long days short years: Middle Finger Perthes

There are days that watching my boy in all that he goes through that I feel awed at his strength and his joy. There are also days that I watch my boy struggle and I cry after the kids are asleep. Some days are bright, we know we all have each other and that we will make it through this. Some days are life draining and discouraging. On one such discouraging day, with all the kids in bed, Hubby poured drinks and the two of us toasted an expletive. Because some days only a swear word is strong enough to express how much you hate watching your child suffer. That toast is the back story for this post.

Littlest is very conscious of others. He doesn't want his disease to be a burden for anyone else. He's also a huge people pleaser and a genuine optimist. When you put those things all together you have a recipe for a little boy who says he's good all the time even when he's not. One day the dam finally broke. Tears of frustration ran down his face after we had to call him in because of his leg. While Hubby held him and we exchanged looks of "How do we help him with this?" I thought of the toast and blurted out my suggestion.

"Repeat after me. And if you tell anyone I'M the one who said this, I'll deny it. Okay? Okay. Now say this, 'Middle Finger Perthes'." My boy stared at me and the look on his face said that his mother had finally gone off her rocker. I said it again and asked him to repeat it. Finally he did and ended the night laughing. We told him that it is okay to be frustrated and even angry. And then we told him what we always say when things get hard, acknowledge it and feel it but don't unpack and live there.

Let me clarify, we don't advocate children swearing. He's not allowed to say the actual word. He's not allowed to do the action. But on days when he needs to acknowledge that he's angry with the disease, he is allowed to say (in our home with our family only) "middle finger perthes." Yes, it is unconventional parenting but it works for us. This is how we are acknowledging the anger of a disease that causes a child chronic pain. We just don't unpack and live there. We aren't constantly angry but we do allow ourselves to feel the anger when it comes up.

Somehow the idea came up to have a middle finger perthes party. We decided to have cake. And of course a pinata, because beating a paper mache creature with a bat and then having candy would somehow be therapeutic. We were right, it was. Littlest, his brothers, his parents, and one of his uncles went to the park and had a party last week. Pictures at this point tell the story better than words.

If you are the toasting type and you decide to toast tonight, we'll join you with a middle finger perthes toast. Cheers.