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.