Monday, January 06 2014
Hello to all of you Patch Pals fans and followers! My name is Alyssa and I wanted to start out by saying how excited I am to join the Patch Pals team! I am going to use this first post to tell you a little bit about my family and myself. Hopefully it will give you an idea of how and why I learned to think the way that I do.
One of my goals is to inspire others to have a positive attitude toward any obstacle that they may face. Although I am only 24 years old, I have encountered some difficult times in my life. When I say I have encountered difficult times, I don’t mean that I have had a terrible life by any means. In fact, I would say just the opposite; I have had an amazing life so far. For that, I have my parents to thank. They taught me the importance of a positive attitude, which allowed me to use every obstacle I have encountered as an opportunity to learn. It takes practice, but once you’ve learned to see the glass half full, and allow yourself to move forward from devastating events, you will become an all around happier person.
So without further ado, here is my story.
In ’86, my dad was diagnosed with a rare genetic disease called Von Hippel-Lindau (VHL). My parents had just started dating when my dad was first diagnosed. My dad encouraged my mom to leave because he knew what his future battle with this disease might look like, but she stuck by his side anyways. They were married in ‘87 and I was born in ’89.
In short, VHL is an inherited disorder that causes tumors to form in various parts of the body such as the brain, spinal cord, kidneys, and eyes to name a few. These tumors are typically benign, but their location in the body can cause life-threatening complications.
My dad had his first brain surgery in May of 1986, he had his last brain surgery in November of 2011. He had a countless number of surgeries in between. Some of these surgeries are more engrained in my memory than others.
Over the years, my dad’s kidneys were slowly being removed because of tumor growth and renal cell carcinoma (kidney cancer). After losing the last part of his remaining kidney, he was placed on dialysis. This was a terrible time for my dad; he was battling the negative side effects of the dialysis as well as depression. The combination of kidney failure and everything else going on in my dad’s body caused him to get a very rare skin disease. He was one of the very few cases in the US to be diagnosed with this disease. It was slowly hardening his organs from the outside in, starting with his skin. He was in extreme pain all of the time.
In 2002, my mom was able to donate one of her kidneys to my dad. It was a miracle that they were such a perfect match. It was amazing how quickly he began to feel better. This transplant reversed the skin disease and saved my dad’s life. Without it, he would have died a slow, agonizing death. My mom has always shown me how to be a giving person, but this was the biggest example of generosity and love I had ever seen. I am so thankful to her for giving my dad 10 more years of life.
This is just one example of the scary things I had to watch my dad overcome while I was growing up.
I got to spend my 16th birthday in Florida, but as great as that may sound to anyone from the Midwest with a March birthday, it was because of some very scary circumstances. A few days before my birthday, on the morning we were supposed to be heading home from our vacation, my mom woke my friend and I up and I will never forget what she said, “Alyssa, don’t freak out, but I just called an ambulance for your dad.” Minutes later, EMT’s rushed into our hotel room, they placed my dad on a gurney, and within minutes, both of my parents were in the back of an ambulance heading to the hospital. The hotel then called my friend and I a cab and we were on our way too. The cab driver barely spoke English and we had no idea what hospital we were going to. To this day, I’m not really sure how we ended up in the right place.
Upon arriving at the hospital, we were sent to the ER to find my mom. As I was given a chair to sit in outside of my dads “room” with curtains for walls, I overheard the doctor talking to my mom, neither of them knew that I had arrived. What I heard the doctor say was something no one, especially a 16 year old, would ever want to hear about his or her father, “…by then, it may be too late.”
The rest of the details are a bit of a blur, but my dad was rushed into emergency brain surgery. They did a ventriculostomy, which means they drilled a hole into his head to drain the blood that was putting pressure on his brain. My mom later told me that the ER doctor had told her when they arrived at the hospital that my dad would not live through the day. He was on a ventilator and in a medically induced coma for five days. I remember wondering if my dad would ever be the same person that he was before all of this happened.
When he was stable enough, Dad was flown by medical jet into Iowa City. There he began rehabilitation to relearn to walk, talk, eat and everything else it takes to function in day-to-day life. Watching someone you love go through this is not easy, especially when it’s your 40-year-old father. My mom did extremely well at keeping my life as normal as possible while all of this was going on. I am so thankful for that.
On November 28th, 2011, my dad would have his final surgery to remove a brain tumor. The tumor had grown so he started seeing double from the pressure on his brain stem. That morning, I met him at the hospital at 6am. I hung out with him in his pre-op room, as I always did, before the anesthesia team took him back to the OR. While we waited, we joked around and talked like it was just another day. As the years went by and the surgeries added up, I had become desensitized to this process. I just assumed that when my dad came out of surgery, he would head to recovery, and he would be just fine. So when it was time to wheel him back, I kissed him on the forehead, told him I loved him and he replied, “see ya on the other side.”
When dad was finally out of surgery, a nurse came in to tell us that everything had gone well and he was on his way to recovery. I was very relieved to hear this. As we waited for the green light to head back to his room in the surgery ICU to see him, I caught a glimpse of his surgeon walking into the waiting room. My heart sank when I saw him.
He sat down and calmly told us that although they had thought everything had gone well, when they woke my dad up, he was paralyzed on his left side. He had suffered a stroke. I was devastated.
My dad fought so hard to regain his strength. He fought for about 7 months. I watched him try to relearn to walk, talk and eat again, for the second time in my life. Shortly before he died, we were told his brain tumor had grown back and he would have to undergo numerous surgeries that would last three days. He opted not to do this because he knew he would not survive it. He knew it was his time and as he put it, he was ready to go home.
On June 9th, 2012, my 48-year-old father died peacefully at his parents’ house with his entire family by his side. It was so hard, but I wouldn’t have wanted it to happen any other way. His last words to me were, “You are so beautiful, I love you.” As I said my final goodbyes, I held his hand and told him that he was the most amazing father I could have ever asked for. I let him know it was okay for him to let go, I didn’t want to see him suffer anymore.
There isn’t a day that goes by that I don’t think of my dad. I still have some of his texts and voicemails saved on my phone. Some days are harder than others, but I always remember what he taught me throughout the years. He taught me to always have faith. I use my faith to see a brighter future whenever I encounter an obstacle. I know that he is always watching over my little family and I and I know what he would expect from me, even though he’s gone. He taught me to be positive and hopeful and to never give up. He taught me the importance of being strong for my son, as he was for his daughter. Even though I know there were times that he wanted to give up, he always put me first, which motivated him to keep moving forward. He taught me to have compassion for others and to help those in need. By his example, he taught me to be a good person.
My son was born on April 11th, 2013. With the positive attitude I learned from both of my parents as I grew up, I am confident I can teach my son to accept that he may have to face more challenges and adversity than most kids his age. My ultimate goal is to give him the confidence he needs in himself to overcome that adversity and not let anything, especially his “disability,” hold him back. I want him to understand that he is in control of his own future and he has the choice to either, let his eye issues hold him back or push forward and overcome them. My parents taught me that being unhappy is no one’s fault but your own. You have the choice to let hardships defeat you, or you can learn from them and become a better person because of them.