“Mommy, why are people afraid of me?” Braden innocently asks indignantly with his brows pulled together forming a matching crease down the center of his forehead to my own. Squirming a bit at being put on the spot during such a critical moment, I stall to come up with a good answer. “What do you mean?” I ask to make sure I don’t make a mountain out of a mole hill. He shrugged his shoulders and said, “E can go places and I can’t.” It was so black and white in his eyes. The complexities that play out in the hearts and minds of grown ups simply isn’t understood. I took his small hand and hugged him. “I wish I knew Sweetie,” and kissed his head. “Sometimes you have a hard time breathing and that scares some people. We just have to find the cool people that don’t mind being brave when it gets scary. Want some ice cream?” Yeah, I know. Ice cream doesn’t fix anything but it sure did help redirect and keep me from crying. For Braden there is no such thing as a “typical childhood.” Thankfully Braden doesn’t dwell on these things for too long, and we managed to have a nice day together. Well, as nice as it can be considering it mainly consisted of doing laundry and such.
“You know what I want to be when I grow up?” Braden asks from the back seat of our van. I smile even though I know he can’t see me. I have trained myself to do this so that my words won’t come out strangled like the feel on the inside but rather cheery like every mother listening to their child dreaming about their limitless future. “I want to be a pilot!” he declares. “Why’s that?” I query. “Planes are really cool, and I can take us places!” he informs us. I reach my hand over and squeeze my husband’s leg. While the “What do you want to be when you grow up?” conversation is always hard. This declaration really hits my husband hard as he is former Air Force and has a fierce love of planes. He placed his hand on mine giving it a squeeze and we both said, “Very cool!” in unison. Then Braden started chattering on about heading to his Nana and Papa’s house to go swimming. It breaks our hearts knowing that Braden won’t be able to live out his dreams the way a typical child can. However, that doesn’t mean we can’t be creative. He may never be a pilot, but that doesn’t mean he can’t use his mind to do so many other amazing things. Perhaps he will write songs, invent something, or any number of things we have never even considered. We choose to focus on that over the overwhelming hurt of option B.
We can tell that neurologically Braden’s condition is deteriorating. He knows. He knows. His condition doesn’t affect his intelligence, and he knows that at six he should be able to know when he needs to use the restroom. While he has always been urinary incontinent, his episodes of fecal incontinence are increasing. The shadows behind his eyes tell me a story of a child that is confused. His body language screams that this isn’t fair, and I tend to agree. I brought him into the bathroom and shut the door for some privacy for him. He had tried to clean up the mess that hands plagued by tremors created while disrobing. I sat on the side of the tub, not really caring about the smell or mess. I looked my little boy in his big eyes and said, “It’s ok. It’s just poop, and it isn’t your fault.” “But I can’t feel it when it needs to come out!” he protested. “Yes, that’s why it isn’t your fault. We all know you didn’t do this on purpose,” I remind him. *sigh* The next thirty minutes were spent steam cleaning, disinfecting, and cleaning up the aftermath, and Braden painfully apologizing.
I sit here and hope that I can just not bungle this up. I want so desperately to make sure that Braden never falls into a victim mentality, that his self esteem remains high, that he never loses that twinkle in his eye. While he is afraid that people are afraid of him, I am afraid of me. I am afraid of not having the right words when I need them most. I am afraid that my strength will falter. I am afraid he will see through my façade and see the scared mother I am on the inside.