason, we connect with every individual differently. If you’re lucky, like me, you meet people along the way that stand out on a different level among all others. These people aren’t common and sometimes they’re not meant to stay, however, permanent or temporary, they refresh our souls, they lift our spirits, they make us think in different ways and feel such powerful energy — much deeper than what’s felt on the surface daily. These are the people you need to keep in your life at all costs – whether it’s a phone call every few months, a lunch once a year, grabbing coffee, a letter to let them know their being thought of – these actions are crucial. Which brings me to Monday’s coffee date with Rosemary, formally known to me as Ms. Goodwin, my 5th grade teacher. We mutually decided now that I’m 28 (she taught me when I was 11) that it’s OK to use her first name. (Going to take some getting used to)

Rosemary is one of the “good” people. The type of person so genuinely good that she’s almost naïve to the daily downers in this world that so easily steal our joy. I get together with her maybe once a year. It’s refreshing for the both of us. We meet for coffee and talk for hours… but what we talk about is the real key to what I want to get across through this blog post. I feel as though Rosemary and I talk about this life, spirituality and faith on a level that only few actually understand. We engage so deeply in the power of the human spirit that I actually used to be self-conscience that people would hear us at a nearby table and seriously think we were nuts. I don’t feel that way anymore. In fact, I feel privileged to feel emotion so deeply. I actually kind of feel sad for those who don’t quite understand how much potential the human spirit truly has. I look at each one of us as having this tiny flame inside our belly and unfortunately some people live their life never knowing the excitement this world really has to offer. On our normal, day-to-day routine, that flame burns low and slow – lit, but just enough to keep us fueled for that day. Here’s the way I imagine it visually: sometimes, something happens like hearing good news, a girls night out, your team wins the Superbowl or that cute guy in your college English class starts a conversation with you. Things like that cause a “breeze” and if only for a moment, our flame brightens.

This is something I’ve imagined and felt for as long as I can remember, but especially now after my second chance at life: the need to fuel that fire – and the “good” people that I’m talking about in our lives help us to do just that. Surround yourself with them 💛

I want to tell you a little bit about my conversation with Rosemary because we have a very similar outlook on this flame image, which is the real topic of this specific blog. The ways to fuel the fire inside ourselves are endless. As human beings, regardless of religious belief, I wholeheartedly believe we are all spiritual creatures with the need to feel alive — there is nothing ordinary about being a spiritual being. So, why live an ordinary life? We are extraordinary beings. Rosemary and I talked about the way so many people live with such little passion, so accepting of the “ordinary” and mundane.

I have a statement I started using after I received my gift of new lungs: my gift of a new life. I say “when it does come my time to leave this earth and I stand before God in the kingdom of heaven, I want to stand before him with NOTHING AT ALL LEFT INSIDE ME WHATSOEVER. I mean that. I want to have used every single ounce of love, passion, excitement, kindness, service, everything. I want to have used it all down to the very last drop – everything I’ve been given — my purpose, my service, TAKE IT ALL here on this earth. Only then will I be ready to leave.”

I wish that way of life upon all people.

I truly believe we have this fire inside all of us waiting and wanting to be set ablaze.

– and it should be, in some way, EVERY. SINGLE. DAY. I know this because I’ve felt it. I’ve found ways throughout my entire life to keep this fire burning. There are things, people, places, that strike us all differently but that have the power to strengthen our fire.

These are the things I talk about with Rosemary. This is why we make it a priority to keep in touch. And here’s why it’s so important…

