Goodbye 2025

2025

It was the year of growth and acceptance. After some rough situations emotionally and physically I feel like I still came out ahead in the end. 

It didn’t always feel like I would get there but I did. 

In 2025 we shed the stigma of mental heath. Not because It was cool and fun but because it was necessary to survive. My emotional well being was tested and it took the whole team to rally and come out on the other side alive and intact but we did it. 

We handled medication side effects. If it could happen,it did. It was also trial and error but it was necessary to figure out what exactly would benefit me. 

Modulators are a miracle, just not my miracle. I tried and failed. I almost took out a few things on my downward spiral but thankfully all is well. 

We let go of the things that held us down emotionally and physically. Saw the evil that looks in your eyes and tells you they love you but their actions and words are anything but love. We don’t need love disguised as manipulation. We need pure love with no conditions and restraints. And to put it simply some just cannot meet our needs and that’s okay. We just don’t pull a chair for them anymore at our table. We don’t sit at tables where we are the subject of manipulation and greed. We value love and communication, even when it’s hard. Always love those that meet you where you are at. 

We celebrated every chance we could. Big wins, little wins we ate that fuckin cake! (Sorry Mom)

We became tighter and more bonded through every tear and smile. Always together.

We saw growth from everyone. Some hit milestone birthdays, some got new freedoms with a drivers license and we even had a few sporting events to attend. We see progress in the little achievements some might take for granted. 

We are making memories in 2026. Get on the bus and let’s gooo

Happy 40th birthday Aaron

I may not be the best sister in the world, but don't for one second think I wouldn't burn this world and everyone in it for you!

I’d burn every motherfucker if it meant saving you. Giving you any thing you needed or even for your peace. 

I remember on one of our cruises we were young. Just kids. Babies really now looking back on everything. I was scared and I looked to you. I needed you and you were there. Taking over the situation and handling it like the big brother I needed in that moment. Just looking back on that I should have known that in that single action it sent off a reaction that would carry us to where we are now. You taking care of me when I need you the most. Stepping up to a job you never signed on for. It breaks my heart that we ever had to lace up our boots to go to war against something we could never win. And honestly the chances of us winning really depends on what you consider a win. 

It’s easy and in this moment to think back to why did this have to happen to me?To us? How did we get so unlucky to have a disease with no cure  come crashing into our lives. And in a matter of years things get so off track 

My Aaron. You are officially in your 40s. The older we get the better we get. That’s just facts. I can say with 100% certainty you are someone that others wish they had in their lives. Everyday you make me proud. You make us all proud. You are the big brother to so many. And little brother to everyone else. The son they wish they had or just someone in their corner that they appreciate and know for certain you have their back.  Iv seen you come along ways in 40 years. From bottles and toys to bigger toys and becoming exactly who you supposed to be. I got a front row seat and man is that an honor. I got to be your sidekick and still am. But I wouldn’t trade that for anything. 

Now you have a few different things happening in your life, they sit with us. They laugh with us. And they are loved by us. But the best part is seeing them with you being loved. Uncle Aaron is in high demand these days. Man does this fit you. You do so well. You are a comfort to them. You look at your niece but you are locked in to her eyes and her heart. You’re seeing her emotions. What’s important to her. What her school is doing. You care. It shows on her face when she hugs you. 

I don’t ever want their be a moment where you wonder, did my sister love me?  If you ever have to ask you that then I failed. 

And yes it broke my heart not being with you to celebrate. It was hard. Everything I wen’t through with transplant my motivation was always the things I would be a part of. The wedding. The house. The holidays and also the mile stone birthdays. So yah when I need to protect my health and that interferes with your 40th birthday I’m sure you can imagine the emotionally hard place it put me in. 

Aaron. when I look ahead and I see your fourties’ I see amazing things. the biggest thing is all the love you will be surrounded with. 

Be safe. 

Our community

There are people in the community who stand as pillars for all of us. 

They are the ones who have led the way in health and other obstacles that we, as people living with cystic fibrosis and transplant know are in our future. They conquered it showing us what is possible in the future that lies before us. Showing us that strength in our weakest moments is possible while also lending their knowledge and support to anyone who is walking in those same shoes. Giving us hope for a future that isn’t perfect by no means but better then the hell we see in our day to day struggles. 

