I am so tired. Emotionally tired. In a short amount of time, it will be the anniversary of the day that I received the prenatal diagnosis of Down syndrome. If I had known then what I know now, I wouldn't have had that hard of a time with that diagnosis. Here I wasted all those tears on what - something I long for now. Something I just want to have, the Down syndrome experience without any other major issues. I thought it was the end of the world, but it so wasn't. For those of you who have a prenatal or recent diagnosis of Down syndrome, please don't read our story and have fear. Down syndrome didn't do this to us. Down syndrome was the blessing. It opened up our world to a new sensitivity and understanding of others. Sure, it isn't always reciprocal - others don't always have that sensitivity or understanding - but then at least you find out about the character of others. Down syndrome is not what I hate now. Down syndrome is beautiful to me now. And so many people have just the Down syndrome experience. I guess it just wasn't in our cards.
What gets me is epilepsy, of course. Surprised - huh? Not. I don't want to learn about different types of seizures or medication. I don't want to be asked questions over and over again about these topics. It is like being given another final exam after the semester has ended and all you want to do is live it up for the Summer. No, not live it up for the Summer, but at least get some respite, some calm - take a nap at least. And most of all, not have to complete another final exam because you are totally drained. But instead you get another final exam put in front of you on your desk and people just want to know this and that answer. They are screaming at me, "Come on, Karyn, finish up the exam!" Ok they are not literally screaming, but this is my analogy and it sure feels this way. So maybe you comply and although you are tired you get that one additional final exam done. You take a breath and look away for a spilt second only to find that another one has been slapped down on your desk. I get it that people just want to know and be helpful, but these conversations are so draining for me right now. I have decided that for my sanity I have to become a D student and not answer every question. Underachievement is now my friend because I don't have the energy or knowledge right now. This is hard for an A student to admit (I went through my college - undergraduate and graduate with a 4.0). I will do this for me - it doesn't mean that I don't appreciate others' attempts to be helpful. I just need to think about myself right now in some ways. Self-care. So to do this, I might answer questions if I feel like I can or walk away from the desk and take a breather for a while.
19 hours ago