I know I talk about it a lot, but I said earlier, some people in this world cross our paths to teach us things. I don’t believe I went through all that I have been through to keep it quiet. When I was told (four years ago) that I had only weeks left to live, I was surprised at my initial thoughts. Instead of thinking of the time that I had left, I started thinking of the time that I had already spent. Instead of wishing I had done more, experienced more, loved more — I was proud. I had spent so much time leading up to the end of my life that I worked to create a life of fullness and service that I was proud of. This included keeping in touch with all the people throughout my life that had changed me, taught me, influenced me in any way. I will admit, it was always a little different in my situation because I grew up with this “life expectancy” from having a chronic illness that lingered in the back of my mind, so from a young age I was always looking for ways to experience all this life had to offer and make the most of what I’d been given. A lot of times this way of living would get me in trouble — but I don’t regret a thing. Every once in a while, during high school, I would pack my little Jeep full of friends in the morning and drive right passed O’Hara when everyone else was rushing through the halls to their homerooms, trying to avoid demerits for not being in your seat exactly when the bell rang. Meanwhile, Carrie Underwood’s CD played on repeat and we’d sing the whole way down to Ocean City on a Tuesday morning during February. We would reach the beach, stand on the rocks at the ocean and laugh together as the waves crashed. Every time we did this, I’d close my eyes just for a second. I’d let the cool, heavy wind blow through the strands of my hair, standing still in my uniform and think, “this is it.” “THIS is life, and I’ll never feel bad for myself because I suffer, because in this moment, I’m alive.” When I say alive, I don’t mean I was living and breathing — the truth is even at this age I was barely breathing. When I say alive, I mean I had this undeniable, uncontainable energy flowing through me powerful enough to think I’d been standing on the edge of a cliff ready to jump. I never regretted these choices — passion vs. normalcy– not even when my mom text me “I’m in O’Hara’s parking lot and your car isn’t here. You have 60 minutes to get back before I call the school and you’re not going out for a month.”

Once, in college, I was walking through the courtyard on my way to a playwriting class that started in 10 minutes. It was the review class for the final exam that was two days later. I’ll never forget this day. It was springtime and the weather was just one of those days where the sun warms your face and its like an angel smiling down. The kind of breezy day where things are starting to bloom and you have to take a second to stop and be thankful for exactly where you are. Well, I did stop, and I looked down at my phone. I had a message from a friend who had a motorcycle, “Today is too beautiful not to go for a ride. You busy?”

-“Nope. Pick me up in the courtyard.”

Now, don’t go abandoning all of your responsibilities. That’s not what I’m saying. I went home later that night and studied my ass off for that playwriting exam. I got a 100. But, I assure you, I couldn’t tell you one question or answer on that test today. I can however explain exactly how the wind felt on my face through that helmet, the racing of my heart in my chest, every street we went down and the sight of that beautiful golden sun beaming through the trees when I’d look up into the sky.

I encourage you with everything I have inside of me to do things like this. Because when I was sitting in that University of Penn office, these were the moments I was thinking of. The moments in February on the beach, when I should have been freezing, but I was nice and warm – not because of the shots of whiskey we were probably taking, but because the fire in my soul was raging with excitement for this incredible life.

Now, years later, I dedicate my service to hospice care, I often wonder if our patients think more about the life they’ve had, more so then the life they have left. The truth is, at one point, regardless if your 24 with Cystic Fibrosis, 100 with heart failure, 88 with Alzheimer’s, or 40 with liver disease, there is going to come a time where you too will be at the end of your life. I want those of you that I’m able to reach through writing to take advantage of this information and make it a priority to be constantly fueling your fire. If I hadn’t lived my life feeding this fire by young summer nights, giving and receiving love, serving others and following my heart, singing out loud and recognizing all I’ve truly been given, I would have had nothing to look back on. It also turns out, during that time I thought was the end, I had an awful lot of people…”good” people there for me, praying for me, keeping me in the best possible places to be — in their hearts, their minds and their prayers.

Before I close, one of my strongest passions happens to be with the elderly. I don’t know why. Some people have the passion for working with babies, animals, children, abuse victims, etc. I’m also aware that although extraordinary in a positive way, this life can and is often times EXTRAORDINARILY HARD, too. Not everyone has the privilege to work in the field where their heart lies, but that’s no excuse to let your light burn out. Make it a priority to set time aside for what really makes you feel alive.. even if it happens to be something simple, like making a call to an old friend to keep the “good” people in your life. And if you take anything at all from what I’ve written today, remember to feed your fire, so that when your time comes, and you think back on the life you’ve lived, the love you’ve provided and the compassion you’ve given, you’re proud. Leave nothing left. Use every since ounce of your energy, kindness, passion, service, heart, soul, all your love, all your light. You’ll be amazed at what you’re filled with in return.

