To Live is the Rarest Thing in the World

Not all of my adventures happen on a bicycle or in a kayak. My middle son turned 25 this year and while it may not seem like a big deal to most people, it’s kind of a big deal to me. When he was a baby, he was sick a lot. At one point they thought he had leukemia and we had him in the hospital for a bone marrow biopsy the next day. My youngest son almost went to transplant. We’ve also had scares with overwhelming, life-threatening infections and a myriad of unsettling health issues and complications. We didn’t know if they would live into adulthood, so it really is a very big deal to me. Today, I leave with my middle son for Cincinnati so he can go to the Adult Cancer and Blood Diseases Institute at Cincy Children’s Hospital. This impending trip made me think back over the years, as these sort of trips do.

This part of my journey has made me realize, in a big way, that I need to be thankful for every moment in life. It also made me rely on God completely, and choose faith over fear. For 25 years the boys and I have lived knowing that any virus could hospitalize or kill them. Bacteria cold kill them. They don’t make enough white blood cells to fight infections and the ones their bone marrow does produce don’t work properly. We had to choose early on to LIVE despite their immune deficiencies.

Once, when my youngest son fell off his bike and scraped his knee, he landed in the hospital less than 24 hours later with an infection. It was so bad that they felt he had a joint effusion. A few days of IV antibiotics and home on oral, we made a planned trip to the beach. I had planned this trip with the boys and a close friend of mine and we made it! A few weeks later, he was out riding his bike again. I had a friend ask me how I could allow him to ride his bike after the recent hospitalization. I explained then that we weren’t going to live in fear, that I wanted my boys to LIVE, not to merely exist. He was also hospitalized with the life-threatening infection after neurosurgery at Duke, and we continued to live without fear. None of us is guaranteed tomorrow.

One of my favorite quotes is a quote from Oscar Wilde, “To live is the rarest thing in the world. Most people exist, that is all.” I find this to be absolutely true. Most people exist from day to day and don’t really LIVE life. As my boys were growing up, they did spend an inordinate amount of time in the hospital. I tried to make sure that the hospital and their illnesses didn’t define their lives. Yes, they have Shwachman-Diamond Syndrome and Mitochondrial Disease, the middle also has Eosinophilic Esophagitis, but these diseases do NOT define who they are!

What do I mean by “LIVE life”? I mean, enjoying life, taking in all of the beauty, experiencing new and exciting things, living without fear, being the person God created you to be and living the life God gave you to the fullest. Your illnesses and/or disabilities do not define who you are — you are created in the image and likeness of God! You can choose what kind of life you LIVE. Sure, my boys dealt with surgeries and illnesses, but together, we made adaptations to ensure that they could live a full life. Some of the normal childhood things they did were more difficult for them than their peers, but we didn’t allow their diseases to stop them from doing things. I made them into germaphobes I taught them that they had to be more careful, that they had to wash their hands regularly and avoid being around people with contagious viruses for extended periods. We went to church every week, we grocery shopped, we went to the YMCA and they played sports. They participated in theater groups, art classes and other community activities. We continued to LIVE instead of hiding in fear of what may or may not happen.

There were many bumps along the way, but I believe that my boys have had good lives full of adventure and fun. My middle son will need another surgery sometime this summer, which requires a special protocol due to his underlying illnesses. It’s going to be okay. He’s been under anesthesia somewhere near 60 times, but despite it all, he lives a full, happy life. We make adjustments here and there, but we are never afraid to LIVE! God has given each of us one life to LIVE and it is up to us to LIVE that life to the fullest. If I should die tomorrow, I know that I can say I’ve had an amazing life! I have enjoyed His creation and challenged myself to look for something to be thankful each and every day. Live and love each and every day as if it may be your last, for you never know when you will be called home.