I am in a blue mood day. That frigid color the last blue layer of ocean is before slipping into the the blackness of outer space deep beneath the surface. I have remnants of dreams fluttering in my head like laundry drying in the breeze. Dreams I cannot remember but which make me feel paranoid and nervous.
I was brave yesterday and called a friend to meet me and Erik at McDonald's with her children. I was tired of being in the house watching the weather become more gloomy, and the outing actually sounded like fun. I risked the hangover that usually comes with activities with other children.
I always put on my happy face and pretend like it feels like we belong in a crowd of other families, but it still doesn't quite feel that way. I hate the way people look at me and Erik when I am in a vulnerable state like this. I find myself looking for reassurance, lamely asking my friends if Erik has improved since our last outing or nervously giggling at his antics when he approaches strangers with his seemingly helium-infused hellos when all I want to is snatch him up and and protect him up in my arms. He's getting too big for that now.
I purchased a small packet of french fries, which ended up being a very generous portion, and Erik ate them with gusto, growling wildly for effect and smiling at me as he did so. I hand fed him three-quarters of a hamburger that I tore into small pieces while the other children expertly consumed their lunches with little assistance. My friend and I spent some time standing outside the play structures supervising the children and catching up. Despite an invitation to play hide and seek by his friend, Erik refused to play inside any of the brightly-colored plastic tubes. By now, his friend is accustomed to this and continues playing without him. Erik did venture just inside the entrance of a couple of play tubes and sprawled out on his stomach on the floor, creating a living speed bump for the other children who entered and disappeared above him. At one point, Erik watched his friends playing inside through a window and joyfully rapped his fists against the plastic. I felt like he did, only much less happy about it.
Forever on the outside looking in.
After lunch, my friend treated all three children to towering vanilla ice cream cones. Erik can't hold an ice cream cone and eat it at the same time without dropping it like other children seem to be able to do. I held it while he scooped bites with a spoon and became slightly angry with me and the whole process. It seems he is beginning to compare himself with his friends for the first time. I'm sure this will speed his remaining developmental milestones, but I am watching the seeds of frustration and the falling away of the ignorance regarding his differences being planted. That frightens me.
I don't want him to know he is different. Ever.
I don't want him to feel the things I do when I walk into a room filled with children. There is nothing I can do, though. It's coming whether I want it to or not. If I'm lucky, I will always be there when he turns around for reassurance and strength. I know in my heart this is what I am supposed to do, and if I don't have the strength to do it, I will borrow, beg, and steal it from somewhere. It's my job, and although it is scary as hell, I am incredibly good at pretending I'm a lot stronger than I actually am. I always have been, even before Erik. I should have been an actress. I just know that sometimes when I pretend I'm okay, I actually begin to believe it after a while.
Over the last couple of years, I have watched the parents of other children with disabilities take their kids to parties and parks and schools. Through the sharing of their feelings, I understand that this sense of not belonging will never completely fade. We will always feel a little bit like we are rapping on a window from the outside. I now have evidence that it becomes more tolerable. This is in the phone call I made to my friend to initiate this outing. That's something I would not have easily done, even in the recent past. It's easier because my friends have proven that they will support me, no matter what. I will continue to paste on pink, lipsticky smiles and take away the precious memories I would not have dared to create for me and my son if I had never left the house. No matter how scary it feels. I am incredibly proud of myself for pretending to be that brave. Amazingly, I'm starting to believe it.
But the ache that resides in the deepest part of me will never completely fade.
And that makes me incredibly blue.