My First Post:

Welcome to the “My Second Life” blog.

I’m Samantha. I’m 27 years old. Nothing about my life is ordinary. I sincerely hope you enjoy all that I have to share.

Naming my site was much easier than I anticipated. I decided on “My Second Life” because in a sense, the past few years I’ve been living what I consider to be my second chance at this extraordinary life — and living is an understatement. Thriving, better describes life recently, and I’m really excited to share all the reasons why.

Here, I’ll be sharing everything from growing up with Cystic Fibrosis, to how I stay positive & full of faith through trials, my journey after receiving a double lung transplant, and how through all of these experiences I manage to live a life full of excitement, passion, adventure, and most of all, gratitude.

Starting a blog is something I’ve considered for years but also something that was always just a little too far outside my comfort zone. One of my biggest fears? No one will read it…. or care. What was scarier than that was, what if people actually do read it? What will they think? It’s literally taken me years to get over that. I’ve never been an over-sharer. Actually, I’ve never really even been a sharer. I once dated a guy for a year and a half before even telling him I had CF – Cystic Fibrosis – an incurable lung disease. I hid hospital stays, PICC LINE IV’s, coughing up blood… hid it all because I was afraid to share the real me. I did, however, always find writing to be therapeutic. So much that during my sickest times, I wound up writing an entire fictional book about a rockstar who suffered from Cystic Fibrosis like I did. Honest to goodness. I wrote an entire 75,000-word book about fictional people because I wasn’t comfortable enough writing about myself.  All of that changed, though, after I received the gift of life.

I apologize in advance for the length of this post.

It’s my first one though and I want to make sure I don’t leave anything out!

Here’s the shortest version I can make of my story: after suffering for years in my early 20s on oxygen tanks, feeding tubes, poor quality of life and failing lungs due to Cystic Fibrosis, my doctors at the University of Penn told me I had weeks left to live. This was four years ago. Dying young was something I always anticipated. I knew the reality of my disease. I can’t say I “accepted” the fact that I would die when I was 23, but the news didn’t surprise me. I had spent my life up to that moment actually waiting for that moment, but when it finally came, it just didn’t feel right.

I lived what I thought was a pretty eventful life up until then, too. I did my best to experience what I felt most people my age should have experienced. I went to high school, played sports, went to prom, tried college, fell hard in love, had my heart broken. I’ve had true friends and fake friends. I’d been to Disney — (a necessity for what I consider a well-lived life). I’d gotten drunk… too drunk. I stayed out too late and had my share of rebellion. I experienced death of a loved one. I experienced so much goodness in life, too. I chose to see miracles when others chose to see coincidence. I knew what it felt like to be loved and surrounded by family and friends. I spent most of my time as a nursing home volunteer because I was always too sick to hold down a real job — but I had those for a little bit too. Because of all these things, I thought I’d be more “ready” to die. But I wasn’t. There was something missing. I felt as though, even with all the living I thought I’d done, I hadn’t yet found my purpose. If I were to die in the weeks ahead, did I feel accomplished enough to actually leave this world? Is this something a 23-year-old should have to think about?

I was given an option to be listed on the transplant-waiting-list. I couldn’t believe this was something people actually had to think about. To me, it was just so simple. Do you want to let yourself die, or do you want to do everything you can to try to live? To this day, I firmly believe it was the greatest choice I’ve ever made. After transplant is full of its own hardships. Like, an ungodly amount of hardships, but they are worth it. This life is worth it. I try my hardest not to judge those who forgo the transplant, but I’ll never understand. I wholeheartedly chose the list. Even if I died during the surgery, at least I could say I did everything in my power to keep living. I was told to be hopeful, but realistic. I had weeks to live and some people on the waiting list had been on there for months – even years, but once my name was on that list, I had no doubt anymore. I could feel in my bones that I was getting a transplant. My heart knew; my soul knew. My spirit was too full of life to end and I realize now, my life hadn’t even started yet. All the living I thought I’d done was so insignificant in comparison to life after transplant and I want to share all of the beautiful reasons why.

I was placed on the list June 4, 2014. I was called with a perfect match on June 24th, 2014 — 20 days. I hope you  understand why I see miracles now. Because I am one.

