i know. im lame.
and today, for some reason (couldn't possibly be related to my period being a week late) im really sad. its duchenne awareness month and that is awesome. but because the whole dmd family is doing such a great job at posting little blurbs and facts and reminders and super emotional thoughts about dmd, i feel like its been totally in my face lately. and its not that i try to ignore it, and im definitely not in denial, i just have to operate in a way to keep my feelings in check. and its been kinda hard to do that these past couple weeks.
finnys falling a ton and i know ive shared my skepticism in knowing whether hes falling because its normal for a two year old to fall a lot, or if its something more and his decline is already on us... i can just tell that he doesn't act like a normal toddler. i didn't really notice it too often before, but we were at the playground the other day and finny willingly took quite a few breaks from playing. what toddler stops playing, hangs out with mommy for awhile just watching the other kids play? none that i know of. i always had to drag ashey away from playtime, and heres his little brother giving himself time outs. then we were at the store and he insisted on walking himself but he could only take about two steps before he fell, hed get back up and take a couple more and fall again. i felt like crying right there in the store, but instead i picked him up and told him we were gonna go get the car while daddy and ashey paid for the groceries. its awful to see your child struggle doing something as normal as walking. the hubs tries to make me feel better and suggests that maybe his shoes were tripping him up, but just being with him 24/7, i see all the little things that make him just a little different than the other toddlers his age. and it makes me really sad.
and you want to yell and scream about how unfair it is, but what good would that do? id just be a crazy woman yelling about something that very few people can understand. because as awesome and understanding as friends and family are, they have no idea what it feels like to know your child is going to die. and i know, of course everyone dies, but my kid is gonna die way too young, and hes gonna have a tough time even getting to that point.
and i knew that this diagnosis was going to change us, i mean, how could it not, but i find myself thinking really jerky thoughts sometimes. at least i can recognize what im thinking is jerky and crappy so i guess that's good, but i don't like that i have to think twice about something before speaking. i used to not really question myself too much because ive always been a pretty positive, happy person, but lately i really have to make sure im not about to say something mean. like when people complain about something super trivial like its the end of the world... i kinda wanna punch them in their face. or when people post these inspirational sayings about giving up your cares and worries and they'll be taken care of, sometimes i wanna respond with something like 'obviously your child does not have a rare fatal disease that has no cure' see what i mean? i have total bitch thoughts going on through my head sometimes. and its not all the time, its just been a rough day so blogtown gets to be the receiver of my ranty-ness.
i hope that eventually ill come to better terms with everything and i wont have these little angry flare ups in my head, but i don't think thatll happen too soon. i mean, weve only known for four months... four tiny little months that feel like a lifetime. its just so... consuming... you can turn it off and ignore it for a few hours here and there with the help of distractions, but something always comes up that reminds you that its still there, lingering in the back of your mind, just waiting to step out of the shadows right before you fall asleep...
f.u.dmd.
