Something that's been on my mind.
Something struck me the other day. We were having a really rough day, Oliver and I were both sick and it was taking all of my strength just to keep him occupied enough that he wasn’t screaming. I reached for my phone, typed out a status about the struggle, and paused.
Should I really post this? How can I complain about the bad day we are having when I am fighting so hard to get people to see that Down syndrome is a blessing? What if people think I’m a hypocrite? So I deleted the post and continued on our miserable day, but the instant feeling of “don’t post that” still lingered. Why do I feel this way? Why am I so afraid that if I show all sides of Down syndrome that people will choose to not accept my son as a person? Part of me is so afraid that the people that have described him as having no greater quality of life than that of a dog will win. They will see my rough day post and share it for the world to see, getting everyone to chant along with them that my son is not worthy of living. But will I ever really change those people’s minds anyway? Should the rest of the world who is open minded and willing to learn about my son be denied authenticity because I am afraid to let people know it’s not always sunshine and roses?
Those of you reading this, willing to learn about Oliver, willing to get a better understanding of Down syndrome, and aren’t afraid to ask questions deserve to see every angle of the life we live. The good days and the bad, the tantrums along with the sweet moments. Some days are rough, some days are really rough. The majority of bad days are created by nothing more than a toddler being a toddler. But the really bad days stem from something bigger. Sometimes it’s as simple as a commercial where parents watch their children grow up, go off to college, get married, have kids, and the realization that those things are not likely to happen for your child. Sometimes it’s the days where he is screaming at me because I didn’t turn on the right show but he can’t speak yet to tell me which one he wants and the fact that he is delayed pulverizes me. But those days never last long, and the pity party is celebrated in secret, because honestly, we are so lucky, and things could be so much harder.
I don’t want to fear authenticity anymore. I am not a perfect mom. My kid has a diet of mainly EGGO products, and I let him watch as much TV as he wants. I laugh when he trips, and most days I tell him he is being a jerk at least once. Some days he makes me want to pull my hair out, and sometimes he does it for me. We do not have a regular bath schedule, and sometimes I get lazy with our therapy homework. I am nowhere near the raw milk, make your own baby food, feed your toddler kale kind of mom, and I’m ok with that. Today our Internet and TV went out and it sent me into a full-blown panic because we don’t know how to survive without watching Sing at least once a day. Don’t you worry, I had recently backed it up on the tablet and the day was saved.
I guess what I’m saying is, I want what I write to mean something. I want to make people think, change their minds, reassure them of their choices, and I can’t do that without being completely genuine with all of you, and from now on that’s what I am going to be. Prepare yourselves, because things are about to get pretty ugly, probably a little gross, and most definitely a lot more real.