Recovery was hell. Four years later I’m still recovering. I’ll be recovering as long as I live — and I’m proud of it. I won’t list the hundreds of setbacks I’ve dealt with because they’re all in the past. They’re negative and no one wants to hear about negativity. I will tell you, however, how I finally found my purpose.

I wasn’t cleared to work after my surgery. I never finished school. I’d lost touch with a lot of friends. I was still heartbroken over a relationship that ended after I disclosed how sick I really was. All I really had was my faith, and my team — a  group of people who never left my side and did everything they could to keep me fighting for life. That’s all I needed.

One night when I couldn’t sleep, I was up on my phone thinking of ways I could give back to this world for blessing me with a second chance at life. I thought because I had been so close to death, that maybe I had a calling in hospice care. I had a very unique perspective and connection with hospice patients, since I was one of few people living who could understand what it was like to be at the end of your own life. I applied for a volunteer position with a local hospice. I went through an all-day orientation and a couple weeks later was assigned six patients to visit at different nursing homes. I was surprised at how naturally it came to me. I could talk to these patients about anything. Unlike other volunteers, I had nothing but time on my hands because I wasn’t working, so I would just keep asking for more patients to visit. I did this for 6 months before my doctor cleared me for a job. I was doing so well, even with my setbacks, that my lung transplant doctor said if I want to find a little job, I was healthy enough.

This scared me because I’d never been capable of anything normal before — including a job. I always had being sick as an excuse to have not finished school and to not have worked. Now, I was healthy for the first time in my entire life and I had no idea how to handle that. Fortunately, God is never without a plan and I’ve seen his hand in my life so clearly that it’s impossible to deny. That same day — THE VERY SAME DAY — that I was cleared to work, I got a call from the current Volunteer Coordinator at the hospice I was volunteering for. She was going back to school to become a nurse and before they posted her job on their website, they wanted to know if I was interested in running the volunteer department. This was just the beginning of the storm of miracles that poured down on me after I started living this new and grateful life full of passion and excitement. This position was no coincidence. It was and still is exactly where I am meant to be.

I took the job.

I met the boy.

I did all the living.

Just like that.

I plan to tell you all about the boy and the living and the adventures and the LIFE in future posts.

God, there’s just so much ground to cover!

We’re almost done but know this — while I was still in the hospital only days after my transplant, I visualized this blog. I really did. I thought of the pictures I would take doing things I had only ever imagined — like being able to breathe normally enough to go for a hike. To see nature and leaves and trees and feel the breeze on my face and be able to breathe it all in. I thought of being able to sit on the beach for hours without needing my dad to carry me to the car for a portable nebulizer because I couldn’t breathe. In the hospital, I could close my eyes tight enough to actually feel sea mist and the warmth of sun on my face.  I thought of the simple things people take for granite every day that I had lost the ability to do, and how good it would feel to do them again — simple things like sing in the car or walk the mall — or adventurous things like go to concerts or swim with dolphins – WHICH I DID and can’t wait to share with you! I imagined pictures of these things in a scrap book with handwritten stories under them. I imagined being in the arms of a man who accepted me for all that I’ve been through and all that I am now. I never knew what these things felt like. Well, I do now.

Four years later, I have hundreds of pictures and almost unbelievable adventures to share. Through a fighting spirit for life and the deepest faith, a lifetime of suffering and an endless spirit of gratefulness, I’m now able to really live. Like, really live. Not just be alive, but thrive. I can love, I can laugh, I can live, I can feel, taste, see, smell, dance, cry — I can do anything. I feel invincible. Unstoppable. Unbreakable.

I’ve gone zip-lining, rode an elephant, swam with dolphins, rode in a hot air balloon, went to the Florida Keys, spent the day on a fishing boat, rode on jet-ski’s, hiked trails, parasailed! Life just started and it’s the most beautiful experience. Even the “ordinary days” are extraordinary. This world recognized my determination to live and that’s exactly what I’m doing — every single day.

I plan to share all of these adventures with you through this blog.

I hope through all I have to share you find positivity, faith and the inspiration to reach for the stars in your own life.

There is so much more to come 🙂

-Sam 🙂