They become our inspiration and that story where we say “but so and so did it” and I can do it too. They become our hero’s and the face of something better through the struggles and tragedies. 

And then as quickly and quietly as they become our inspiration, they become our angels leaving us heartbroken trying to understand so many questions that we will never understand. Showing us that there is beauty in the fight and winning isn’t always old age but being able to lay surrounded by the ones we love who have given us the most support and simply being loved in our final moments. Taking our final breathes…the ones we struggled all our lives for to simply leave this world and move along to the next. Being greeted by all who went before us. Friends and family gathered as we enter the life we only dreamed about, living the life of true bliss. 

These are the people who make this community what it is. Something we never asked for but here we are together deep in the midst of some of our hardest battles 

Angels among us. 

It’s been 5 years…

It’s been 5 years since I walked outta the hospital. Here are 5 things I have learned 

 

  1- The physical things I have endured to get to this point in my life is sometimes mind blowing.Its amazing what the body can handle. Even though I see the scars and they are a constant reminder of the resilience and strength it has taken to get me where I am today, nothing compare to the scars that you can’t see. The survivors guilt that hangs heavy on my heart as I remember the people who have gone before me and even watching the ones who are currently struggling to find normalcy. It weighs heavy on me. My donor, someone i don’t know who is constantly on my mind and how I have this responsibility to live life for them and honor them. 

  2 -Physical changes are hard. After 5 years I still look at myself and sometimes don’t recognize the girl looking back at me. I’m proud of what my body has handled but it’s visible to my eyes. The puffy cheeks. The bruises that pop up randomly. The weight that I have gained is sometimes hard and if I’m being honest it’s hard to be crucial of my physical appearance when I’m just lucky to be alive. But I try to embrace it but it’s not easy to look like someone completely different. 

 3- being naïve. I was under the impression that when I got my miracle, things would be so very different and that I would have some normalcy and start to have somewhat of a normal life. My life is filled with doctor appointments for so many teams. Transplant, cystic fibrosis, liver, woman’s health, endocrinology, mental health, ENT. Don’t forget about the testing. Blood tests, X-rays,ct scans, mri’s and pulmonary functions. The list only gets bigger and the further out we are it seems like problems just pop up.  

  4- support. As lucky as I am to have the support I have. It sometimes feels like it’s too much of a burden to everyone. The appointments the tests the procedures and the need for support and reassurance. I don’t drive so I depend on others to get me anywhere and everywhere. It’s amazing the people who step up and show support in little ways and big ways. The check ins and the messages mean so much. But it still hurts when I think of the people who said they would be there for me and for my family but they aren’t there. They disappeared and I know it’s for the best and whatever reason it is, I don’t hold it against them…but the hurt is sometimes so powerful and overwhelming. 

  5- being so fragile. Medically and physically and even sometimes I find myself having a hard time with the emotions. I get angry and then sad. I’m upset with the fact I’m 38 and struggling to find a path for myself because I have no choice to just be a patient and take care of myself. It’s a full time job and there are no days off. No one to cover for me or give me a break. It’s 100% my responsibility. It’s heavy and somedays I can’t carry it all. And that makes me feel like a failure. I’m not a weak individual, or at least not in my eyes but there are a lot of things I simply can’t do. And in all honesty even though it’s silly things it’s hard to wrap my mind around. 

The thing is, I got my miracle. And when I say I’m very lucky it’s an understatement. I’m fortunate to be where I am and it’s not a bad life by no means. It’s a great and beautiful life and I’m blessed to the extreme with the support and love and everything. So please don’t take the above as me complaining. It’s me being honest about my situation. 

Here are 5 quick things that I have learned that are more on the positive side 

1. Love is powerful and will help in every situation. 
2. The compassion of good doctors and nurses make things so much easier and I appreciate them so much.
3. When you have a great support system and team, you can handle anything that gets thrown your way
4. The connection you have with someone who has walked the same path is something that nobody will understand unless they to are on the same path. 
5. Even on the darkest days there is light, sometimes you just have to look for it. 

I’ll end my post by letting you know 5 years go by fast and even now the memories are still strong and present in my mind, but now I seem to have stronger feelings of happiness and not so much trauma. 

