Lincoln is having a hard time right now. Its getting close to the end of his first year in treatment and he is headed toward long term maintenance without any signs of relapse. The hard part is that he is a three year old that has missed a lot of a normal life, including being disciplined.
When you have a child that you know has a long life ahead of them, you train them to be good kids by withholding things that you know could be harmful to them early in life, but when you don't know if you have a month or a year or even a few years, you find yourself giving into their every desire. Now that Lincoln has a 90% chance at life, he is going to learn how to live it, even if he doesn't like it. It not easy for any parent, but when you are trying to raise a child that is going through chemotherapy you have more of a fight on your hands with the extreme emotional state. Not only that, but you don't know how their little bodies really feel and you have to be careful that they don't actually hurt themselves when they throw themselves on the ground and start banging their head on the floor. Sometimes you just have to break the rules of being a parent and try to start over, keep it calm and fight on to keep them healthy. During this phase of treatment we have more medicines to take everyday and night and sometimes it takes 30 minutes to get a 5 second dose down. We still have prizes that we will have to give him to help him get through the hardest things like shots but hopefully we can use less of this comfort/bribery to save some money for the next 3 years of L.T.M. I'm not sure if he is ever going to sleep in his own bed again, but I am hoping that we can do another camp out in the back yard soon to break him our of my bed. Lincoln and his sister have a normal relationship playing and fighting but most of the time he wins because its a special time in his life. We try to treat Emma just as special at times, but they both need to a chance to hear and accept "no" or "not yet"
July 1st with be diagnosis day, which is one day after our wedding anniversary. Today was also a hard day for my family two years after my nephews flew away on angels wings free from the suffering of cystic fibrosis. The next year will be new and will challenge us in ways most families will never know, but as long as help keeps coming our way, we want to pay it forward wherever possible.