It's an interesting question and one I asked myself when I was pregnant with Johnny. I never knew if there would be a day, or even a moment, that I didn't think about DOWN SYNDROME. That's how I thought of it, as big capital letters flashin over our families all the time. It was so hard to wrap my head around that I found that it's all I could think about sometimes. The words would just roll around and rattle in my head constantly. Down syndrome. Down syndrome. Down syndrome. Over and over again, every other thought was Down syndrome. People would ask me a question, "What would you like for dinner?" And my mental reply would be, "Down syndrome. Wait? What?!? No. Pasta. Say pasta. You always want pasta. Yes, but what about the DOWN SYNDROME?!?" I don't think I ever blurted out Down syndrome in place of a food order. But it didn't stop. My own inner monologue was layered with thoughts about Down syndrome. I would think to myself, "I need to take the kids to the store. Down syndrome. We can go to hobby lobby first. Down syndrome. Oooo I have extra money in my budget for yarn. VSDs and ASDs mean potential surgery. That's common for Down syndrome. After we can go to target, I shouldn't forget soap and toilet paper. And don't forget about the Down syndrome." Seriously. It was a lot of thinking about Down syndrome. Thankfully, it wasn't a lot of meaningful thoughts on Down syndrome, it was just always there, in my head, never ceasing or going away. It was almost as if there was a flashing sign following me around (or maybe leading me) so I would never forget that my child possessed and extra chromosome. Sometimes I wondered if other people could see the imaginary sign too. As if they could tell from my swollen belly and thoughts that I was carrying a child with Down syndrome. It was a silly thought of course, but that is how suffocating it was at times.
Now, it's better. And I don't know that I think about it less, as much as it has become more natural and second nature to have it on my mind all the time. To think about Down syndrome and all that Johnny needs is like breathing. In breathing, I don't have to think about it in order to do it, and for the most part, I don't have to think about his needs, I just take care of them. Picking Johnny up to work on standing and building his quads or stacking items or labeling everything is just what we do, just like inhaling and exhaling. Scheduling all the doctor and therapy appointments and making sure everyone has the best information available to treat him fully is just habit, the same as trading carbon dioxide for oxygen. Being aware of his glasses, orthotics, low muscle tone, and any other actual special need he may need addressed, is easier than even a yawn or a sigh. You just do it. And I am thankful for it. Just as any parent becomes great at taking care of their kid because it is second nature, so too has taking care of the Down syndrome side of having Johnny.
That being said, just like breathing, there are times you need to focus on it a little bit more. There are times you need to be more deliberate about addressing certain needs, appointments, or milestones. Just as you may breathe a little deeper for exercise, under certain atmospheric situations, or in fight or flight, you may think a little bit more about Down syndrome and how you can specifically address and meet those needs your kid has. On the flip side, sometimes you think about breathing too much and it becomes difficult, almost debilitating to your body. The same goes with letting Down syndrome consume me and my thoughts. If I think about it too much or think about all the bad things, how hurtful people can be or the sadder correlations within the Ds population, the panic quickly sets in. In fact, the labored breathing, quickened heart rate, sweaty palms, and faint nausea that come with focusing too much on breathing is similar to the anxiety from devoting too much of my energy to Down syndrome only. You have to balance your breathing and take in only as much as you need at a time.
My every other thought is not about Down syndrome anymore. I do think about it a lot, but in it's proper place, tucked away in the rapid stream of mommy consciousness that flows through my brain. It's there, it influences a lot of our life, but it doesn't scream at me any more. At least it doesn't scream all of the time. Sometimes it's a scream, sometimes a whisper, usually it's just a dull roar. Which, when set along side the dull roar made by grocery lists, schedules, plans for school and gymnastics for the girls, budgeting for dates and a new house with Matt, and dreams for a bubble bath and a glass of wine, a dull roar is just fine with me.