Friends, somedays are hard and somedays are easy and then some days are in between. But everyday is a good day in some way. I’m so blessed to be here and write to you all. I send you my love 

 

Into 2025 with a bang

Maybe this wasn’t a year where everything and everyone came out on top, but we survived. Some did better than others but that’s okay. We made it 

I’m learning as I get older and life progresses and everyone ages, surviving is a great accomplishment. And just for that I’m grateful. 

Like every year and every year before it, it’s been a roller coaster of a year. Some of the highest highs and lowest lows. But through it all we have remained together continuing to concur every single obstacle, some put their head down and some swear to get through it. But together hand in hand and leaning on each other we made it. 

In 2025 I have hope that things will level out and we will ride the wave of normalcy but honestly it’s been so long I don’t know what normal looks like or even feels like. But that’s okay, even through it all I find happiness in the little things and the small moments where I see love surrounding myself and everyone else who I hold dear to my heart. I see others thrive and flourish and it brings me a happiness that fills my heart almost as if we did it together. 

I have never endured my hardest battles and hard days by myself. I’m grateful for that simple sentence. Those who stand next to me are never silent, always saying into the world what sometimes I just can’t find the strength to say. To speak words of encouragement or positivity when I fail to see the bright side. Speaking of my strengths and abilities when I sometimes forget everything I’m capable of. It’s easy to look down at the ground and put my head down with everything life throws at me, constantly humbling me reminding me that my life has sometimes been an uphill battle to just simply breathe and exist among my peers and my loved ones. 

This year, there has been good moments that I hold on to. Good memories that fill my head at night when the depression creeps in trying to steal my happiness. Those moments are like a light that shines bright defeating the evil that lurks in the corners of my brain. 

Along with the memories are the bonds and relationships that I have strengthened this year. I feel like they came in my life when it was needed. Not because I was sad or needed the support but possibly because I needed to shift my thoughts and the way I perceived some of my biggest struggles. I’m a very fortunate person in many aspects of my beautiful life. 

Yes,despite so much I have a beautiful life. The love I receive is the kind of love that makes you a different person. The kind of person whose cup is so full that I have the pleasure of filling others cups for the simple reason that I can and it brings me happiness. 

Happiness. That’s what I wish for you in 2025

Hey dad

 Hey dad. Remember that time I was sick and you crawled in bed with me and held me so tight that I wasn’t scared. 

I remember being so comforted by your presence and your calmness. You stay cool under pressure and I did not get that from you. lol, sorry mom. I remember the whole process scary and daunting. I don’t think I ever realized how sick I was until it was to late. I remember calling you before being treached, you were so calm. Saying you would be there as soon as you could. I barely remember that call. It came back to me after the fact. But before I was put on the vent, you weren’t there. And I’m glad you didn’t experience that. I remember the first time seeing you after the transplant. You sneaked in, and although I couldn’t tell you I was thrilled to see your face in those yellow gowns. Yellow isn’t a good color on you btw. I smiled so big. I was in pain and unhappy but your face is so bright and vivid in that memory 

Daddy’s little fighter is what you use to say in updates and texts. And although I didn’t think I was that strong I surely proved myself wrong, but looking back I had it in me long long before. 

Hey Dad. Remember when I was in the hospital and you would come down and spend some time just the two of us. It was always my favorite cause I usually had your attention. We would go for walks. And the one time we broke out and went to get ice cream. Oxygen and all. 

Little did we know in a matter of months we were fighting for our lives, that hospital stay was a struggle. I started using oxygen full time and my home address was in San Diego. Not at home with you. But we still managed to have our dates just with an oxygen tag along 

Some times I don’t know how i got through that time Dad. As much as I was your “little fighter” I was tired. But a miracle happened 

Tears rolling down my face as I wrote this. It’s another Father’s Day I get to celebrate you. I thank my donor every day because I just don’t know how to live without you and thankfully I never have to worry about that again hopefully for a long time. 

 I love you daddy always have and always will. You will forever be my number one guy. The first love is a daughter and her father. And how lucky am I, that God saw me and knew I belonged with you. 

