My people

 

I need to brag. 

I’m proud of who we are when we are together. The kids we started out as and the adults we have became. The challenges that faced us all and how we all stood there together conquering everything that came at us. 

  

Have you ever heard of the song my Rodney Atkins “these are my people

Their is a part in the song where it says 

“And these are my people, this is where I come from

We're givin' this life everything we got and then some

It ain't always pretty, but it's real

It's the way we were made, wouldn't have it any other way

These are my people

We fall down, and we get up

We walk proud, and we talk tough

We got heart, and we got nerve

Even if we are a bit disturbed”

These are my fuckin people. 

These people here bring me out of the darkness. 

The darkness that consumes me and makes me think this life isnt worth me living in it.

These fuckin people grab me by my arms and pull me up and out of that mindset by just loving me when I feel like I don’t deserve that love.

It’s not the words that prove to me that I’m worthy it’s the actions. It’s the thoughtfulness actions that tell me everything they never need to say. 

I’m sure they think it might go unnoticed but it never does. I see it all. I feel it all. 

That’s my problem right now, everything I feel I feel it 10x the amount it should. Good emotions and bad. 

But it’s the constant actions of my people that reminds me time after time that even when I can’t pick myself up. They have me. They will carry me to where I need to go and they hold no judgment. That always feels so heavy on my heart because they have carried me more then I have ever carried them. It feels one sided and that causes so much hate for myself. I ask myself why? why do they show up time over time when I have nothing to give them? Why? i don’t understand. But I know just because I don’t understand why it doesn’t matter to them, it doesn’t mean it matters to them. They love me. They want me with them and they make changes to make sure that I’m taken care of. Not many people understand how it takes a village with someone like me and my needs. Because I’m the great pretender, I can pretend all is well and smile and laugh like I have no cares in the world but inside I’m feeling the impending doom and it becomes louder and louder but the love they give me and show me in the big gestures and small ones are louder then the conversation in my head. 

So yes, this is us. My group of heathens who would fight the devil from dragging me down. 

Stuck in the middle

💜 I’m stuck in the middle of being disabled but still appearing as an able bodied individual.

💜I’m stuck in the middle of living a great life & why is my life so difficult.

💜 I’m stuck in the middle of trying to be productive in my day & too much will have an impact on tomorrow.

💜I’m stuck in the middle of depressed but still so full of joy. 

💜I’m stuck in the middle of planning for my future and still living like tomorrow isn’t promised. 

💜I’m stuck in the middle of complicated disease but great patient. 

💜I’m stuck in the middle of knowledgeable about CF/ transplant and not having a clue of why I feel the way I do, and goi ‘n what the heck?!

💜I’m stuck in the middle of being in pain and being in pain and not showing it so people don’t judge me. 

💜I’m stuck in the middle of being Jessica and Jessica with CF and a double lung transplant.

It’s been a month since…

My dearest Uncle Larry

It’s been one month since you have left earth and your earthly body. I’m not going to lie to you and tell you it’s been easy. It’s been hard on all of us. To sit in your house and you not be there is difficult. Much more difficult than I think we expected. It’s your home but know it’s starting to feel like a strangers house. 

We miss you and your sense of humor, the way you constantly showed up with something to give, and us teasing you about it. We would say “Mom’s going to be mad at you” and you would casually say oh well. Cleaning out your house has been therapeutic and also emotionally draining. The things you loved and what was important to you was so obvious. Your love for QVC really was obvious you loved your temptations and lock and lock. We cleaned things out together, usually laughing as we are trying not to cry seeing some of the things you had..usually you had multiple things. Why did you need 4 waffle makers? and about a dozen fans? But we enjoyed being at your home and I’m sorry we never got to have dinner like I told you we would but we ate at your table and I think that would make you happy. 

I know you are with Kenneth and it probably feels really good to be together after 24 years of being apart. I hope you tell him all about us and let him know everything that has been going on since he left. I hope you found Grandma and told her about us all down here and how her memory is still alive and strong. 

It’s hard to look back and think of how important you were/are to me and Aaron. How in so many ways you were our “Grandpa.” You were always so loving and kind and generous. You were mischievous and funny. Did I say generous? Well you were so generous I have to let everyone know 2x. 

I find a lot of comfort being at your house and it breaks my heart to know it won’t be available for me to go sit and reconnect with you whenever my heart and body need to be close to you. Instead I’ll have to find another way. 

When you were in the hospital I always told you how proud I was of you for fighting so hard. Cause you held on for a long time. I told you everyday how much we loved you and wanted to take you home. I let you know Aaron and I always loved you and never for a minute did we ever doubt your love for us. 

It brings me comfort to know when I get to heaven you will be pushing everyone out of the way to get to me first. I picture that first embrace and it eases the fear of going before everyone knowing you will be there waiting to introduce me to everyone who has been watching me. 

I know you’re with me still, I feel it in my heart and in my bones. The little reminders are perfect and always make me smile. I told you we would take care of Mom and we will always keep our word. She is the most important lady to us all. 

No matter where we go and what we do it will always feel like a piece of our hearts and our family isn’t with us. The impact you made in our life is so huge no one or nothing can patch that hole in our hearts. Thank you for loving us unconditionally and accepting all our chaos and craziness. We miss you, we will never stop missing you, and we will keep you in our hearts. 

 

Aloha  Bird Legs aka Jessica 

Late night hospital thoughts

Even in the hardest moments, I’m overwhelmed with gratitude. I’m so thankful for the love and support. The prayers that lift me up and keep me steady when I feel myself getting weak. I’ve been impatient for approximately 24 hours and have had five pokes for iv. At the moment, I have a successful IV and one that could go any minute. And if you know some of my struggles with my health and through the years,you know how difficult these IV pokes can be for me, especially emotionally.

I get concerned by the fact that it’s so easy to be this other Jessica. To be the one who’s constantly taking notes, watching what comes in, and who comes in. Are they dressed in the proper protocols? Why are they here? What team are they from? What are their concerns that they’re looking at that I might not be looking in the same direction? It’s also moments of being that Jessica that my Nurses on 2 West remember, who is observant, polite, and constantly trying to make the best out of this situation, knowing we don’t know truly what the outcome could be. What I mean by this is more of a sense like are we finding the answers to questions we have been asking for so long about the shortness of breath and the pain.

Even though this is not exactly the place, I would like to be. I’m so grateful to be here at my home away from home, 2 West at UCSD. I walk in and I’m welcomed with open arms, with love and compassion, and even some laughter when we get a moment. They have kept me busy with catching up with each other, showing photos, and just giving life updates. Anyone who has been in a situation somewhat similar to this. They will tell you that this form of medicine ,the love,

 the laughter. The compassion in many ways works wonders on your mental health, which can correlate to your physical health. 

I’ve watched my body do amazing things to keep me alive, and sometimes it’s just mind-blowing how much it can handle. Even through the moments of frustration, anger, and even fear, I have this mindset that everything I have been through, every poke, surgery, even celebrations,this is exactly who I’m supposed to be. I have to believe that at the moment.

Thank you to every single person who reached out and said they are praying for me and a Wii k recovery and the ones who simply asked what can I do to help you. It is a beautiful thing to be surrounded by love. 

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