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