Life can change so fast!
They are very confident young men. As babies, we never dressed them alike; choosing instead to dress them in specific colors so Grandma would never have to ask which baby she was holding. Eric always wore green or purple and Tyler wore red. They chose to continue wearing those colors as they went to elementary school, to help their teachers to see them as individuals and their classmates to know their names. We never had to make the tough decision facing many parents of twins to separate them in classes or keep them together. In our small town, there is only one class per grade level! But the boys thrived near each other, while honing their own personality and abilities.
This has happened very fast. We had no chance to "get ready" for his diagnosis. Looking back, he had symptoms of increasing bilirubin for months. The uncontrollable full-body itching that $100's of creams couldn't touch, the insomnia and the fatigue are all symptoms of a failing liver. But we had no idea. We saw doctors all summer who tested him for every virus and bacteria they could think of. It turns out, even if we had diagnosed it earlier, it wouldn't have changed the course of the disease. It has been working in his body for many, many years. It is probably autoimmune and we hope to learn more about the cause of all this one day. But until we do, all we know is that he has Primary Sclerosing Cholangitis and the only cure is a full liver transplant. When we told him of the diagnosis as he emerged from general anesthetic after an endoscopy called an ERCP, his first question was, "But what about my brother?"
His next question was "Will I be able to donate my organs one day?" Damnit, kid, can't you be at least a little selfish? But I guess that is what living with a twin does for you. Makes you think of other people--especially that other guy that came from the same egg.
My boys will both be fine. Eric will thrive in school this fall, with his cell phone always on, and on the alert for the call that will rush everyone to the hospital for his brother's new liver. Tyler will get over this rough patch and he will heal. We have been told that many of the symptoms will miraculously disappear within hours of the new liver being transplanted. I live for the day that my boy gets relief. He truly understands this gift and he looks forward to honoring his donor by living the best life he can! As an 18 year old boy, he has a bright future ahead and he plans to live it to the fullest! He will live a normal life with few changes and he plans to join his brother at K-State and the Delta Upsilon house in January. Until then, we will focus on his health and spreading the awareness of the need for organ donation.
You know, one of the hardest things is having people ask, "what can I do?" and there is no answer. We need nothing, just your support. So I just tell them to pray--for Tyler, for his family and for the future donor and their family. We will get through this. Bless you, my friends, for your prayers.
If you are interested in learning more about being a donor, don't wait for me to write another blog post! Check out OrganDonor.gov NOW!