My mama

  My mama is my rock. Someone who isn’t even a 0.1 % replaceable. My mom is better than yours. There isn’t a point in arguing that with me because I have seen my mom go beyond measures to keep me alive.  Not even happy. Just alive and breathing. I have seen the fear and worry in her eyes as the light faded from my face but I never saw her step away from the roll she was destined to be. A mama.  I always worried if something happened to me how would he still be a mama to Aaron. And as I sit and think about that sentence in pure logic. That’s who she is. She was born to be a mama and nothing could take that away from her. She is a natural. Everyone is her child. I have seen her mother countless “strays” but always the same she gets attached and loves them and they love her back because they never had a mama like her. She’s kind. To a fault. Smart to the point where you have to take a Second look at her because you’re just amazed. Funny. She will make you laugh so hard that you cry. Just her being her. And I love when we have those moments. Those are the core memories where I step back and thank god. I thank god for giving me back to my mom whole and new. I thank god for giving her the strength to love me and raise me unconditionally and in my opinion to be a pretty rad human. That she’s my favorite person who I never seem to get tired of. When I lived in the hospital she made that drive and put a smile on her face everyday just to see me smile knowing so much was against us but that smile every day walking through the door gave me life and hope. I knew what I was facing but if my mom could walk in with that beautiful smile I knew we were okay. Her and I would get through this together side by side and like I hoped only made us stronger and closer. Maybe with some trauma but what’s a little trauma between family. So tonight I’m laying in bed thinking about my worst days and remembering the shining light who loved me through life and death. My mama. My mother. My mom. My best friend who’s my ride or die. To my mom; We made it together and you make me proud everyday. Stay sassy. Stay rageful. Stay amazing And you will always have the love of a daughter who thinks the world revolves around you. 

 Xoxoxo

Dear Aaron

Dear Aaron. 

Today is national sibling day. So it’s just another day to celebrate you. Not that I need another reason but I’ll take it. 

Aaron. Everyday you amaze me, you’re strong smart witty and have the most caring heart. You make me proud ever dang day…sometimes it’s frustrating how perfect you are but then I remember how lucky Iam to be on the receiving side of so much you do. Not because I ask but because it seems like your goal is to make my life special. And you succeed at it daily by just being you. being your sister makes me proud of the man you are. The husband you will be. 

I remember after my transplant how attentive you were and I kinda thought maybe after I got outta the woods things would change but you are still as attentive as ever. Making sure I’m doing my best and encouraging me every day.  Making sure I’m okay mentally and physically 

Being proud of you is nothing new. I always was proud to be your sister long before Cf came into the our world. But after you stepped up. Always watching me and on the background trying to find your place but the minute I called on you, you stepped up right to the front where I needed you and where our family needed you and i know that wasn’t an easy task to ask of a young man. 

So I celebrate you just a little extra today with joy in my heart to be your sister and for you to be my best friend. Not everyone has that luxury with their siblings so it’s something I cherish. Just like I cherish you. 

Aaron aka dragon. 

 Thank you

Happy birthday Dad

 Mike, 

Everyone should have a Mike in their life. And if you don’t have a Mike. I’m sorry. 

Mike is giving and kind to a fault. He loves almost everyone he meets and instantly becomes a dad to them if they need it or not. Full of honesty and good advice and laughs; Mikes down for a good conversation 

Mike likes to buy things. Anything and it 1 is good so is 4 or 5 or even 8. He always wears jeans and boots. He loves America and our flag. Mike is a patriot but not an obnoxious one. 

Mike supports me in everything I do or try to do. He is a cheerleader when others put me down or make me feel stupid. He gives the best hugs and wraps his arms all the way around you. Like a bear hug, but from Mike. Mike is generous to me and I’m always appreciative of the support and it means a lot when he steps in and I don’t have to stress. 

Mike likes to travel anywhere. He has a 5th wheel trailer but prefers to stay in hotels. Mike likes to sing to the radio and listen to his music way to loud and especially loves a good acoustic arrangement. And loves how music can change his mood from a good day to a bad day. 

Mike loves tea. Unsweetened black. With lots of ice and is always down for a Starbucks ride. Mike spits a lot but I have gotten use to it and the scent is a comforting reminder of him. 

