October 24, 2012

I know I have talked about my days being constant ups and downs and today was no different. Mac is feeling good and at home so that should be good enough, except it isn’t. We have settled into routines that consist of Mac missing school at least once a week or being dismissed for not feeling well. I can never tell if he just needs a break or is really not feeling well, and to be honest it doesn’t really matter. If he is tired and needs a break he is not going to learn anything at school anyway. So today started out as usual with me dropping off the boys at school then running to the store to get Mac the Ironman Arc Reactor (the glowing thing on his chest) that lights up. The phone rings at 9:30 and it is time to pick him up because he got sick and his stomach hurts. This usually would not change my mood that has been up and down so many times already from the many Facebook friends I have met whose children are also battling this horrific disease or have earned their angel wings far too soon, so I pick him up and bring him home. I pick Liam up at 11:30 because it is early dismissal and explain Mac is not feeling well so we will not be able to go out for lunch and to the movies as previously planned. He is so disappointed, but Liam being Liam while holding back tears says “its ok mom, I understand”. When we get home I go to sign his homework planned only to find he had written in “see movie with Mom and Mac” in today’s to do list. My heart physically hurts. I am so mad that he has learned to accept disappointment so easily. I have learned to make plans but always be flexible knowing things can change at any minute. I am so angry today that my boys have to live this way. I don’t know why any child would have to live battling this disease or any child would have to watch their family torn apart as a sibling physically rages war on their own body. I have accepted this as our life, knowing we will have highs and lows but our lives will never be what they were or even ok again, but how do you explain this to children. How do you explain how great it is that Mac is feeling well and looking awesome, but it’s not good enough? We have learned to be thankful for our time together and live every moment as if it was our last, but wow is that exhausting.

So hug your kids extra tight tonight and remember the laundry and work will always wait for you….your kids cannot.