What makes it hard...

As I type this, Jimmy is on the phone with the specialty pharmacy that will send us the eye drops that Landon will begin taking. My guess is that we will start putting the eye drops in his eyes within the next week. It's real now. It's going to happen. It's not a thing of the future. Landon's nephrologist said that we can try and if it's a disaster then we let it go for a while and try again. I feel like this is just another thing that he has to do. It's just not an option. I am anxious about giving him the drops, but have been assured by many parents in the Cystinosis community that this is the least of the worries. I have to remind myself that I underestimate Landon, I always do. I am realizing that as he gets older, in many ways this all gets easier but in some ways much harder. Taking his medicine is just part of his routine. Once in a while he tells me "No" when I tell him that it's time for meds but its usually because I am interrupting his fun. He has been complaining that his belly is sore (the site where the G tube is placed). I have had several doctors look at it and they all say that it looks good. But sometimes it gets pulled or I think he sleeps on it and wakes up with it being sore from the way he was positioned. He has been complaining more lately so I changed it tonight (I will get back to this)... Anyway, he told me yesterday that "it hurted" and asked me to take it out. I told him that when he is bigger and can take put his medicine in his mouth, that we can take it out. It made me really sad though... So, as I said, tonight I decided to change his Mic Key button. He knows what to expect now and my sweet boy tries really hard to be brave. He told me that he wants to do it. He laid on the ground with a syringe in hand and put it exactly where he needed to. I let him help me use the syringe to pull the water out that fills up the balloon inside his belly (to hold it in place). He was okay with that. Then I pulled the Mic Key button out of his belly. He let out a cry. I tried to quickly place the new one in but that's easier said than done. I made a funny face and told him to hold his breath and puff out his cheeks. He laughed but that quickly turned to a panic and crying. We hugged and he cried for another minute and told me that it hurts, then he wiped the tears away and started watching television. He understands more and wants to participate in his care. This is a good thing.. He is more verbal now so can communicate what he is feeling.. also good.. He is learning coping skills. What makes it hard is hearing him say that he wants something to go away when I can't take it away.