My Mike is my dad. My hero and the one man who has been constant my entire life. Always provided for me and my family and never comes home without a smile. At my worst I looked to him for my strength and he always had encouraging words when I was down or tired. He still to this day is that voice in my ear saying you can do it, you’re capable. He listens to me sing in the truck not very good but never complains. It’s true a girls first love is her dad and that’s been true since the day I was born but our love has gotten stronger after so many years. Maybe it was cystic fibrosis and a bleak outcome that bonded our family the way it did and for that I will forever be grateful we stuck together and not divided. But the glue in this family is a strong man who loves his family every day and night. Through the good, bad and in between he still stands. That’s my dad 

 Love you Mike. Aka Dad happy 61st birthday 

Lizzy

 How do you write a tribute to someone you don’t know but at the same time walked the same path. 

Lizzy left an impression on me. Her style and the way she handled life. We didn’t have much interaction but she spoke to me in so many ways. She and I walked the same path thru cf and lung transplant and I had always admired the way she carried herself with attitude sass and spunkyness.  When we loose someone who has walked the same path a piece of us goes with them even tho I don’t think that’s what Lizzy would want but that’s our lives. We are all entwined together through our struggles and our triumphs. The ups and downs only draw us closer to our community and the ones we love. And boy was she loved by so many. When someone we adore and admire looses their light ours tends to burn a little less brighter knowing they are at peace and resting without the burden of being well, sick. Life is unfair at how god chooses his angels and when he calls them home. Although some say and many believe he has a purpose I doubt that sometimes. Why her.? Why now? What about everything she went through just to live 4 beautiful and glorious years but they were a struggle with so much pain and happiness mixed together. All I know is she went out on her own terms like a true warrior. She called the shots until her last breathe and that leaves me standing in awe of the woman we loved, Lizzy

Warrior

 A warriors death is what I strive for. Something leaving everyone in awe of the courage and strength you have. Having that moment where people stare and take their breath away at the way you handled your life and celebrate you for not what you could have been but the bad ass you are. And the way you walked away from a disease that’s taken many great warriors like you. Making transplant look like a fairy tale story knowing good and well there were so many ups and downs that you sometimes struggled to hold on the roller coaster that comes with a transplant. All while keeping people looking on wondering how she does it.  A warrior never lets on to the pains and struggles inside, the fights you battle silently and the tears you shed when no one is around. The life you could of had is a dream that occurs nightly and feels more like a nightmare. Waking up with your fists balled ready to fight in a moments notice. Gritting your teeth so much you wake up with headaches but nothing is as painful as that dream that replays night after night. I wasn’t made to be a warrior I was born a warrior and when you had the chance to shine you showed the world what you were deep down. A warrior. A warriors death is for me. 

so thankful

Dear God,

Thank you. I never thought i would be so grateful for you but you continue to amaze me and bless me in so many ways. You saved my life when you didn’t have to and ill forever be grateful to you and my donor family and i pray every day they have peace knowing they helped someone continue there life and become more then a person bed ridden with disease and depression. I have bloomed into a real person, I know that sounds dramatic but i have real life problems now and I’m forever so blessed to experience a second chance at life.

what I’m really thanking you for is saving my brother and Krystal. The accident they were in could have easily taken them away but instead you watched over them and they walked away. They walked away from a horrific crash and i know i have you to thank. If you would have taken then from me, we wouldn’t be friends and i would never let you off the hook for taking my best friends but you are a kind god, a merciful god and saved them. I’m forever in your debt. See loosing them means i would loose so much of my heart I don’t think i could survive with so much of my heart in heaven. So again you saved me. Maybe you knew that those 2 souls were destined for great things and there love would leave a ginormous place in so many hearts but whatever and why I’m grateful for you kind heart towards my family that terrible night. A million thanks and also i wont forgot, i promise

happy day to my big brother

Happy birthday Aaron

Today you are 36, 36 years of being you. Strangely unique and confident. Kind and big hearted and strong willed and the best protector and strong family leader. I’m so proud of you everyday the way you love others and are kind to all you meet. I never met anyone who didn’t instantly love you and adore you. It’s your burden to be the popular one and the reliable one. 

Going through transplant made us closer. Mostly cause I let you boss me around but it’s all out of love. The way you look at me with those devilish sweet eyes showing so much love and concern for me. Together we made it through the hardest of times and still to this day 19 months later you are still my biggest supporter and cheerleader. I did a lot of what I went through for you. I couldn’t imagine not having you around to annoy me. Make me laugh and protect me. You always were so concerned and listened and did everything the doctors wanted and kept me accountable and still do to this very day. I don’t know when you grew to become this protector or me or the family but it sits well with you and looks good on you. 

