03/05/13 Update

Yesterday was a big day for us. Nothing really happened medically, but Mac stayed in school for the whole day! I cannot remember the last time that happened. When he came home he said he had a good day and although he was not happy to have to go back again today he did. I am so glad he is feeling well enough to spend some time with his classmates before being out of school for a bit.

I had a long talk with Liam and when I say talk I really mean I pushed and pushed until he was in tears. I try to let him come to me when he has something he wants to talk about but I knew there was something going on. I have been trying to get him to spend time with some friends outside of school and have offered to invite people over to the house but he always says no. Finally, through tears he told me he didn’t want anyone from school coming to the house because he is embarrassed. He doesn’t want the kids at school to see his house and be around Mac because it is so different than everyone else’s. He is embarrassed when Mac cannot find the right words when he is upset and throws a fit, embarrassed that our house is so full of medical equipment and our routines to help Mac include IV poles for g-tube feeds and embarrassed that when we do go out as a family it usually means leaving early because Mac has had enough and is not feeling well. It was heartbreaking to see him feel so bad about expressing his feelings because he did not want to have them. I explained to him his feeling were never wrong. He has a right to feel whatever he feels. I know that no child in his class would ever say or do anything to make anyone feel bad about our situation, but an almost 10 year old doesn’t see that. He just see’s that our life in no longer “normal”. So this is my new “project”. I am trying to think of ways to help Liam see that although our home is not the same as most it is still a place for him to feel safe to express his feelings and I am hoping if we can do some activities outside of school with a few kids then maybe he will feel comfortable enough to invite them over.

Mac has surgery a week from today at 7:30 am. It should last about 5 hours and his surgeon explained it is not as complex as the previous surgeries but it is still brain surgery. Never in my life did I ever expect to be planning and prepping for brain surgery for my son, let alone a 3^rd one. I am not sure how or why our life has gotten to this point but for now we are managing ok. We have such an amazing support system between our family and friends I cannot even imagine what this would be like without all of you. As I think back to our life pre-diagnosis and I realize we really did have it all. It’s just too bad it takes risking losing it all to make a person realize it. So today I am going to grateful for another day and thankful for the chance to continue making our “new normal” as comfortable as possible.