I took the kids to the park this afternoon since they took early naps today. There were a lot of people there and I immediately noticed a strange feeling in my heart. I quickly diagnosed it as a fear of man, fear that people would notice that my son was different from the other 17 month-olds. Would they notice that Marcus couldn’t stand, walk, or play with the sand like the other kids? I didn’t want to be noticed, just kind of wanted to blend in with the crowd unassumingly. I guess that’s what happens when I fear what others think of me…I just want to be like everyone else and not cause others to think that I’m any different than them.
But then I put Marcus in the swing and he lit up. With every push, he squealed and giggled. Apart from Audrey, who was as happy as ever to be outside and alive, Marcus had the brightest, most joyous look on his face. Then I realized that I actually wanted people to look at him, to realize how specially different he was from the rest of the kids out there. I’m not sure if I was applying this right, but if the opposite of fear is love, then I wanted all of the others to know how much I loved my son.
Rather than hiding in a corner, I almost wanted to announce to the other moms that my son had Joubert Syndrome. I wanted them to know that just a few months ago, Marcus was a little rag doll hanging over the side of the swing, but now he was sitting upright and loving the sensation of going up and down, up and down. I wanted others to know that the fact that Marcus sat with me on the sand without being scared of the feeling of sand on his feet, was a huge step in his sensory integration. I wanted them to see how strong he sat up at the top of the slide, and to see his huge smile the whole time I held him the way down. Knowing that he was different all of a sudden gave me a sense of pride. The other moms wouldn’t know what a tremendous privilege it was to care for Marcus and to receive so many blessings through his life.
I wonder how it will be as he gets older. I’m sure the fear of man will creep up again when he starts crawling. He’ll be crawling on the ground while the other kids are playing tag. Or he may even be in a walker while the others are climbing and jumping off the rocks. I’m sure I’ll be facing my fears again. But I also think that I’ll be watching him with so much pride and so much thanksgiving, even if it’s with tears in my eyes. I’m so proud of him, our little fighter.