I know sometimes the weight of it all is heavy on your shoulders. But you handle it like a bad ass. I’m so proud of you chubs and here’s to another year of you being the bad ass, the pirate and straight gangster of the family. 

 

 You are the wind beneath my wings and give me so much strength I feel like together we could concur some crazy shit….oh wait we already did. 

Dear Friends

Friends I need to get this off my chest, the weight I'm carrying around is to heavy for my heart and soul...

Maggie, Megan, Stephanie and Melissa and Maria, you deserved better and it breaks my heart you didn't get to experience what I feel right now. Its survivors guilt to the extreme. I have been blue these past few weeks and I didn't realize what I was experiencing. Everyone of you have a special song that takes me back to the day you passed away and I constantly hear them and are reminded of the terrible loss.

 Maggie-View fron heaven- Yellowcard
 Megan- Lady Gaga- poker face
 Stephanie- If I die young -The Band Perry
 Melissa- See you again-Wiz Khalifa 
 Maria - Sunflower Post Malone & Swae Lee

This is a new struggle for me and I'm at a loss at how to turn things around. I miss you guys so much and it doesn't seem fair. Im doing so well and thriving for the first time in my life and I just wish this was all a different ending for you girls... You deserved better. Please know your in my heart and I think of you guys every single day and it brings me joy to think of you all in heaven looking down on me and watching over me, blessing me with the best guardian angles. Maybe you all have met and instantly became friends because of your love for me. I can find joy in knowing your together, happy and healthy and for the first time in a long time even though the hurt is strong, I don't long to be with you quite yet, I still feel like I have a lot of living left and now I have a donor I need to make proud. Maybe when its my time you all will be at heavens gates to welcome me and that brings me joy knowing no matter where I go and what I do I will never be alone.

Ill leave you girls with happy moments.

Maggie- your sweet 16 was beautiful and such a joy to be apart of that monumental occasion. your independence was something I never saw in another person and your will to live and live the life you wanted was amazing and something you held strong onto even towards the end.

Megan- Constantly talking to you and watching you live your life after getting lungs, sending you a care package before your Lady gaga concert. your love for you sisters and the lord was in everything you did and it showed.

Stephanie- my little sister who I really got to spoil and send some amazing care packages and the smile on your face was worth it all and id send you a million more packages just to see that smile. Being you big sister is the biggest joy of my life, I hope you know life never was the same without you in it,

Melissa- My little Pinky...Meeting you when you were so tiny and getting to watch you grow to be strong and independent and just a force of energy. Gifting you your computer when you were really sick and driving to the hospital and seeing that smile through a mask was the best Christmas present ever.

Maria- My sunflower. My gangster cyster, your strength to get through all you had was amazing and so inspirational. Your love for your son and how you were an amazing mentor for me when I started the transplant process I could talk to you about my fears and concerns and you were always right with me. When you passed I cried and cried. thankfully 2 west was there to support me and I'm sorry I couldn't make it to your funeral but you know I tried but being in the hospital was where you would have wanted me to be.

Life isn't as bright with out you girls in it but after receiving my lungs I'm trying to find that color in different ways, maybe it isn't meant to be as bright but I'm grateful for the light you did bring into my heart. I love you ladies and I hope to make you proud just living a life you should of all had the chance at.

sincerely your friend
 Jessica

Dear Donor

Dear Donor,

 I don’t know anything about you and I hope one day that will change and ill be able to put a face to the person who saved my life. See I was close to death before you made the selfless decision to donate what you could no longer use. You gave me the ability to breathe on my own only days after receiving my double lung transplant on 2/2/2020. A day I’m sure your family looks back on and feels sadness my family will celebrate the second chance I got and we will celebrate a selfless act. I don’t remember much as the days leading up to the surgery I was very out of it. I don’t remember getting the call or the emotions that go with it and if truth be told I’m glad I don’t remember because just listening to the stories my family told me makes me get a lump in my throat. I don’t remember having any white light moments but I know if it wasn’t for you I wouldn’t be writing this letter. After my surgery and waking up knowing you gave the ultimate gift I couldn’t help but find myself crying randomly knowing this was a huge decision on your part and wondering am I worthy of such a gift. Would I go on to touch peoples lives and make organ donation a topic in ever conversation spreading awareness everywhere I went? Would I find the strength to become this person who worked out and hiked so much putting these lungs to work. Truth is its only been 2 months and only time will tell who and what I become but whatever it is I’am grateful. Grateful for the opportunity to live and breathe and to be a wife. To be a sister and a daughter and a dog mom. I don’t know how long these lungs will keep me going because with transplant you are living on borrowed time but I can tell you for as long as cam breathing I will always have a grateful heart to the person who gave the ultimate gift to a stranger.

