I lived in the hospital pretty much all my childhood years. I was born with a heart disease called Cardiomyopathy, right ventricular dysplasia. I was born with half a heart that failed miserably while my mom was pregnant with me. It was a very scary pregnancy for her, and she had to have an emergency C-Section for me. I was in the NICU for six months.

Overtime, I’ve had a total of twenty six open heart surgeries. I don't really remember all of my surgeries since I was so little. My first surgery was when I was three years old. Before one surgery, I was only seven when the doctor stepped outside to talk to my mom but I heard every word.The doctor said I wasn’t going to survive past eight years old. I understood what he said. I just couldn’t believe what I heard. All I thought to myself was “I’m gonna die.” I was only seven, I was a child, and it wasn’t that far away until I turned eight. I was scared and just felt so many emotions at that moment. I tried to hold myself together when the doctor and my mom came back inside. I was trying so hard to hold back my tears but I was so scared. My tears couldn’t hold for long, and I started crying. I didn’t want to die. My mom came and comforted me in the hospital bed, didn’t even ask me what was wrong, just came to lie with me while I cried in her arms. I don’t think I had to say anything for her to know that I had known. She told me, “Everything’s going to be okay, Princess.” I wanted to believe it, but I couldn’t.

I had a heart monitor from kindergarten to fifth grade, and I constantly had to go to the doctor every two months for checkups. The heart monitor was no fun. My stomach and chest were full of wires connected to a cellphone that I had to carry with me at all times. I would constantly get asked by other students why I had wires all over me and why I had a cellphone when phones were not allowed in school. Because of my condition, there was so much I could not do. I couldn’t do anything that would put stress on my heart or do anything that would accelerate my heart rate. So I wasn’t allowed to run, play sports, or participate in recess. I was just a child, and I wasn’t even allowed to play. It sucked watching everyone else have fun at recess while I had to sit on the bench with my teachers. They tried to make me feel better by talking to me and letting me grade papers but it didn’t help. I wanted to be out there and play with my friends.

I couldn’t even use the stairs or walk far distances. The doctor demanded the school put me in a wheelchair and give me an elevator pass. I begged him not to; I felt I didn’t need it. I already got picked on for having wires all over me, why would I want to add to that by having the privilege of using the elevator when others couldn’t, but I had to use it. My friends always asked to ride in the elevator with me, but I wasn’t allowed to let anybody with me, and when I would say no, they would get upset. 

I hated being different. Everyone was normal and got to do normal kid activities while I lived at the hospital having wires all over me while being forced into a wheelchair. I hated this hospital life. I was in and out of the hospital bed all the time. All I wanted was to be normal, but I knew I never would be. I was always going to be different from everyone else. I was always going to be the girl with the heart disease. The other students neverending questions made me feel so suffocated all the time. “Why do you get to sit out in P.E?”, “Why don’t you have to do this?”, they never went away. It felt like a ringing in my head. All the other students thought it was so amazing that I didn’t have to participate in P.E or take the stairs or even take tests. They wanted what I had. I never understood why; all I wanted to do was to be able to do what they were doing. I wanted to be able to wear clothes without wires sticking out. I wanted to be able to take the stairs with my friend. I wanted to be able to play volleyball in P.E with everybody else. I just wanted to get treated like everybody else. I didn’t want any special treatment. 

Unfortunately, I had to get special treatment, and I hated all the attention. My teachers constantly asked me, “Do you feel okay?” or “Is your heart bothering you?” after everything I did, even when I would go pick up a piece of paper from the front of the classroom. I couldn’t even go to the bathroom by myself. I had to have a buddy just in case I passed out or my heart started hurting. I never had any privacy because everyone was always checking up on me and all in my business. I felt like a fragile object that was about to break. Everyone was being careful and cautious of me, which I genuinely appreciated, but it felt like they were constantly breathing down my neck.

Things changed when I got put on a waitlist for a heart transplant. Little me was so excited to hear that I could possibly have the chance to be normal by getting a new heart. I thought to myself, “I can be normal, I can play sports and have fun with my friends.” Every day since then, I would always ask my mom, “Has the doctor called?”, I was just patiently waiting for that phone call from the doctor saying they found a match for my transplant. As I got older, the phone call never came, so I gave up on thinking it was ever going to happen for me. I was always crying to my mom asking her, “Why won’t they call?’ and “When will I be normal?” It always hurt my mom hearing me say these things, but I was just so confused at the time. I didn’t understand why they couldn’t look harder for a match. The doctors knew how badly I wanted to be normal, and they weren’t doing anything to help me be normal. I was so angry. I just wanted to be able to live my life as a child and I couldn’t.

My mom always tried to make me feel better, she bought me everything I wanted and loved me more than anyone else ever could. But no amount of gifts could make me feel better, I just wanted to be a normal little girl. I know my mom felt hurt that her little princess felt this way and was getting put through this. My mom always kept it together and showed herself to be strong for me. She’s the one who got me through all my surgeries, by my side through it all. I have so much respect for her. I know it’s hard seeing your child go through things so traumatizing and scary, and they didn’t ask for it or deserve it. I didn’t ask to be born with this condition, but unfortunately I was. One thing I would change in my life is to be born without this condition and live the childhood life the way I’ve always wanted. 

As a little girl, I just wanted to be a regular kid with a regular kid's life. That’s all I ever wanted, but as I got older I realized that God made me this way for a reason. He gives the toughest battles to his toughest soldiers. When I was about eight years old, my mom took me to visit the Holy Land Museum. It was the day before my surgery, we went to pray for my surgery to go well and for me to come back better than I was before. My mom had purchased a bottle of holy water and told me to sprinkle some on myself before I go into surgery tomorrow. I was only eight years old, and I had gotten told I wouldn’t live past eight. So I drank the entire bottle. I was only thinking “I need all the prayer and faith I can get, so I’m drinking all of this.” That was the last surgery I ever got. No more hospital visits and no more heart pain. God healed me, he knew how badly I wanted out and he made it happen. He saved me. So I guess you could say, I also wouldn’t change a thing.