It's not about me

At least once a month I meet with a group of moms that all have children with special needs. A few nights ago we met up to have dinner and chat about life. One of the moms referenced a quote from the book, The Purpose Driven Life: "It's not about me." She was putting it into the context of how sometimes she feels guilty for being sad that she has to go through the experience of having a child with a disability. She believes it isn't about her and despite trying not to make it that way, selfishness always finds a way to creep in. We finished the night eating way too much dessert and then I drove home, not really giving a second thought to the idea of it "not being about me".

I believe in an earlier post I admitted to not crying about Cale in a long time. Life had been pretty good and Cale was making progress. My efforts to keep the positive on the forefront of my mind must have been working because I hadn't had a reason to be sad in quite some time. For whatever reason, though, last night I broke down in tears. It honestly surprised me a little and I felt awkward crying in front of Alex. I didn't want him to see me like that, weak and broken. Cale also saw me crying and I can't help but wonder if he knew the reason behind my tears.

I can't really pinpoint a specific event that all of a sudden made me so sad. Yesterday, both Cale's teacher and his speech therapist commented on how hard of a worker he is. They continually praise his determination and patience. Cale has to work for everything, from something as small as stacking one block on another, to maintaining his balance while remembering to move one foot in front of the other, making step after step after step. Things that other kids don't even have to think about Cale has to give all his concentration and attention to. The praises he receives from his teachers make me happy and so proud, but they also put a lump in my throat as I try to not be sad that Cale has to work for everything. Simple play is work and I can't help but be sad that his childhood will never be normal or easy. Some of my tears were for Cale, wondering if he's beginning to understand or question why he's not like the other little kids.

The rest of my tears, though, were feelings of guilt pouring down. It's hard to know if I'm a good mom and if I'm being the best advocate I can be for my son. For instance, I'm used to Cale getting pushed around and having toys grabbed right from his hands. Even normal kids experience that. I'm used to watching Cale chase hard after a group of kids, only to reach them and have the kids turn right back around and run a different direction. Cale never gives up, though - he'll continue to follow them. I'm used to watching Cale look at other kids, knowing that he's wanting to be able to do what they are doing. I even see that as he watches his sister. I'm used to Cale getting frustrated when he realizes he needs help. Last night, though, he was on the floor walking around on his knees. A child in one of those Fisher-Price cars ran right into him. Cale fell face-forward and the child continued to move over him until half his body had disappeared under the car. As I watched and looked for Alex to come swoop him up, Cale awkwardly tried to get up, and once he was free, he didn't even cry. He simply moved out of the way. Unless Cale gets hurt, he doesn't cry when other kids do things to him. He doesn't cry if someone pushes him over or takes a toy away from him. He doesn't cry if kids run away from him and he can't keep up. He doesn't cry when he realizes he can't do something on his own. He doesn't even cry when he gets run over by a toy car.

Is this a sign that Cale simply accepts being who he is? Or is it a sign that I'm not protecting him enough and he's gotten to the point where he thinks he deserves to be treated this way. I don't know where the line is between being an advocate for my son and being an over-protective mother. I want Cale to be tough and learn to stand up for himself, but he's not doing those things for himself and so I can't help but wonder if it's me that needs to stand up for him. Parenting a child with a disability and knowing what's right is so incredibly difficult. But it's not about me and as I think about why I was crying, I'm left wondering what it looks like to have it not be about me. What does that even mean and can it help me try and sort out the right and wrong in raising Cale?