first dry run

I had my first dry run Nov. 10th, it was a whirlwind of emotions and sadly the night ended with me leaving the hospital without shiny new lungs but I'm thankful for the experience because 1. it was a great learning lesson. 2. one call means another call could be coming shortly. 3. I realized how much I truly want this. You see I had doubts about transplant. I was and still am scared for the whole experience but leaving with my original lungs made me sad and disappointed to come back to living with oxygen, I let myself imagine a life free of the leash of an oxygen cannula. Even though using oxygen has only been full time for about 2 months its 2 months too long for me. Don't get me wrong I manage and am fortunate enough to have portable oxygen for traveling but the image of me being free set my heart of fire and it was a desire I didn't know I wanted until I got the call. The call was so nonchalant; Is this Jessica Benson? yes, well good news we have lungs for you. No way. yes. are you for real?? yes this is real. Holy Shit. Yes Holy shit is right. I then got some information and then thats when the emotion and madness set in. first of was telling my family who thankfully were all at home and in one place. As moms crying I'm like I got the calll lets go!! after a short break to take a shower and throw some clothes in bag we took the longest drive down to san Diego ever. Felt like the longest ride but really with Dads driving we made great time. Once at the hospital I was put in my normal floor (yay 2 west) and I was lucky enough to get a double room blocked off for me so Matthew had a bed to sleep in while we waited. from 7-4am we waited with a few doctors coming in occasionally to update and sign consent forms. Lots of blood work too. I managed to sleep for a few hours after my best friend made the drive down to visit and braid my hair. AT 4 something they said the lungs were not viable for surgery and I was able to go home. Just like that my new chance at a new and improved life was gone. Im thankful though that the surgeon has my best interest and thankfully I'm not in a position where I need to take lungs that are less then perfect. My perfect set of lungs will come and it will all be alright. Man what a night. Id like to give a shout out to my Mom and Dad who paced anxiously for hours. My Brother and Krystal who brought snacks and blankets and Dinner and waited with us for every moment. Matthew who slept but was there every time someone opened the door, My mother in law Zena who sat in the room with Matthew and I and watched us sleep and made sure the blanket never fell off me while I napped. Brandy who dropped everything and drove down to visit. I received so much love and prayers that I don't think I could be any more loved. I'am one lucky girl.
 Goodnight my friends

just a thought

I have noticed something Cf slowly stole from me, my laugh. when others have theses amazing laughs I can't help but feel jealous when someone busts out a full belly laugh...it sounds so amazing to my ears. I have noticed I just slightly chuckle quietly not to disturb my lungs because any cystic will tell you when you laugh like a true laugh it turns into a coughing fit. A coughing fit that makes it hard to. breathe so those laughs come few and far between. Its amazing the things cf takes away and some come so quickly and some seem to take longer but cf is awful and it makes me sad to know its been so long since someone has heard me laugh. I was being evaluated for a lung transplant but was told I was to healthy so I got discharged from there full time care and only see them every 6 months, I was hesitant to even start the process. I felt like I didn't deserve to have a second chance that there were others who deserved to have more time and experience more love and support. see I have lived a full and happy life and if I died tomorrow I wouldn't doubt the love I experienced is enough to last me a life time and understand I have lived a full life. I started to think of the opportunities I would be able to experience and I started to think maybe I was deserving of a more time on this earth. I still believe I have time and transplant is in my future but down the line like maybe a few years if I'm lucky. I wanted to travel. I wanted to hike and work out in the gym. Swim without the fear of drowning but mostly I wanted to hear my laugh again. So someday when I get the chance to laugh like a true belly laugh it will bring me so much joy.you dont realize the little things cf steals from you.